Patient Testimonials

I am post-op 4 years, and this is my 3rd testimonial on here, because recovery is an ongoing process, and I would like to share my experience with you in hopes of easing your path. For context, I was completely bedridden prior to surgery, and it took me 2 years to fully recover post-op. But I did fully recover, and life was a dream. It was such a dream that I forgot all about the many hard-earned lessons that I had learned, and I let the mundane stressors of life pile back up on me. I got seriously, life is falling apart, kind of stressed and my first warning sign of an impending flare up was I developed TMJ. Not putting the pieces together that I was overly stressing my nervous system, I continued to stay in a toxic state. Then I decided to do some yoga to try and relax. NOTE: I do not recommend doing yoga. The flare up in my sacrum came on over 2 days and before I knew what was happening, I was back to being bedridden! I couldn’t even sit up. After a full year of being recovered I thought that I was fully recovered, as in never have to worry about it again. Turns out I was wrong and totally devastated. Dr. Feigenbaum’s nurse informed me that flare ups have been reported 5-7 years post-op. The flare up was very scary, came at the worse time ever in my life, and lasted for 8 months! But it did go away! Here’s what I did: Anti-Inflammatory Diet Steroid Pack/Shot THC Tincture & Gummies CryoTherapy Large Ice Mats Every 2 Hours Effexor for stress. I remain on Effexor to help with my anxiety and stress levels, and I take THC tincture and gummies every day to eradicate pain, restless legs, and calm down my nervous system. The combo, plus a lifestyle overhaul, has been working miracles for me and I am so very grateful to have recovered once more. I believe it is very important that we stay on top of our stress levels, especially since our injury is directly associated with our fight or flight system. I wish you all speedy recovery and hope this prevents you from having a long setback like I just experienced. All My Love to You & Yours, Sheryl PS Dr. Feigenbaum Rules Forever & EVER!

Surgery date: June 2020 Location of cysts: S1-S4 I will forever be grateful to Dr. Frank Feigenbaum and his team. This surgery truly saved my life and I’m so proud to be a Tarlov Cyst Disease survivor. I hope my story can inspire those of you that are suffering, to not give up and know that you are not alone. Backstory: I first developed sharp shooting pain in my tailbone in June of 2016. I spent the next four long years, trapped inside my deteriorating body, fighting for answers and the courage to carry on. I was a healthy female, in my early twenties and the medical community (with the exception of a few) had failed me and this is my story. One year later, in June of 2017, I was absolutely miserable and had tried everything under the sun to release my body of this pain. I finally couldn’t take it anymore and left work in the middle of the day and went straight to the ER. I couldn’t sit, had numbness down my right leg, neuropathy in my feet, severe lower back pain and the feeling like I was being stabbed in my tailbone. I was offered an x-ray, shot to help with the pain and sent home with a prescription for pain pills and a referral to a spine specialist. One week later, I met with the spine specialist and he had diagnosed me with Coccydynia and referred me to physical therapy. My physical therapist, Stacy Koenigs, went above and beyond to help alleviate my pain and provided me with the knowledge and tools to give relief at home. However, approximately 1.5 years into PT – I started really questioning my diagnosis. Things didn’t seem to be adding up. I was doing ALL of the things but was rapidly declining. I would go to work, come home and crawl into bed for the night. I felt so lonely, depressed and hopeless. I had been told over and over again by the spine specialist that the tailbone takes a long time to heal. However, I knew in my gut, that something was seriously wrong with me. Unfortunately, much like my other Cyster & Myster’s have experienced, I was not met with compassion, empathy or a care in the world from most of the medical community. In fact, I was laughed at, mocked and ridiculed for suggesting Tarlov Cyst’s could be the cause of my pain. Not by one doctor but nearly two dozen spine specialists, NP’s, MD’s, DO’s, neurosurgeons, pain management physicians, interventional radiologists, ER doctors and nurses. Not to mention, most were very quick to push prescription medications and/or injections and completely dismissed my questions and concerns after I declined their offer. I didn’t want to mask the pain! I wanted real answers and a proper diagnosis! One spine specialist, in particular, advised me to seek professional counseling because this was the “best you’re ever going to be, kiddo”. I tearfully exited that room and spent the next several weeks reading medical journals, articles and anything that could further educate me on Tarlov Cyst’s. I was very thankful to have found The Tarlov Cyst Foundation page and resources readily available. October 2019, I mailed my paperwork and medical records to Dr. Feigenbaum’s office. January of 2020, my husband and I flew out to Dallas for a consult with Dr. Feigenbaum. I was properly diagnosed with Tarlov Cyst Disease and was informed that I was a candidate for surgery. I was completely overwhelmed but felt validated for the very first time. (Surgery was scheduled for April 2020, however; due to COVID-19, I didn’t have surgery until June 2020.) The first year of recovery is an uphill battle. The healing and recovery process is as much mental, as it is physical. You really need a strong support system because every day of your recovery is different. My biggest piece of advice is to slow down, you can’t rush the recovery process, so take the medications if you need them, lean on others for support, rest when your body tells you to, walk daily. You will have good days and bad days but please know that your bad days will not last forever. I’m so thankful for this second chance at a new normal. I no longer grieve the life that I once had because I have finally found the light at the end of the tunnel. I can feel the sunshine on my skin. I can hear laughter in the distance. I can smell freshly cut grass. I dream about my future. I found joy. I found happiness. I found a life worth living again. To those of you still struggling with this terrible disease, please know that you’re not alone. I, too, was in your shoes merely one year ago. I would encourage you all to send in your paperwork (if you haven’t) and lean on your support system. Do not let this disease win. Last but not least, I couldn’t have done this without the support of my husband, family and friends and the medical professionals that rallied behind me. Stacy Koenigs – physical therapist, Dr. William Brandon Goble, Dr. Michael Nicholson, and Chandra Brown -ARNP.

I put off writing this for many, many months. I put off sending in my surgery surveys and taking my follow-up MRI’s. I didn’t think I would react this way to the whole process, but I did. I did it because I was full of anger and doubt. I was mad at everyone and everything around me. In truth, I was angry that this whole thing had happened to me at all and so I resisted every part of it. Over time though, something magical began to happen. Slowly my anger lifted and clarity came forth. I finally surrendered to the process of recovery and therefore it began to transform me. My anger became immense joy and gratitude. My doubt became strength and confidence. My hate became love. Dr. Feigenbaum cannot tell us how, when or if we will recover, nobody can. Dr. Feigenbaum can only put himself out there as a physician and follow his heart in a direction of medicine that is mostly ignored and yet transforms the lives of every single patient he touches. He is a beautiful soul with a beautiful purpose. His nurses are full of love and wish nothing more but full recovery for each one of us as they try their best to comfort and calm the desperate. Every person, doctor and event unfolds so perfectly for our transformation that you won’t believe your eyes looking back. I am not fully recovered physically, but I know I will be. My body is a miraculous gift and the amount of pain it has released is nothing short of magical. I was completely bedridden, suicidal, miserable, doped up, kill me now… the lowest I have ever been and ever hope to be again. I am truly like a decorated soldier now, we all are. I saw slight initial improvement after my surgery, but I was starting from a real low so my life didn’t change all that much at first. Finally, at the 6 month mark real noticeable improvement swooped in to save me from my spiraling doubts and fears. I weaned from opioids to gabapentin on month 5 to try and escape the hope sucking effects of Vicodin…the gabapentin wasn’t much of an improvement in that department. On month 6 I went cold turkey (was my improvement a coincidence? I don’t know). All along I have been using Anodyne Infrared Lasers and supplementing with Nuphoria and about a million other things on a rotating basis. I am a little past my 15 month now and my transformation from bedridden to where I am now is crazy phenomenal. I have trouble bending and sitting still and bouncing around is off limits. However, the list of stuff I can do fills every fiber of my being with such elation and joy I want to burst. Before all this happened to me I was emotionally miserable; my soul was miserable. I would pray for contentment. I would pray that my anxiety and angst would go away. I was an absolute picture of a victim. This huge life event showed me my strength in a way nothing else could have. It has been the Hero’s Journey to say the least. Every one of us have become our own heroes. If you are still in the midst of battle you must find a way to trust that you will come through it. You must trust that your body created itself from scratch and it can recreate itself once more. Mostly, for me, the process was about the relationship I had with myself. I was mean to myself. When I was at my lowest I told myself that I would never get better. I dwelled on missing my child’s childhood and other completely terrible feeling thoughts. I never encouraged myself, I only discouraged. At some point that became a practice I could no longer bare. On that day my mental, emotional and physical healing truly began. I started cheering myself on. I started treating myself the way I would treat my daughter if she was going through this. I turned away from any thought that told me I didn’t deserve to heal and wouldn’t. Perhaps that was at the 6 month mark? The change was subtle at first and so it is hard to determine. I can tell you that as each month passes I continue to improve in every way possible. I love my body. I love my life. I love my family. I love Dr. Feigenbaum and all of his staff. I love the universe and God. I love. I love. I love. I want whoever is reading this to know that one day you will be singing to cows and hugging tress and dancing around in pure bliss because you too will have survived this harrowing journey and lived to tell the tale of transformation. I believe this has happened to each of us for a reason and that we all share some sort of common thread in our journey. I love each and every one of you as if you and your family were my own. I embrace and encourage each of you. If there is one token of advice I could pass along to ease your path let it be this… Keep F$%#@!$ Going. Love, Sheryl

It’s been 16 months since my Tarlov Cysts surgery with Dr. Feigenbaum. I had 7 of them. I’m finally able to walk more than 2 houses down and back. After adding a house or 2 every few days I can almost walk around the block. If nothing else it’s helping me with my stamina, strength and is just lovely to be out. Dr. Feigenbaum, please except this heartfelt thank you for the surgery, giving me my life back and everything you did for me afterwards. Dr. Feigenbaum is a gift to us all with this horrible debilitating disease.

I guess the symptoms started about three years ago and I wrote them off to old age and due to some construction accidents from years ago. I first noticed the back of my thighs cramping badly when I walked upstairs. I didn’t realize it was a symptom, but when sitting for very long like during meetings and training, I became extremely agitated from the pain in my low back. I think I may owe some apologies for the training reviews I wrote during this time. People don’t enjoy much while they’re in pain. My pain escalated, and walking upstairs or up a slight incline would reduce me to tears; there are a lot of inclines and stairs in construction. I escalated to the point where I could barely walk. I kept getting more and more symptoms: chronic nausea, chronic diarrhea then chronic constipation, and my blood pressure was over 200 at times; I couldn’t urinate very effectively; sitting and standing were impossible. I went to two different orthopedic doctors and two different Primary Care Physicians. I was told I might have an ulcer and several mildly bulged discs but nothing that should be causing me a great deal of pain. My ortho sent me to another ortho to have him look at my hip thinking that was causing my pain. That ortho said I had some hip problems but it shouldn’t be causing the pain I was having. He sent me to another hip doctor but I didn’t go. I got a copy of my radiology report and started researching. I had a number of issues but nothing seemed to jive until I searched for tarlov/perineural cysts. Bam, there were my symptoms lined out for me. You cannot web search Tarlovs and not find Dr. Frank Feigenbaum. I am grateful for that. He treated my cysts in July. I am still recovering but am getting better. I thought I was going to be like that for the rest of my life. See that bike in the picture? I hope to be riding again by Spring. Before Dr. Feigenbaum and his staff came along I had no hope of riding again. I was on the verge of selling it. It’s collecting dust in the garage now but not forever.

Hello, my name is Ruchi and I am from Las Vegas, NV. I was diagnosed with a sister cyst of Tarlov in 2013. The neurosurgeon in Vegas told me that I have to live with it and there is nothing which could help me. I went under depression because of excruciating pain at my tailbone, I was not able to sit more than 20 minutes and nerve pain going into my right leg was horrible. It took my Docter at least a year to discover that I have a cyst in my spine and also I was told by my pain management doctor that the pain is in my head . So I started googling about my disease and came across Dr. Feigenbaum from Dallas. When I talked to him on the phone, I couldn’t believe that he actually understands my pain and all the symptoms. It took me a while to decide on surgery, but finally I said yes for the surgery and November 3rd, I flew to Dallas, met the Docter for the first time, and November 4th he performed the surgery on me. The staff at Pine Creek Medical Center is very nice. Dr Feigunbaum is an angel. I am pain free and back to normal life. He actually had to reconstruct my sacrum and took my cyst out. Thank you Dr. Feigenbaum 🙏

April of 2016, I woke up with pain going down my leg and into my back, making it difficult to walk, sleep or get comfortable. At first, the thought was lower back disc herniation, but the MRI did not support that finding. The next doctor thought it was hip/muscular, but the next MRI did not support either. Meanwhile, the pain continued and I found it difficult to stand after sitting for a while in a plane or in my bosses office; there was difficulty sleeping and pain that radiated down my thigh. I finally went to a pain doctor, who looked at my films and showed me a tarlov cyst. He scheduled a nerve block to see if we could determine if the cyst was the cause of my pain. After I woke up, I had no pain for the next 8-10 hours, and I was happy to know finally what was causing my pain. He referred me back to my Orthopedic Back doctor who said I needed to go to Dr. Feigenbaum. I did, and then after my initial visit, found out I had two of these cysts, and decided to go ahead with the surgery. My surgery was this past May, and I must say from the moment I woke up, I have never felt any pain like I had for the past 1 1/2 years. I haven’t taken any medication for pain or nerve pain, and I am working out again, to rebuild my strength and stamina. My head is clear of all of the medicines, I can sleep without waking up all night long and I can function normally in my life. I am very thankful.

Dear Dr. Feigenbaum, I am so blessed to have had the expertise of Dr. Frank Feigenbaum when he performed a very complicated procedure that involved the sacro-spinal canal. I had multiple, large, intra-sacral meningeal (tarlov) cysts within the canal that caused sacral nerve root compression. This area was extremely thinned out due to the sacral lamina erosion by the cysts in the spinal canal. To finally find an end to such horrendous nerve pain is unbelievable to say the least. This surgery was totally successful and I now have my life back again!! I had such horrible nerve pain that began in June of 2016 and was so debilitating. The pain could last from seconds to minutes and several times it lasted for hours that it seemed there was no end to the pain. I could only describe it as “an electric shock”, a “lightning bolt”, or sticking your finger in an electric outlet or socket as it went ZZZ, ZZZ, ZZZ or zap, zap, zap. It took my breath away each time & I spent moments in prayer begging for it to go away. I normally have good pain tolerance as I deal with the ups and downs of MS along with FMD (fibromuscular dysplasia) and chronic Lyme. Since my surgery date of January 2017, I am so elated that I have NO nerve pain (except for only 2 days in a row of short, light twinges) I am so thankful and grateful to Dr. Frank Feigenbaum for an effective and outstanding repair of what could have been a lifetime of Hell. He worked on 6 Tarlov Cysts with 2 of them causing nerve root compression. Those that know me to be a “go-get-um”, “fix it” and “get ur done” type will now be dancing with me on the docks of Walloon Lake as I am now “back, walking” in those shoes. I give Dr. Feigenbaum a 10 out of 10, he is an amazing physician!!!! FYI, Pine Creek Medical Center was fantastic as well. From the bottom of my heart, thank you Dr. Feigenbaum!

I had surgery on 4 Tarlov Cysts in February 2016 after years of hip and leg pain and then closer to my surgery date, numbness in my foot and toes. After surgery with Dr F I can do almost anything again and most days have no pain at all. My lower back does pain and I still get tingling in my legs if I overdo things, but I am walking, gardening and generally living life again, thanks to Dr F. Also the aftercare I have received from Debbie via email has been fantastic. Nothing is too small an issue for her to answer and she replies very promptly, even on the weekend. So thank you Debbie and thank you Dr F. Also the care we were given in Cyprus was wonderful from the time we arrived until the time we boarded our flight to come home.

I had suffered with Tarlov Cysts for almost 5 years. I had been to several doctors who told me nothing was wrong with me and they had no explanation for my pain. Once Dr. Feigenbaum looked at my MRI he told me I had 5 cysts and that I was a good surgical candidate. I had surgery in February of 2017 and I am starting to get my life back. Dr. Feigenbaum has been able to give me hope again. I highly recommend Dr. Feigenbaum to anyone suffering from Tarlov Cysts.

If you have come across this website it is because you or someone you love has been diagnosed with Tarlov Cysts or some other kind of rare Spinal Cysts. You have probably been told by many specialists that there is nothing that can be done for you, but that is not true. For more years than I care to remember and more neurosurgeons than I can name, I was told that my Tarlov Cysts were incidental and could not be operated on. I was told that they were not the cause of my chronic pain. I had some other issues that were showing up on my MRI and so all my doctors concentrated on those minor issues that ended up not being the cause of the pain. I had several epidural steroid injections with the last two not even touching the pain. After doing some online research I stumbled across Dr. Feigenbaum’s website. I read all the information and patient testimonials and decided to contact his office. I filled out the paperwork and mailed it in with my MRI and waited. When I got the call from Dr. Feigenbaum and he told me that he could actually help me I was amazed. I had to have him repeat it because everyone else said there was nothing to be done. The only down side to the whole thing was that I had to travel to Texas for the procedure. I live in Maine so it wasn’t someplace I could just drive too easily. When reading the MRI, it looked like I only had 2 large cysts in my Sacrum, but after Dr. Feigenbaum opened me up, he found a cluster of 5 large cysts with two more in my pelvis. The cysts had caused quite a bit of erosion to my Sacrum which had to be reconstructed with what Dr. Feigenbaum calls a “man hole cover”. This will take 2 years to absorb into my body, but the results will be a very strong Sacrum again. I still have the cysts in my pelvis, but at this point they are not causing me any pain or damage. I had the surgery 8 months ago and I feel like I have my life back again. My pain is almost completely gone. I only needed to use half of the pain meds that I left the hospital with and now only need NASAID’s once and a while. My migraines have decreased 90%. I can sit, stand, lay down, and walk for as long as I want to but prior to surgery these things could be torture for any length of time. I highly recommend this procedure to anyone suffering with Tarlov Cysts. Dr. Feigenbaum has the best staff and I had the best care at Pine Creek Medical. Prior to surgery, my primary care doctor was going to start the process of signing me up for total disability — that is how bad I was. He just recently gave me a note telling my employer that there was no reason I couldn’t work 40 hours again! So to Dr. Feigenbaum and his entire staff — Thank you so much for doing what you do and giving people pain free lives again!!

I had a 1.9cm Tarlov cyst on the left S1 nerve root, deep inside my sacral cavity. This caused bone erosion and nerve compression resulting in the tumultuous nerve pain you all know too well. I had been in dire pain for about two years prior to my surgery and had been out of work due to the pain for over a year.

12/17/09 is the day I was reborn. Although the first two months of healing after surgery were probably the hardest to deal with during my whole Tarlov life, I still consider this single action by my hero, Dr. Feigenbaum, as the point in time where I gained my life back.

Here are some of my proudest benchmark moments:

– 3 months post-op: Returned to work full-time (sitting!), skied down a black diamond

– 7 months post-op: Drove a Penske truck across the country from California to Ohio in 4 days, averaging 12-14 hours of driving a day, and even loaded and unloaded two huge trucks

– 8 months post-op: Played in my old softball league (and continued playing in a league yearly)

– 9 months post-op: Went white water rafting for 6 hours in class V/VI rapids (this has been an annual trip ever since)

– (Almost) 6 years post-op: Went skydiving
I cannot say that I am back to 100% compared to how I felt before the Tarlov pain, but I can say that I have 100% of my life back. I no longer am limited by the residual pain left behind. My affected leg still randomly hurts, throbs, cramps, spasms, etc., but it is VERY minuscule compared to the pain I was living with prior to surgery. Throughout the past 4 years, I have often worked 12-16 hour days sitting at a desk, and although sometimes bothersome, the pain never becomes impeding.

So to Dr. Feigenbaum, I would again like to express my most sincere gratitude for your research and interest in this rare disease. Thank you for taking the time to develop new and effective treatments to give your patients their quality of life back, instead of telling them to âlearn to cope with the painâ, like so many other providers have done. My children are grateful to you as well for giving them their mom back.

To those who are still suffering and feel there may never be a salvation for them, please don’t ever give up. Be a fighter because your life is worth it and you can regain control of it.

Lesley and I fought this battle together.
After much frustration dealing with close minded UK consultants we contacted AIMIS, spoke to Dr F and Debbie West, and for the first time had a team that took ownership of Lesley’s condition.

We were fortunate that an opportunity for surgery in Cyprus arose quickly, and off we went. Everything about our trip to Cyprus was first class but at the end of the day a successful surgical outcome was our goal and, my word, did the AIMIS team exceed our expectations. I am aware that we have been very lucky, in that Lesley’s recovery 6 months post op has enabled her to returne to 95% of the Lesley I knew pre op, and for that, both Lesley and I, and our family, will be eternally grateful.

We are now proud to act as ambassadors for AIMIS in the UK and hope some day to motivate a UK neurosurgeon to get on a plane to Cyprus and see for himself / herself what the AIMIS team have to offer.

Lesley’s condition has opened our eyes to the suffering that many people have to cope with on a day to day basis and wish Dr F and his team all the very best in the continued fight against TC’s.

To finish on a lighter note – when we contacted our Doctor to arrange for our 6 month MRI follow up, we received a response from the radiologist to tell us that they would not be carrying out the scan because the TC couldn’t possible be the problem. Sometimes you just have to laugh!!

Our thoughts are with everyone out there fighting the pain associated with TC’s on a daily basis – there is hope – it’s name is AIMIS.

Thanks Dr F, Debbie and the whole Cyprus AIMIS team.

Submitted October 2014

I had surgery with Dr. Feigenbaum 7/12/2012 in Dallas, TX. I would like to start by saying how wonderful Dr. F was before, during and after! I was diagnosed with a TC when I was only 17 years old after a car accident, for 9 years I saw Doctor after Doctor and tried treatment after treatment until I finally saw Dr. Feigenbaum and let me tell you, this surgery changed the my life so much. Before surgery I could not walk 1/2 mile without crying, I could barely sit for 15 minutes and had a hard time driving 30 minutes to the next town even with all the meds I was taking. After surgery recovery was very slow and challenging at times but I just knew I had made the right decision…. Well, I was right, fast forward 2 years and in July of 2014 (last month) I had taken a 2 week vacation to Maui, HI! Yes, flying from Florida’s east coast was very doable as long as I stretched. During my trip I did a good bit of mild hiking and realized I only needed the occasional Tylenol or Motrin…. Then I decided to hike Haleakala Crater from 10k elevation, hiked appx 2,00ft down, about 7 miles across and appx 1,600ft back up. 11.2 mile trail in only 6 1/2 hours! I couldn’t believe it! This was the ultimate pay off from surgery 2 years ago! I still have some pain when I lift something heavy and still have some numbness and sciatica. I have learned my limits and what to avoid, but never in a million years did I dream I would be able to hike!! THANK YOU DR FEIGENBAUM I feel like I can move mountains for the first time in my adult life!!!

Submitted August 2014

I can’t express my gratitude with words for giving me my quality of life back. For once in 3 years, I can say I am living without excruciating constant pain. It has been about 3 months and I have noticed that 5 of the 7 days of the week are 100% pain free. The other 2 days are a reminder that there is a vulnerable âNewâ Roxanna, and I have to take it easy. For this past year to date, I no longer take strong pain meds, only muscle relaxants for the muscle spasms. Although I still have some neurological symptoms, some pre and others post-surgical, I would not have changed my decision to have the surgery, and I consider it to have been a success, not only for the fact that my pain is basically zero, but because my quality of life has improved greatly, and I am not feeling miserable any longer, this surgery has helped me regain self-confidence and a positive outlook on life. I can continue making other people happy by living my passion of cake design, and growing my business.

I cannot bless you enough for your talent, dedication and passion for your career, and making life more manageable to those of us affected by this disease, where others have failed us. Thank you for believing we have a chance to live with dignity (tears running). Thanks to your team, who have dealt with us through thick and thin and for their infinite patience!

Thank you for changing the history in the field of Neurosurgery, were not many have had the courage to.

Eternally grateful,
Roxanna Hernandez

Submitted July 2014

I too was told for many years that my meningeal cyst was not causing the pain, numbness and inablity to function normally even though I had 60% bi-lateral stenosis, degeneration of 2 discs and intense pain. I am a Medical professional and did not like what the Orthopedic Surgeons kept saying and suggesting “more and more epidural injections”, so I called Dr. Feigenbaum. After meeting Dr Feigenbaum I was sure that what he said after reviewing my MRI’s and talking to me about my symptoms was right. I scheduled my surgery as soon as possible and have never regreted my decision. I had my surgery in Feb of 2009 and almost immediately was feeling better. I was up and walking after the 24 hour period and out of the hospital 3 days after my surgery. I recovered quickly and went back to work 3 weeks later. It is now 5 years later and other than some residual nerve damage and a few issues with arthritis you would never be able to tell I had the surgery or was to a point where walking was impossible. I highly recommend Dr Feigenbaum to people who have been told that Tarlov/meningeal cysts can’t be causing their pain and problems before errosion of the vertebrae and nerve damage gets worse.

Submitted June 2014

Today marks 2 years for me! 2 years ago May 12 2012 I finally made it to Kansas. It was worth the wait. I lived 90% of my time in bed. Pain so unpredictable that it was exhausting. I finally today can say my life is back 90% normal. Wearing high heels again. Dancing and walking and not being in bed all day long. I couldn’t believe my eyes when I received my operative report. I had read about bone erosion and to see that I had this setting in. But it didn’t win. Dr F and his staff of amazing professionals were top knotch. I never was afraid to have this surgery. All those many many doctors I had been too telling me DO NOT DO THIS and I had faith. I mean what was the better option? There was no better option. I took my report to those doctors and showed them the reality of my tenacity. And they were pleased. Yet still not on board. I know this. My life would not be what it is TODAY if I had not trusted my gut and well hey once you talk to Dr F and watch his videos how can you not get this done. No longer having right leg pain so bad that I would cry. Or not sitting or standing for very long. One thing I will say in closing is about a point he made in his YouTube video. It’s a family disease. It causes depression. It’s hard on everyone and that is the truth. But I had lots of support and now life is great. I get to be involved in my sons high school milestones. And Dr Frank words can’t express the gratitude and how much I can’t thank you enough to devote your life to so many people in this world and now they can live productive lives and enjoy just living. Laughing and Love!!!

Submitted May 2014

My son was 12 years old (2012) when we discovered he had a large meningeal diverticulum at his sacral spine. The MRI showed that it extended from L1 to almost the bottom of his sacrum. The cyst was compressing his sacral nerve roots and had already eroded some of his bone.

Reta Hiers from the Tarlov Cyst Foundation led us to Dr. Feigenbaum. My son had surgery 16 months after diagnosis. Being out of state, it took some planning and we had to ask for authorization from our insurance. We were apprehensive to have this major surgery done with a doctor we never met in person, however we trusted Reta. We had a phone consultation with the doctor in which he asked to speak to our son as well. Afterwards we felt that it was in our son’s best interest to have the surgery done before any other damage would occur.

Our experience with Dr. Feigenbaum and his staff was excellent. This was a very delicate surgery and Dr. Feigenbaum performed it with expertise and precision. Our stay at Medical City Hospital and the care we received there was very good.

It is now 6 months post-op. My son is experiencing some nerve sensations such as numbness, tingling, burning, etc. We were told these are normal feelings that will subside over time. We trust that he will continue to improve as time goes on.

Overall our experience with this surgeon has been very positive and we would highly recommend him to anyone who has a Tarlov cyst or meningeal diverticulum. We are truly grateful to Reta from the Tarlov Cyst Foundation for leading us in the right direction and to Dr. Feigenbaum and his staff for helping our son.

Submitted January 2014

I would like to thank Dr. Feigenbaum and his entire staff for giving me back my life! In March of 2011 I began having pain in my right hip and leg. My primary care physician ordered a MRI of my entire spine which showed my double major scoliosis and some disc issues related to that condition. I was told that my pain was not related to my scoliosis and referred to pain management. This began a long journey for me, one that led me to multiple doctors in varying fields, but one after another were puzzled by my condition. After months of frustration on one of my many sleepless nights, I decided to put my MRI study into my laptop and read the radiologist report. It was then I discovered the cyst in my spine located at the S1/S2 level. I viewed the images which clearly showed a large cyst and was puzzled as to why this was never mentioned by any of the physicians I had visited.

I traveled to meet the radiologist who had initially read my report, who told me that I indeed had a cyst in my sacrum but that it would NEVER cause me pain. I described my symptoms to him and told him that there had to be an explanation for my condition. When I asked him what his recommendation was, he told me I should go back to my PCP and ask for a psychiatric evaluation! I was angered, but refused to stop looking for the cause of my pain.

By the beginning of 2012 I was suffering from unbearable pain. It was impossible for me to sit for longer than a few minutes and I was steadily losing my quality of life. I had already left my job (8 hours a day at a desk which was impossible to perform) and was no longer able to participate in my children’s school and recreational activities. My marriage began to suffer as well. I had been told over and over again that I had a chronic pain condition and my best option was to accept that diagnosis and make the most of my life.

One night I discovered Dr. Feigenbaum’s website, and the link to the Tarlov Cyst Foundation. After reading the list of symptoms I realized that it was not only possible, but likely my symptoms were cyst related. I called the Dr. F’s office the very next business day and scheduled an appointment.

I met with Dr. F in April of 2012, and began the process of healing. After reviewing my tests and symptoms, he presented me with my options. I knew that my health would continue to decline if I did nothing, so I decided to start the necessary paperwork for surgery. The risks were clearly defined for me, but I pressed on as my health seemed to deteriorate with every day that passed. Finally, the last day of July of 2012, I had surgery.

Dr. Feigenbaum and the entire staff at St. Luke’s Hospital in Kansas city were nothing but supportive and instrumental in my recovery. I noticed several improvements within days of my surgery, the most noticeable being the return of feeling in my groin area as well as the return of strength to my right foot. Before the operation I had continuous tingling and numbness in my groin and my right foot would drag when I walked due to loss of strength.

My post surgical pain was easily managed by pain medications, and within three weeks I required less pain medication than I did before surgery. I have experienced continuous improvements since then. It has now been nearly a year since the operation, and I have recovered all of the quality of life I had lost. I can now sit as long as I wish, walk as far as I want, and live free of pain medication! Had I not followed my instincts and sought the care of Dr. Feigenbaum, I would be living on pain pills and relegated to live the rest of my life as a shadow of myself. Now I am 34 years old, remarried, and getting ready to embark on the next half of my life as a happy and healthy woman! Were it not for the dedication and skill of Dr. F, who knows where I would be?

Don’t give up if you find yourself where I was…there is hope and you have a future!

Submitted July 2013

All I can say is “thank you, thank you, thank you Dr F and staff!” After nearly 7 months of severe Tarlov Cyst pain, and an ineffective Fibrin Glue Injection at Johns Hopkins, I am up and walking 30-45 minutes a day with no tailbone pain/pressure, no numb legs, and no sciatic nerve pain. On May 11, 2012 I felt like I met the miracle worker! Dr F was on time, very cordial and immediately looked at my MRIs and noticed not just the 1 Tarlov Cyst I was told I had by other doctors and surgeons, but 3 Tarlov cysts. After performing some in-office tests and asking a series of questions he concluded the cysts were definitely the symptoms of pain and recommended and explained the Tarlov cyst treatment procedures and recovery restrictions. Liking Dr F immediately, and feeing 100% confident he is THE BEST in this field, I went home and consulted with my husband and family, and called to schedule surgery the next day. Everyone on his staff was extremely professional and very kind. His surgery coordinator Laura could not have been any more helpful and nicer. Dr. Feigenbaum and his staff actually started my surgery almost an hour early. They explained everything crystal-clear to everyone with me, and made sure that not only I, but also my mother, had no questions and eased any anxiery or fears we may have had pre-surgery. My recovery was much easier than I was expecting. The staff at Pine Creek were fabulous and attended to all of my needs – most of which were pain med requests. I was expecting to want/need heavy pain relievers every four hours to be comfortable. However, the pain was much more manageable and was different than my pain before surgery. I had no pain/pressure in the tailbone, no numbness in my legs/feet and no lower back pain or sciatic nerve pain. The main pain I felt was near the incision site, which was to be expected. I was up and walking the 2nd day after surgery, and was released on Friday. I am obeying post-op surgery recommendations to a T and so far this has been much easier than I expected. I would tell anyone I know who is going through any TC pain to not even question Dr. Feigenbaum’s recommendations. He is definitely the best in this field, and a life-saver who has given me my life back. So very very worth it! I am walking 30-45 minutes a day, able to sit 45-60 minutes with no tailbone pain (more muscle back pain due to inactivity for 7 months), and I can feel my calves and feet again! I have not taken any pain medication since August 25, 2012 (ten days after surgery). Occasionally at night I take 2 Advil, but more for sore muscle pain from slowly getting back into more movement that my body was deprived of for so long prior to surgery.

I will be forever grateful to Dr. Feigenbaum for giving me my life back. I am one year out from having surgery to drain and wrap three large Tarlov Cysts at the Sacral level and am doing wonderful!!!! After struggling for several years with debilitating and radiating pain which caused me to go from extremely athletic to hardly being able to walk, having no luck with conventional treatments, and having no one able to truly tell me what was going on, I did my own research and found Dr. Feigenbaum through the Tarlov Cyst Foundation web site. I called his office and for the first time felt like someone understood what I was dealing with. His staff was truly remarkable, and went above and beyond my expectations. I made the long trip to Kansas where I had surgery. I went from being in excruciating pain to walking around the hospital 24 hours after surgery with only surgical pain. I would recommend Dr. Feigenbaum to anyone dealing with Tarlov Cysts, and I truly believe that he is phenominally gifted. Thank you Dr. Feigenbaum, I will be forever grateful!

I do not know where to start to tell you about my experience with Dr. Feigenbaum and his angel of a nurse assistant Debbie West but if there where a book written about how to treat a patient these two would be the prototype used. From the moment I contacted them I have received nothing but the most professional and caring response. Finding a surgeon who understands the pain these cysts cause led me to Dr. Feigenbaum. I had surgery in October 2007 and truly have my life back. I am not yet 100% percent but the difference in my pain level pre and post op is remarkable and I feel there is healing still to come. When I read my operative report and saw what had been done on my spine I knew I had been blessed to find such an incredibly skilled surgeon. Post operatively most of my contact has been with Debbie West and I cannot tell you the support I have received. It has been 16 months since surgery and still I know they are there for me if I need anything. If I ever again needed surgery on my spine back to Dr. Feigenbaum I would go in a heartbeat. Kansas City was a wonderful city to visit and the people there are true Midwesterners greeted always with a smile and happy to be of service to you everywhere you go.

My whole world, my entire existence changed in an instant. That instant occurred on June 20, 2009. I often state when I share my harrowing ordeal that I only wish that I could take those 30 seconds of pulling my daughterâs dresser back! Then I would not have had to endure the unrelenting discomfort of the Tarlov cysts or the arduous journey of getting the correct diagnosis and treatment. But there is silver lining… I would have never met such a wonderful group of individuals at Midwest Neurosurgery! Dr. Feigenbaum truly has given me my life back! I am by no means done with my healing and pain is still my constant companion, but it is diminishing with time and I will be healthy again!

I am 48 years old, a mother of three children, a wife of a teacher and high school track coach, and work 20 hours/week as a sports medicine physical therapist. I did not have time to be ill, let alone knocked out of daily life!

I was fortunate enough to be diagnosed correctly by my family doctor; he read my MRI, which besides the Tarlov Cysts, was clear. He was not familiar with the cysts, pulled up the information on WebMD and it was my life in print! My journey from the initial diagnosis to Kansas City was almost a year. I’m certain that many of your stories are the same… mis- diagnosis, humiliation that nothing is wrong and you will have to live with the pain, fighting with the medical insurance and long term disability companies that are not aware of the rare Tarlov cysts! Well, if you have made it to this site then you are on your way to recovery!

I believe that everything in life has a lesson, a reason, and I have tried to look for those lessons in this chapter of my life. First, I believe that as much medical information that you can obtain to assist you in diagnosing your condition is essential. I believe that you need to be your own patient advocate, especially in such a rare diagnosis as Tarlov cysts. Even with my medical background and the patient reassurance of Dr. Feigenbaum and the medical staff, I am amazed how very SLOW the recovery is. But for me, there was no alternative… I could not have lived in that debilitated state that I existed pre-op and I didnât want to live the rest of my life on pain pills and injections!

I can state unequivocally that Dr. Feigenbaum (and medical staff) has given me my life back! You are in expert, loving hands under his care. Dr. Feigenbaum was one of many physicians that I saw for consultation. He was the only one who had heard of and understood my plight. My best decision of my life was going to Kansas City for my care and treatment. And I received just that… magnificent care and life changing, healing treatment!

I never had back problems or pain my entire life. Then, at age 51, I suddenly found myself with lower back pain. I went to my doctor to have a physical, and a CT scan found a large cyst in my sacrum.

With the help of the internet, I found Dr. Feigenbaum and his nurse Debbie West. They both discussed my condition with me on the phone after Dr. Feigenbaum received the results of my MRI. I had a giant sacral meningeal cyst which was over 5cm in size and had eroded my sacrum until it was eggshell thin. Although my pain was not severe and not disrupting my life, I decided to have Dr. Feigenbaum operate on me because I didnât want the cyst to grow anymore. I didnât want to find myself in severe pain in the future.

I had surgery on January 13, 2009. I was up walking the next afternoon and doing well. I only needed pain medication for about 3 weeks after surgery, and since then I have not had to take any pain medication. Now, 3 months after surgery, I feel great! I know my back is still healing, but I lead a very normal life and I am much more comfortable than before surgery. I am even back to riding my bike!

I am very confident that Dr. Feigenbaum is one of the best doctors in the US for this type of surgery. I am very grateful that he and his nurse Debbie have concentrated their work on these types of cysts in the sacrum, because without them I would have been fearful to have another, inexperienced doctor operate on me. They are great and I am looking forward to going back to an active future.

I am a 50 year old female and have worked out most of my life. A few years ago, I started to have pains in my left hip that would some times go down my leg. I kept thinking that I was pulling my sciatic nerve so I would lay off my work out a little and it seemed to subside some. Over time, laying off my workouts were NOT making it any better. I finally had an MRI a couple of years ago and that is when my primary Doctor said that I needed to see a specialist as I had what was called a Tarlov Cyst between S1 and S2. I was fortunate as there was a Tarlov Cyst specialist in our area so I made an appointment with Dr. Feigenbaum.

I met with his staff and they were very helpful and explained what this type of cyst was and what kind of damage it could do long-term. There were a couple of things I could try but surgery was the most likely option to take care of this on a permanent basis. I decided to NOT have surgery at this time and just see how things progressed. I had a kidney transplant many years before so was not anxious to have any other type of surgery if I felt it was âelectiveâ and I had NOT decided that it was necessary at this point. Over the next year or so I experienced, more pain, I could hardly bend to the ground without major discomfort, the pain and/or numb feeling in my hip and leg and now foot was getting worse, among some other issues. I had to stop doing any of my weight lifting on the lower body which was very sad for someone who again, had always worked out. I was able to continue to walk on the treadmill almost daily but that was about it. I had to have the incline on ZERO now, as I could not do any kind of hills, which also meant I could not do this outside anymore, unless I was at a track,…BORING!

I decided that I should probably go back to see Dr. Feigenbaum again and have another MRI to see if things had worsened. The results were that they had. I also already had some tailbone decay from where the cyst sat. It was about an inch in diameter but I was fortunate there was only one of them! Because of all the things that were worse now AND all the things that would likely happen down the road, I decided to go ahead with the surgery. I had surgery September 18, 2010.

RECOVERY,…I had my surgery in the afternoon and was ready for the next 24 hours to go by, so that I could get up and walk!!! The Doctor and nurses followed the protocol for sitting me up gradually and then allowing me to try to walk. Again,…I had prepared mentally for this moment and KNEW that even if it were painful, which I was told that it would likely be,…I could do it! My husband helped me with my IIPOD, the particular song I was to walk to was ready to go and away I went. I am not saying it wasnât somewhat painful that day and the next few weeks to come, but it was NOTHING like I thought it could be. I believe that my determination and the fact that I did follow âDoctors ordersâ regarding lifting nothing and no bending for the first month, helped to get me ready for the months ahead.

TODAY,…About a month ago (at 3 months post surgery), I began to run again. I even sent Debbie West a picture of my on the treadmill for proof!!! J I now am running for about 30 minutes, every other day. I have very little numbness in my hip, leg and/or foot. The other issues that I had, have subsided. My energy came back around 2 months post-op. I plan to run in a 5K and a 10K by the end of 2011. I plan to begin lifting weight again in a few more weeks as I was told not to do that yet. Life is looking SO much better! Without having this surgery, I would still be in pain and my life would be limited. I was to a point, where that was not an option.

The only real thing I continue to have a problem with is sitting. It hurts to put pressure on my backside, where the surgery was performed. It is about a â5â on a scale from 1-10. I am anticipating that over time that will gradually get better but even if it did not, I am in WAY better shape than I was before so I do not regret for one second, my decision to have the surgery.

Dr. Feigenbaum and his staff have been wonderful. I would highly recommend their services to any patient that is suffering from Tarlov Cyst disease to at least go and talk with them. They will let you know your options and then you decide how you want to feel for the rest of your life. I am thankful and blessed!

I wanted to write about the tremendous care I received from Midwest Neurosurgery in treatment for my Tarlov cyst.

Before October 2009, I lived with a large Tarlov Cyst for over 20 years. The cyst had grown in size to 3.5cm and I had been experiencing very severe symptoms including severe pain and frequent violent headaches that had on multiple occasions resulted in inpatient stays. It took over 30 doctors to finally diagnosis my cyst correctly, which finally happened in September 2009. Once diagnosed, I was left with very little encouraging next steps and no one seemed to have any real experience treating symptomatic Tarlov cysts (and I live in Los Angeles).

The beginning of “getting my life back” started in November 2009 when Dr. Feigenbaum called after reviewing my films. Finally, I was able to speak with an expert that could describe my cyst exactly and could plainly identify with me the symptoms I was experiencing. I immediately moved forward with scheduling surgery.

I had surgery with Dr. Feigenbaum in February of 2010.

That surgery changed my life.

Almost 1 year later, I have not had a single headache of any kind since surgery. My overall condition continues to improve even today. Prior to surgery I was missing weeks of work because of the cyst. Last year, I had no missed sick days since my initial recovery from surgery.

I can also tell you that the entire Midwest Neurosurgery staff is excellent. Dr. Feigenbaum is of course “the MAN” when it comes to this surgery and he is friendly and kind to boot. Debbie West is a very caring nurse that makes the perfect teammate for Dr. Feigenbaum. She continues to go out of her way to provide outstanding patient care long after the surgery is over. The office staff is helpful as well. The surgery experience overall also exceeded my expectations at Heartland Surgical Specialty where I had my surgery. From speaking with other patients I understand that the care at Research Medical is also excellent.

I am eternally grateful for Dr. Feigenbaum and Debbie and what they did for me. The world could use more medical professional like them.

I am nine months out from surgery and feel I have improved at least 85% so far. Before surgery, my life was – medications, pain and inactivity. Now I am pain-free most days. I only take ibuprofin occasionally when I overdue certain activities.

I can’t stress enough, how important it is to have a top-notch surgeon like Dr. Feigenbaum performing such a delicate surgery. I have nothing but positive things to say about him and his staff. I will always be greatful!!

They Believe…Trust Them…Live Again.

FOREVER GRATEFUL

A like many others, I will always be forever grateful to Dr. Frank Feigenbaum for his commitment and outstanding medical expertise with the rare disorder of Symptomatic Tarlov Cysts. I like to take this time to recognize and honor Dr. Frank and his team at the Tarlov Cyst Institute, Debbie West, Teresa Lanker and Laura Abshire. You are all exceptional, highly efficient and most of all compassionate individuals that have touch my heart.

I am a 50 year old women from Toronto, Canada whom was subjected to both the physical and emotional pain and suffering throughout the relentless struggle of outsourcing an accurate diagnoses and treatment for my Tarlov Cysts.

In 2006, imaging of my spine reported I had incidental bilateral sacral Tarlov Cyst of no significance. Over the course of four years, I was referred to and/or saw several doctors. Orthopedic Surgeons, Rheumatologists, Hematologists, Pain Specialists, Neurologists, and Neurosurgeons. I had difficulty finding a recognized Specialist in Tarlov Cysts and their treatments with enough expertise to offer me surgery. I had undergone countless CT Scans, MRIâs, Nuclear Bone Scans, X Rays, Blood Work, CT Myelogram and two Blood Patches as a result of complications of my CT Myelogram. I endured massage therapy, physiotherapy and a numerous of different medications to potent narcotics all of which did not relieve my relentless, agonizing pain.

Over the course of these four years, house and bed bound most of the time, all doctors kept telling me my TCâs were not the source of my pain and dysfunctions. Internet options at that time were very limited, yet slightly growing over the years. I had the privilege of corresponding with Reta Honey Hiers, President of the Tarlov Cysts Foundation whom notified me of Dr. Frank and the Tarlov Cyst Institute. Dr. Frankâs unique qualities and expertise make him The Best and therefore I sent him all my background information and radiology images for his review. Dr. Frank personally called me to speak of my Tarlov Cysts and offered me surgery. We spoke for almost 40 minutes and I was convinced that I was in good hands. I trusted Dr. Frank.

Through my perseverance, I applied to the Ontario Health Insurance Plan known as OHIP for a prior approval for an Out of Country Health Services claim to see Dr. Frank and have the surgery he offered me. I was denied twice and had to fight a yearâs battle with the Ontario Government through the Appeal Process. I was very fortunate to have Dr. Feigenbaum and his team help me through this fight. He supported me in my struggle to receive the best possible treatment for my Tarlov Cysts. Dr. Frankâs guidance, kind words, contributed letters for evidence and his personal conference call as a Witness into my 4 day Appeal Hearing was tremendously supportive and strengthened my case.

While in the hospital, shortly after my surgery, I received notification that I had won my Appeal and was granted Health Care Coverage for my surgery with Dr. Frank. Thank you Dr. Frank, I couldnât have done it without you. Together we have set precedence, for I was the first patient from Ontario, Canada who has been granted health coverage for Tarlov Cysts. Together we have paved the way for future TC patients seeking treatment.

On November 4, 2010, I had my surgery with Dr. Frank and throughout my 10 day stay in the hospital I was visited by Dr. Frank, Debbie West and Teresa Lanker on several occasions; I do believe it was every day. My extended stay was not due to any surgery complications but more so to stabilize my personal pain medication reactions. Everyone was always caring to my needs and were forever respectful. I have never had such an extraordinary team take care of me. Thank you for truly making my experience at the Research Medical Centre better than I had ever anticipated and I highly recommend Dr. Feigenbaum and his team to all Tarlov Cyst Patients. Dr. Frank is truly exceptional and unique for the surgery he offers is a scarce commodity. He displays a commitment to excellence for all Tarlov Cyst Patients.

Presently, I am 2 and one half months post op, and with a positive attitude believe Iâm doing just fine. Iâve learned to be more cautious bending, lifting things and of course sitting to long. Iâm finding that the key is to find the BALANCE and know when to stop, not to over do it, or I will pay for it later kind of thing. I believe each day that passes I am getting better and do see and feel a difference. I have lowered my pain medications and will continue to do so as time proves they are no longer needed. Presently, Iâm still at a dose that is quite higher than pre op but thatâs okay, I just had major surgery on my NERVES. It is to be expected sometimes, this is not normal spine surgery.

In closing, I am so very fortunate and will be forever grateful to have had the opportunity to meet Dr. Frank and his team and will not hesitate to revisit him again for surgery on my other Tarlov Cysts throughout my spine if deemed necessary.

Through the years I had a lot of consultations with different doctors and different therapies. To name but a few: physiotherapies, psychologists, neurologists, neurosurgeons, pain management, steroid injections and even 2 spine surgeries (done in Germany). I had a lot of symptoms. Either the doctors didn’t know what was wrong with my back and could not explain why I was having such a pain and also dysfunctions or they told me that everything looked fine on the MRI. After the 2 surgeries that were made here in Germany my symptoms worsened. At that point I was told that there was nothing on the MRI that explains my medical condition. There were 3 cysts, but these cysts do not cause any symptoms. I was advised to do pain management, because that would be the only thing that could be done for that moment. I had a lot of self doubts, I was insecure, because I was told there wouldn’t be anything that causes my symptoms. It is probably not necessary to tell, how depressed I felt. I didn’t wanted to take pain killers for the rest of my life (I am 22 years old) and I never was out of pain. I always had pain in my legs, back and buttocks. And it persisted, the only relief was to lie down. Of course this affected my whole social life and daily activities extremely. Every day was tiring and I kept staying at home most of the time. My home became my gilded cage because the pain forced me to stay at home. At that point I lost all my hope, confidence and my enjoyment of life.

I decided to do some research on the internet because I wanted to know if these Tarlov cysts could make symptoms. I read a lot of articles with interest. And somehow I got to the www.tarlovcystfoundation.org homepage. On this homepage I got to know a lot more about this disease and also found doctors who are able to treat them with success. This is how I found Dr. Feigenbaum’s address at the Midwest Neurosurgery associates. I decided first to write an e-mail and wanted to make contact with somebody who was able to give me information. Soon I became an answer from Debbie West. And in this first e-mail from her she was able to encourage me and brought back some hope. With her help I sent in the MRI on CD and some medical reports. A few weeks later I had my first phone call with Dr. Feigenbaum. I still can remember that moment as it just had been yesterday. The first time during my disease I felt to be understood. He asked me exact the questions that matched to my symptoms. When he told me I was a surgery candidate I felt nothing but happiness.

To everyone I talked to, at the Midwest Neurosurgery Associates, was very friendly and helpful. Especially Debbie West and Laura Abshire, they are wonderful ladies. Without them I wouldn’t have had the courage to do a surgery in another country. They helped me with every form my insurance requested and even to find a neat hotel. When I had my first appointment at Dr. F’s office I was very excited. This is such a friendly, passionate and highly skilled team, you recognize that in the first minutes, of how they deal with you and it really encouraged me because I found someone who believed me.

Surgery went well and also in the following hours I already felt better than before. In comparison to the surgeries I had before, I felt best and also best taken care of. The nurses were so kind and also made me smile. The whole atmosphere was encouraging. I am now feeling better than before and in my opinion it was worth it! This is also due to the mere fact that Dr. Feigenbaum and his high qualified staff brought back hope to me and gave back my enjoyment of life.

When you’re a Tarlov cyst patient don’t be afraid making contact with Dr. Feigenbaum’s team. You’ll receive the best medical specialist care and also you will be treated manlike. All in all Dr. Feigenbaum gave a lot more to me than just improve my symptoms. He helped me to get a social life again and the ability to look in the future and be fulfilled with delight.

Wishing you a lot of health and courage to defeat your disease.

Love, Eva

My name is Sherri and I live in Brampton, ON Canada.

In early 2010 I was diagnosed with 3 cervical tarlov cysts and 1 large sacral meningeal cyst that had already caused major sacral bone erosion and nerve compression with associated S2-S5 nerve damage.

When I was diagnosed no one in my Province was able to give me any answers, medical advice or options. Thankfully my research brought me to Dr. Feigenbaum and his amazing, informed and customer service oriented staff.

Within 3 months I’d supplied Dr. Feigenbaum with my MRI images and medical history along with a list of current and quickly developing symptoms. Dr. Feigenbaum called me and took his time explaining to me what he found in my MRI Images, and provided me with detailed information of what could or should be done.

Dr. Feigenbaum advised me that the largest of my cervical cysts measuring 1cm was located in a dangerously close proximity to my left vertebral artery. I was already aware of this, but even though I’d been told by other Surgeons that this specific cyst could not be treated due to the high risk of injury to the artery, a major blood vessel to the brain, Dr. Feigenbaum assured me that he has treated other cysts like mine and felt confident that he could treat this one as well if the need should arise. This answer brought with it an immeasurable sense of relief and he helped to diminish most of my fears associated with this specific cyst. Until Dr. Feigenbaum I’d feared this cyst could even put my life at risk if it did, or was growing. Now I felt confident in knowing I had choices.

Then Dr. Feigenbaum continued on to discuss my sacral meningeal cyst, which according to him was impressively large.

The cyst measured 6 x 1.5 x 7cm upon diagnosis and according to Dr. Feigenbaum had already caused major sacral bone erosion and extensive sacral nerve root compression.

He explained that the symptoms I’d listed matched perfectly with the effects that such a cyst would cause. Then he continued on to inform me that he believed the sacral cyst was more of a present danger if left to grow and he suggested I consider treating the sacral cyst first. He also suggested that we continue to monitor the cervical cyst for growth.

Dr. Feigenbaum explained to me, in detail, all of the risks associated with surgery if I should choose that route. At times I even felt as if he was trying to talk me out of it! Once he’d finished scaring me with the dangerous, surgical possibilities he took the time to ask if I had any questions.

My first question of course, was ok, now we know what could happen if I decided on having surgery, now I wanted to know what could happen if I didn’t have surgery? After a brief hesitation he advised me that over time, all of the same things that could happen during surgery could possibly happen if I didn’t have surgery and the cyst was left to grow.

I greatly appreciated his honesty and his straight forward, informed approach to all of my questions and decided then and there, yes, I wanted surgery.

In my mind surgery gave me hope. Without surgery I felt I had no hope and all I could look forward too was the inevitable, devastating development of the sacral cyst which would eventually make the pain unbearable and my mobility non-existent. So yes, I immediately chose hope.

The following months included health insurance applications to pay for the surgery, a long drawn out process in Ontario, in which Dr. Feigenbaum and his staff supported me every step of the way with answers, letters, phone calls and repeated MRI monitoring as we waited for payment options to show themselves and make this surgery, and my renewed hope of a better future, a reality.

In July of 2011 Dr. Feigenbaum went to Nicosia, Cyprus for his first round of surgeries with AIMIS Spine. Through a lot of juggling and negotiating, I was able to meet Dr. Feigenbaum and his staff in Cyprus and I will always be thankful to say I was the first of Dr. Feigenbaum’s patients to undergo Meningeal Cyst surgery in Cyprus.

During my time in Cyprus, under Dr. Feigenbaum’s care, with the assistance of his surgical Nurse Debbie West and the AIMIS Spine patient support team I was treated like royalty and my surgery was much less traumatizing than I could have ever dreamed possible.

I am now almost 4 months post op and I am doing better than anyone, even I could have ever predicted.

Immediately following surgery the sacral pain that had become part of my every day, for much longer that I could remember, was gone! The day following surgery I was surprised at my ability to feel sensations of touch in my right leg, a feeling I’d lost a long time before.

I still Iive with the normal, to be expected limitations of any 3 month post op patient, but I am slowly increasing my walking time and able to move through my days in a world no longer controlled solely by the fear of my limited and painful future. I am no longer restrained by the same, constant pain that had prior to surgery accompanied my every waking moment.

Today I am excited about my dreams for my future and now I not only have hope, I am living everyday within the gifts of hope that Dr. Feigenbaum had given me.

I am more grateful to Dr. Feigenbaum for the gifts he’s given me with his commitment, kindness and expertise, than any amount of money or words could ever repay.

Thanks to my own personal and amazing experience I will always confidently recommend Dr. Feigenbaum, to anyone faced with this scary, confusing, and unfortunately for us patients, misunderstood disease.

I honestly believe that Dr. Feigenbaums surgical experience in the face of this rare and devastating disease is a gift and blessing to many who feel blessings are no longer possible in our futures.

There are choices, and thanks to Dr. Feigenbaum and his staff I had an opportunity to choose a future with a lot more hope and a lot less pain.

Hopefully I won’t ever have to return for treatment of the other cysts, but if that need should arise I will again come to you with confidence and gratitude.

From my Grandson Khellen, My son Ken and the many others who have loved and supported me through this journey I would like to say once again…..

Thank you Dr. Feigenbaum, Debbie West, Laura, the staff of AIMIS Spine in Cyprus and the many other caring and dedicated staff who have made this dream a reality for me.

You’ve given me the best gift I could have ever received. An exciting, new chance at a satisfying and pain free future……

I will never forget, and I will forever be grateful.

Sincerely,

Two weeks ago on June 21st, 2022 I had my surgery with Dr Feigenbaum. Yesterday I was fishing with my husband on a beautiful Michigan summer day! Dr Feigenbaum treated 7 perineural cysts that were causing me extreme hip pain that traveled through my groin and down the back of my legs. My feet hurt terribly to stand up and I was experiencing bladder and beginning bowel incontinence. I could not get a neurosurgeon to actually even talk to me face to face in Grand Rapids, MI. And the nightmare of trying to get radiologists to read my MRI and report facts rather than opinions was incredibly frustrating and disappointing. I had a whole neurology practice refuse my referral to discuss my cysts and symptoms. The first office I went to sent in the PA who took one look at my MRI and said “I really think the Dr needs to see these” The Dr was suddenly “very busy” and recommended 30 days of PT. PT, of course caused more pain, after 3 days of trying it, they sent me back to the neurosurgeon. He again sent in the PA and I was given only the option of trying spinal injections to control my pain and they did not work. I researched myself and found Dr Feigenbaum. His many successes here in the U.S. and work overseas drew me to his office. I am so glad I chose him. The morning after surgery, I could tell already my hip pain was gone! I was pretty nervous to commit to the surgery and probably waited longer than I should have. I am so glad I had it done. I am still healing from the surgery, but already am feeling so much better. Thank you to Dr F. and your wonderful staff and the fantastic nursing staff at Medical City hospital!

I had surgery with Dr. Feigenbaum on September 23, 2015! A fall on the ice in February 2014 led me to his door. Unrelenting pain, loss of sensation, and loss of function were my norm and I was quickly progressing downhill. The surgery went well. The recovery was long so it essential to be patient and positive which is, at times, difficult. The office was always responsive to my calls even when I called three years later because I fell down the stairs and had pain once again. They advised me to contact my doctor for a steroid pack and MRI if the pain did not subside. I’m grateful to have the ability to call although I never hope to again! I am doing well and have my life back. I can do most things that I want. I probably do some things I shouldn’t. I seriously think of Dr. Feigenbaum daily even after 5+ years. And every day I thank God for his skilled hands and his dedication to helping the TC community. My husband made this cake for my 5th Surgerversary! It’s a special day around here!

For over a year, pain ruled my life. After being bedridden for 7 months while working with local doctors for help, I went to Cleveland Clinic. I was given the same answer–“We have no idea where your pain is coming from.” I ordered a copy of my MRI report and on it, for the first time, Tarlov Cysts were mentioned and the phrase “correlate clinically”. When I asked this doctor if the Tarlov Cysts could be my problem, he said “who knows”. Great help. I brought this info to local doctors and was told everyone has Tarlov Cysts and to ignore them. The pain was too great to ignore and after a long time of researching, I found Dr. Frank Feigenbaum. The process was long as Dr. Feigenbaum seems to be one of very few doctors that understands that in rare instances, these cysts can impact a patient with debilitating pain. Dr. Feigenbaum ordered a nerve block for these cysts and for two glorious days, my pain was gone…then it came back as the block wore off. This proved where my pain was coming from. Within months I was in Dr. Feigenbaum’s office, scheduled the surgery and began a better life. The 3 cysts were treated, my pain went away and I was no longer ruled by pain. I’ve never taken to my bed again. If I’d never found Dr. Feigenbaum, I believe I would still be living a nightmare of pain. Best Dr. EVER.

UPDATE: I am now 28 months post-op and continue to improve in leaps and bounds! Just this month I am able to run and jump on a trampoline!!!! I never thought I would be able to do those things again! I was completely bedridden for almost 2 years before and after surgery. Every movement is an absolute miracle! If you are suffering, please know that it will one day come to an end. If you are reading this, it just may be the beginning of the end for you. Just hang in there. Trust in your body. Trust in Dr. Feigenbaum. Trust. The journey you are on right now will one day be the most important journey of your life. I can’t wait to see you here on the other side…

I did my surgery on 2015. I was suffering from many symptoms from my tarlov cysts that made my life difficult and made me depressed. Many surgeons world wide told me that tarlov cysts won’t show any symptoms and that my symptoms were not related to tarlov. After searching in the internet I found Dr. Feigenbaum and I contacted Debbie his assistant and we made a Skype call. They were so honest and clear. Then we arranged for the surgery. I traveled to Cyprus with so many symptoms and pain and returned back home with no pain or symptoms all all. My tarlov cyst surgery was the best decision I have ever made but what’s important is finding the right and the one surgeon where you can close your eyes, trust, and let him work with no regret at all. If anyone suffered from tarlov cyst don’t quit and don’t harm your body with all the medications. Seek help and contact Dr Frank for a surgery opinion. With much love and appreciation.

I had surgery by Dr F Feigenbaum, to treat Tarlov Cyst in Nov 2013, at AIMIS-Cyprus hospital. I and my husband were very happy with the care I received. Regarding the recovery, we think that good recovery was already after the first year, while the maximal recovery was after the second year. I feel good and happy to tell I have had two babies since the surgery. During the period of 2-3 month after the birth, the old pain symptoms appeared randomly, for several hours. I can say that now, almost 1 year after last birth, I feel well, without any pain symptoms. Meanwhile, our family got grown and are very thankful for that! Due to the last experience of giving birth, I got to decision to become a nurse midwife. Thank you for reading!

I began to experience back pain towards the end of 2018. I had always had some discomfort due to some herniated disks in the lumbar area, but this pain felt different. I had pain while sitting, and the pain radiated down the left side from the buttocks, down the thigh, behind the knee, to the top of the ankle, and underneath the foot. I decided to have an MRI, and the report mentioned the herniated disks as the source of the pain. A Tarlov cyst at S2 was only mentioned in passing. I then began to research Tarlov cyst, and found Dr. Feigenbaum’s website. After reading up on the condition, I realized that I had all the symptoms. I then booked an appointment with a well regarded neurosurgeon in my town. The surgeon reviewed the MRI and stated that Tarlov cyst never causes any problems, and that nobody would operate, as this directly involves spinal nerves. I asked her if she had ever heard of Dr. F. in Dallas, she said she had not. I wanted to know if there was any treatment she knew of that would help, and she said I would have to learn to live with the condition, and that she could send me to a pain management doctor. The pain management doctor had not heard of Tarlov cyst, and wanted to do a nerve block. I did not like the idea of someone putting a needle anywhere near the cyst, so I decided against this treatment. I brought my films to a neuro radiologist for a second opinion, and she echoed the feelings of the neurosurgeon, that the cyst was definitely not the cause of my problems. I contacted Dr. Feigenbaum and he reviewed my MR scans. He saw 2 Tarlov cysts at S2, and saw the the cysts were compressing spinal nerves, and had eroded the sacrum. Dr. F felt that I would be a good candidate for surgery, and I booked the surgery for July 17, 2019. I flew down to Dallas from Connecticut and had the surgery at Dallas Medical City. The hospital was really great and everyone was super friendly and helpful. After the surgery, I felt well. The neuro floor where I stayed for 2 and a half days was incredible. The staff was very attentive, and a comprehensive pain management program was in place from the moment I woke from surgery. I felt no pain or discomfort. The food at the hospital was quite good! All of the symptoms I had been having were gone. Dr. Feigenbaum visited me and told me that he had found 3 Tarlov cysts and that 2 were stuck together. The cysts had compressed nerves at S1-S3, and had eroded the sacrum right through the bone! Glad I went to see him when I did. During surgery he placed a resorbable plate and screws over the area of eroded bone, these will dissolve into water within 2 years, and leave a tough scar. I was then discharged to the hotel for a week and saw his nurse Alicia before flying home. I did a lot of research, and would not let anyone else do this delicate and difficult surgery on me. By the time I had seen Dr. F., he had done in excess of 2000 surgeries for Tarlov cyst. I am forever grateful to Dr. Feigenbaum for his high level of surgical skill and excellent results in treating this dreadful disease.

I began experiencing pain in my buttocks in 2015-2016 especially after working in the yard, bending over a lot. Sitting for a long time, driving, lying in certain positions and eventually standing and walking was painful. I finally went to an orthopedic doctor in the fall of 2016 and after getting an MRI the doctor referred me to their physiatrist to have epidural injections. I had two rounds and they didn’t help. I had noticed on the MRI report (always get a copy of your test results) that I had a Tarlov Cyst but the three orthopedic doctors I saw didn’t feel it was causing my pain. I started researching Tarlov Cysts and knew that was the cause of my pain. I immediately found Dr. Feigenbaum’s website. After reading his bio, testimonials and how they can easily accommodate out of town patients I felt confident in contacting their office. The staff is caring and compassionate. Dr. Feigenbaum’s special expertise in removing Tarlov cysts is phenomenal. He truly cares about helping patients get their lives back with relief from the pain. I had surgery to remove 6 Tarlov cysts in May of 2017. I am so glad I did. It took a while for the nerve pain to subside as a result of the surgery, which is normal. I don’t have the pain I was experiencing prior to surgery. Sitting for a long time can still cause discomfort but I’m not complaining. After surgery I sent all three orthopedic doctors a letter about my experience along with my surgical report. One of them called me to ask more about the surgery and at the end of the conversation said he was sorry. Doctors need to be educated about Tarlov Cysts! Don’t let them tell you it’s in your head or you’ll have to live with it on pain medicine. Please make an appointment with Dr. Feigenbaum. He is a blessing. Thank you Dr. Feigenbaum.

I suffered for many years with the pain becoming worse every day. I could not sit or stand comfortably for any length of time. Many doctors gave different diagnosis. None of them were accurate. Finally after 2 MRI scans, I noticed a tarlov cyst noted on the 2nd report. I researched them myself and saw a local neurosurgeon that told me it was impossible for it to cause symptoms. It was then that I made an appointment with Dr. F. Turns out that I had 5 cysts in the sacrum. By then it was difficult to walk at all. I noticed immediately after surgery the pain in my feet was gone. 2 years later and my pain level is down to about a 2 and some days not much pain at all. I have started working out again. I can walk and sit. I am getting my life back thanks to Dr. F and his wonderful staff. People thought I was just a complainer; now they know that I was really in pain. Thank you Dr. Feigenbaum!!!!

This is an update to my previous post (the one with the skydiving picture): About a year ago (7 years post-op), I started running for the first time in 23 years. Since then, I have completed several 5Ks, a 10K, and just finished my first ever half marathon. This would not have been possible without Dr. Feigenbaum’s skill and expertise. I am forever grateful!

In June 2017 I had a Tarlov Cyst located in the sacral area of my spine. I was impaired to walk freely for two years prior to Surgery. My doctors in Kansas referred me to Dr. Frank Feigenbaum. I was so fortunate to have this wonderful and competent doctor to treat my Cyst from such a risky place in my body. It is now 10 month after surgery. I never felt better like I feel now. I walk freely without pain, I work in my garden planting flowers and veggies for my enjoyment…I want to thank Dr. Feigenbaum and his medical and administrative staff for caring for me with so much compassion and loving care. God Bless all of you at the Tarlov Cyst Institute that have been achieving miracles to save people from invalidity. Thank you. Maria M.

If you are reading this, you or someone you love has been diagnosed with Tarlov or Meningeal Cysts, and are doing research to find someone to help. Well, you have found that someone. Dr. Feigenbaum is kind and understanding about what you are going through. He and his staff explain everything on your level so that you understand everything that is going to happen even before you ask one question. I am a month and a half post-op. I had no life at all pre surgery. The pain kept me on the couch or in the bed 22 hours daily. My best friend was the heating pad. When I finally received the correct diagnosis, I sent my MRI and report to Shands, Mayo Clinic, and all the top notch Neurosurgeons in town or surrounding areas. No one would or could help me. They do not have the experience or know how to treat this rare disease. Some of them haven’t even heard of this disease. Now that’s a little frightening. So I did my research like you are and found Dr. Feigenbaum. Twenty two years experience and has perfected a procedure to get rid of these cysts. That spoke volumes to me. A couple of days after surgery they had me walking the halls of the hospital. I hadn’t walked that far in years. Now I can walk a little every day and sit longer than I could before. Dr. Feigenbaum told me that it wouldn’t take overnight for you to get this way and it’s going to take time to heal. Dr. Feigenbaum is an angel in disguise. A brilliant surgeon! His staff is just as wonderful as he is. I would recommend him to anyone. And no, I am not being payed to write this testimonial, this is how I truly feel. Still miss my heating pad.

2 years post surgery performed in Cyprus January 2015

Pre-surgery from Dr. Feigenbaum, I was in such distress with pain and lifestyle inconvenience; I was distraught with how to deal with this until speaking with Dr Feigenbaum and Debbie which gave me hope.

I can say improvement has been gradual but always progressive to date.

As of right now, I can drive my car for up to 2 hours with not much more effect than general stiffness. Before surgery I refused to sit at all. Now my perineum pain is gone and waterworks I think is normal for a man of my age. Previously anything from 6 to 10 trips to the loo through the night. Now only once.

I am so grateful for the skill and knowledge of Dr. Feigenbaum to be able to give me a quality of life which has to be appreciated when it seemed the rest of the medical profession were in denial with this condition.

My sincere thanks to Dr. Feigenbaum and to Debbie.

Eight weeks ago I had surgery on the anterior bilateral S1 nerves and it was a complete success! I have absolutely no pain from these cysts, unless I overdo it. I’m very grateful! I still have other cysts that need to be worked on both in my sacrum and upper back.

I had 9 Tarlov cysts treated in September of 2016. I still have more intrasacral, but I feel so BLESSED. I can now sit in an office chair for more than 15 minutes without complete agony. I stand without pain, I no longer limp. My pain and numbness are dissipating. I noticed the most significant difference in healing between month 5 and 6. I finally ran for the first time, just to test myself. I know my body is still healing, but It has definitely gotten better. I am so glad I chose to go through with it, and If the intrasacral sacs become an issue, then I won’t hesitate to have them treated as well. The nurses and staff at Pine Creek Medical Center were beyond wonderful and I express the most gratitude for them.

I would say my pain started somewhere around 2007. I got to a point where I was in pain every single day, without fail. My lumbar area, buttocks, & even down the side of my thigh to right behind the knee was even sore to the touch. It felt constantly bruised. After countless doctorsâ visits, with many different kinds of doctors I got the diagnosis of Fibromyalgia. I did have an MRI in 2010, & the orthopedic doctor referred me to a Neurosurgeon who said that the cyst was fine. It could stay right there forever, no big deal, lots of people live with them. Okay so I did. I was. Fast forward, June 2016, I stepped out of the passenger side of my truck to enter a place of business when I was struck on my left side by a truck that came airborne off the nearby elevated highway. After that I couldn’t sit, stand, walk, sleep, etc. without pain. I began to avoid stairs & walking long distances. I began to miss my kids ball games, & miss work because the pain was so intense. I did 12 weeks of physical therapy only to be told I was going backwards in their recovery process. After the PT & ordering doctor discussed this they decided we would order an MRI with contrast. (We did a MRI & X-rays immediately after the car accident & their initial diagnosis was deep tissue bruising, just banged up). This MRI report said there was a very prominent Tarlov cyst present in my sacral area. Now that the cyst had a name I began to do my own research. That’s where I found Dr. F & his website / studies had so much information!! I also found out that if these cyst suffer trauma they could grow in size. Mine had done exactly that! Unfortunately I don’t have a screenshot or picture of my cyst in 2010, but it was only slightly larger than the one on the left from what I remember. Maybe the size of a half dollar. The picture on the right was mine after the accident, & what Dr. F removed. He & his staff did a wonderful job!! Though I’m still waiting on the nerves to completely settle down I have faith they will!! I am 7 weeks post op & already I can tell a huge difference!! I have high hopes for my recovery & will be forever grateful to Dr. Frank Feigenbaum & his amazing staff!!

“…I don’t regret my surgery for one moment. I have greatly improved since having it and would have done the same thing all over again. Dr. Feigenbaum and his team are miracle workers.

My wife and daughters and I would all like to thank Dr. Feigenbaum and the entire team for all your help and support in pursuing my appeal.

I am 4 years post surgical today. I want to tell all patients that even though the monitoring ends at 2 years, you are not done healing.
Keep the faith and the future can keep improving.

At an active 59 years old (ballet classes and all), I developed the nightmare of a symptomatic Tarlov Cyst. By the time I had the surgery, I had experienced a misguided decision to have a procedure at Hopkins that was totally messed up (by a nurse who sat me upright after the spinal procedure, despite my pleas)….till a phone call came…too late!

I was in agony and bed ridden about 85% of each day and could no longer put one foot in front of the other. Then I had the surgery with Dr. Feigenbaum and his team. Miracle when they first got me up….the next day!….and I could put one foot in front of the other. I cried for joy and grinned like a Cheshire Cat as I wobbled down the hall.

Yet because of my Hopkins experience and slow diagnosis due to the rarity of knowledge about the condition, I sustained lots of nerve damage.
I continued on Tramadol (NSAIDS no longer an option because I developed an ulcer, hiatal hernia, etc. from trying to avoid prescription medications) and went off after about 2 years to Duloxetine (40 mg), which I have just stopped after about 2 years (warning-not easy to stop, so research before beginning!). But it did help me while I was on it and I only supplemented with Acetaminophen…fast relief was especially effective.

Never thought I would travel, as I had dreamed about doing after retiring, but I have! In Italy, 3 years after my surgery, I left my cane in the AirBNB and climbed every step in the Tower of Pisa and Brunelleschi’s Dome. I still have difficulty sitting but have been able to walk more and more…..couldn’t do a quarter mile at first. The crowning gift of healing from Dr Feigenbaum’s skill was a bucket list trip to New Zealand and Australia. Yes the plane ride had me circling the seats, but I made it! To top it off, I hiked up my first mountain since before my Tarlov nightmare – Mt Wellington, NZ. I cried tears of joy and took the above photo to send to Dr Feigenbaum. Not a day goes by that my thoughts and heart does not thank him and his staff. Not only were they skilled and wonderful pre, during and post surgery, but you remain their patient forever, and they have helped and reassured me numerous times. I often beg to be charged! I will never be able to thank Dr. Feigenbaum enough. He gave me my life back with my family, and a life that that is full of wonder and possibility.

I now walk from one end of Manhattan to another and as often as I can, I avoid public transportation. I relish my gift and give thanks for each beautiful step and adventure made possible by the amazing skill and dedication of Dr. Feigenbaum and his staff.

Heartfelt and forever thanks!

I am a 57 year old female and I can remember having cyst symptoms as early as 10 years old. I’ve had tingling, burning and numbness in my buttocks and thighs along with neuropathy type symptoms in my feet for years. After an MRI when I was in my 30’s, I was told these symptoms were due to a bulging disc. After my 5th child, I was no longer able to lie on my back due to the burning and I was unable to walk barefoot for the same reason. I was just putting up with all of this because I thought I had no choice. It wasn’t horrible, just annoying. Then in June of 2005, I woke up one morning and was unable to walk without pain in my back. As the day progressed, so did the pain. My chiropractor scheduled another MRI and found nothing other than some tarlov cysts that were, he felt, not causing the problem. He referred me to an orthopedic. This doctor felt that the cysts were causing the pain and referred me to a neurosurgeon. What followed was months of testing and misdiagnosis. I had scans and biopsies. I was even told that the pain was due to tumors that were inside of the cysts, that they were inoperable and that I would have to live with the pain. This was the opinion of the entire neurosurgeon board of Ochsner Hospital in New Orleans. By this time, the flare up had calmed down some, but the daily pain was steadily climbing. After two years, I started with a pain mgmt doctor. They referred me to the top neurosurgeon at LSU Medical Center, also in New Orleans. Again, I was subjected to a series of tests, with the result being that I was told the same thing that Ochsner had told me. Inoperable and I would have to live with the pain. After another two years, the pain was getting steadily worse. By this time, I was on the highest dose of Lyrica and Ultram ER, along with Vicodin for breakthrough pain.

I was also on a double dose of Vesicare everyday because the bladder frequency was horrible. Somedays I felt chained to the toilet. I couldn’t sleep anymore because of feeling like I always had to urinate. I also was having to do enemas frequently because sometimes my colon would just decide it didn’t want to work. The pain was taking over my life, and the all the pain meds I was taking was making me a useless vegetable living on the couch. Again, I thought I had no choice but to live with it, the only problem was that I was no longer living. I have 5 children. My youngest, at this time, was 12, and I was at the point where I could no longer care for any of them. One day I stumbled across a forum on the National Organization of Rare Diseases and there were some posts on there that were talking about a Dr. Feigenbaum that was not only willing to do the surgery but that he was getting great results. I immediately found out who he was and called the office. Thank God for the internet! His staff was very helpful and for the first time in over 4 years I had hope. They told me to mail my info to him and that he would get back with me. They also told me about the TC Foundation website and some TC Forums. When Dr. F called me, he asked questions that showed he totally understood what I was experiencing and he told me he thought he could help me. At this time, I think he had done only about 80 of these surgeries. I was scared to death, but as I continued to pray about it and talk it over with my family, we all felt I should do it. I had to do something! So, in August of 2009, I had the surgery. Dr. F was and is amazing. The entire staff was so helpful and were there to encourage me and answer any and all questions. Dr. F told me that since I had been dealing with these cysts, most likely born with them, for so long, I would probably have some permanent damage, but that he could stop the progression of the disease and that I would see improvement as time went on. That is exactly what happened. After the surgery, there was a significant improvement in all of my symptoms. the first 2 years were tough, I had good days and bad days, but still saw steady improvement. Fast forward to now, 5 1/2 years post op. I still have some bladder frequency, but my gynecologist believes this is also due to the 5 pregnancies I had, even so, it is nothing like it was prior to surgery. I do still deal with daily burning, but it is controlled with Ultram at half the dose it was prior to surgery. I weaned myself off of the Lyrica and Vicoden after about 1 year post op. I still have to do an occasional enema because of the colon not wanting to work, but they are becoming less and less. Again, I am not totally symptom free, but I am no longer living on the couch stoned out of my mind. I am working in my house and yard, enjoying my husband, children, grandchildren and life! I know that this is a long testimony, but I wanted to give hope to someone that is dealing with this. I have had this all my life and no one didn’t get the proper diagnosis until I was in my 50’s. Recently, I was describing what I had gone through to someone I knew. As I was talking, I started to cry, I can’t believe how far I’ve come and how long I lived with the pain. I am so grateful to Dr. F and his team. They have devoted their lives to helping others live as pain free as they can. TC’s are a tough diagnosis but there is hope for TC patients if they can get in touch with the right doctors. Thank you Dr. Feigenbaum for being willing to tackle something that no other doctors wanted to touch. Thank you to your team. I know that because of what you do you spend alot of time away from your family, please thank them for me also! I can’t even imagine where I would be if I hadn’t heard about Dr. F.

Submitted March 2015

At the age of 14 I took a hard fall after tripping and my back pain began. My freshman year of high school I began having caudal epidurals. I saw countless doctors, specialists, and basically anyone in MO who thought they could help. I tried everything from physical therapy to radio frequency ablation in those 4 years of not knowing what was causing my severe pain. I never let this pain slow me down or stop me from anything and finished in the top of my class. By my senior year I was getting worse had given up on ever finding a true problem with my back. I lost all motion and feeling in my left leg, my bladder quit emptying and my right kidney function was low, which caused many other problems. Finally my chiropractor (who I had been seeing since this all started) recommended someone he had gone to medical school with, Dr. Feigenbaum. After one MRI he knew exactly what was causing my problem and we were soon scheduling surgery. At 18 this was nerve racking for me but I had so much hope this was going to be a pain free beginning for me, and for once I was right! I awoke from surgery pain free for the first time in 4 very long years. This surgery truly saved my way of life. I could not have finished my first year of college without the freedom I received from being free of pain. Dr. Feigenbaum and his entire staff, along with the staff at St. Luke’s hospital truly gave me a wonderful new life!

Submitted July 2014

I had been in pain management for almost ten years when I discovered that I had Tarlov Cysts. I had gone to many spine specialists who recommended injections, physical therapy, hydrotherapy, strength training, a TENS unit and even a back brace. Some questioned whether I was really in pain. Because the pain I was describing didn’t fit with where they said my pain SHOULD be, I was made to feel as if I was dreaming up symptoms. After finding out about the cysts, I asked my pain management/spine doctor if he had known about the cysts before. He told me that he did know about them, but since they were believed to be totally benign that he had chosen not to tell me about them.

I had quit going to family gatherings and spent much of my time in bed because that was the only place I could get at least a measure of relief.

A totally unrelated emergency situation caused me to be referred to a neurologist. After addressing the other problem, which was temporary, he did a total neurological workup in which he found that I had no reflexes in my legs. After viewing my latest MRI, he said that he had found the source of my sacral pain and likely the absence of reflexes. Then he showed me three large cysts. He recommended that I see a spine surgeon. I made an appointment with the spine surgeon who had been treating patients from my pain management clinic. He told me that Tarlov Cysts were benign anomalies of the spine and that they didn’t cause pain, but that if I wanted to pursue the matter further, there was a neurosurgeon in Dallas who had founded an institute dealing with Tarlov cysts. I called and made an appointment, and from that first appointment it was only about three months until my surgery.

I had bowel and bladder problems that I had endured for years without knowing they were directly connected to the location of the cysts on my spine. At one year out from my surgery, these have almost completely abated and the reflexes in my legs are now completely normal.

After the surgery, I had to find a new pain management clinic since my other pain doctor had moved out of the area. The new one stated that he was sure I had wasted my money on the surgery since Tarlov cysts don’t cause pain and implied that I was just seeking drugs. Although I now have to travel for over an hour to get to his office, I found a doctor who was familiar with Tarlov cysts, and who will work with me until I no longer need narcotic pain medication.

Although I am still in pain management, I am taking less than half the pain killers than I was before the surgery, and I am having more and more pain-free days. I am getting out more and have begun new projects that would have been impossible to complete before I had the surgery.

Dr. Feigenbaum and his staff have been extremely kind, considerate and professional, and the hospital experience was one of the best I have ever had.

I would recommend that if you are diagnosed with Tarlov cysts you should seek the services of Dr. Feigenbaum and his staff.

Submitted May 2014

I had intermittent lower back pain with sciatica symptoms for about 10 months. I had xrays and was put on a pain management programme with no real plan on how to correct my issue. I was told my L5/S1 disc had a slight bulge and under weight bearing activities, was pinching the nerve and thus giving me sciatica. On my 44th brthday in 2012, I drove on a 9 hour return trip to visit my son. The next day, I was in immense pain and couldnt walk. This was the start of 8 months of intense pain where I couldnt drive any distance in a car, couldnt walk far,sit or stand long. Sometimes, I couldnt feel my legs, couldnt extend my legs to drive the car and even laying in bed hurt. I got an MRI overseas that stated “insignificantly there is a tarlov cyst”. This saw me trawl the internet intensely and I found Aimis and Dr Feigenbaum. I was certain this cyst was the cause of my pain and after a phone call discussion with Dr Feigenbaum – he confirmed my suspicions and told me he could see 4 cysts on the MRI. The pain drove me mental. I took minimal pain meds as they made me sick. I cried all the time even though I am a happy person- but my body had had enough. I live in New Zealand and flew to the AIMIS facility in Cyprus for my surgery with Dr F on Feb 11, 2013. I had treatment for 4 large cysts and one small one at S1, S2 and S3. After the surgery, I have no pain. I have soreness in the sacrum area but nothing that requires pain meds. I am quite active again but mindful it is early days and need to limit my activity to ensure I heal properly from such an intense operation. I am so happy to have my life back.

Submitted March 2013 Update: 2 years post surgery I am still doing great.

I had Tarlov Cyst surgery last Nov 6th, 2012. As I pass this one year “anniversary”, I would like to share my experiences in hopes of helping others. By the time I had the surgery I had been through many doctors and tests, procedures and wrong diagnoses for my increasing and debilitating pain. When a radiology report revealed a Tarlov Cyst and suggested follow up, my husband googled it and though the symptoms fit like a glove, the pain management Dr( a spine specialist) refused to believe it. I have since found this ignorance common and frightening. I sent my info. to Hopkins and the diagnosis was confirmed. I had the fibrin glue treatment there in July 2012 and it actually increased my symptoms. I went downhill till my surgery with Dr Feigenbaum.

Immediately after the surgery, when first allowed up, I could finally put one foot in front of the other to walk. (I had been only hobbling side ways before.) I actually had tears of joy. However a long road still was ahead. Improvement for the severe nerve damage the cyst incurred is a painstakingly slow and uneven journey. However Dr Feigenbaum prepared me and gave me not only his amazing skill and compassion, but the gift of hope. He warned me about the upcoming months(3-6, although mine continued an extra month!), when I would be able to do more but it would hurt more…as advertised! By January 2013, I realized I could walk close to a half mile. Around month 8, the pain began to ebb more and I started to realize how much more I could do. The “sharp rocks” feeling when I sat, the constant stinging and pain in the thighs, hips and private areas faded. Pain began to centralize at the sacral site. Progress was still uneven, but very noticeable. At 12 months, while still hoping for further progress, I can walk about a mile at one time and sit for longer periods. I am down to 1-2 50 mg Tramadol a day for pain, with a very occasional Tylenol thrown in. I also have been using acupuncture with a trained medical doctor which has provided temporary respites from the pain.

I wish I could spread the word to every Tarlov sufferer about Dr Feigenbaum and his wonderful, compassionate and always helpful staff. Help is there. I thank him in my heart and mind every single day and with each step I take.

I just wanted to say a HUGE THANK YOU to Dr. Feigenbaum for giving my life back. I had surgery 13 days ago in Cyprus and all my pains that i had have gone. I couldn’t walk anymore before my operation and i now can. Dr.Feigenbaum changed my life and i can’t really thank him enough!

Submitted December 2013

Update at one year – still doing great!

Shortly after childbirth in 2004, I began to experience neuropathy in my toes. It was numbness and neuropathic itch which made diagnosis very difficult: my earliest treatment was with a podiatrist who was medicating me for toe fungus.

Fast forward to 2009, I had sensory and motor neurologic symptoms in my lower extremities, pudendal neuropathy, bladder dysfunction, and vertigo. I could barely walk or function in my obligations. I did improve with physical therapy and was able to function in a state of intractable discomfort and highly medicated.

An MRN in 2010 showed tarlov cysts in my sacrum, but a chorus of physicians told me to ignore them. The first “Tarlov cyst doctor” I sent my films to, seemed to discount the cysts because he did not believe they were large enough; but he did suggest that he could do a spinal tap to relieve CSF pressure, and if this helped he could treat me by implanting a shunt. This sounded barbaric to me. My insurance company wanted me to have the cysts fibrin glued, a practice that has been almost universally abandoned due to poor long term outcome.

Dr. Feigenbaum was the only physician in the field whose approach made total sense. He went over my images with me, and I was apalled at what I had been told by other physicians because a monkey could see that I had severe nerve root compression. Due wasted time with other physicians and an epic battle with my insurance company, two years elapsed between the time the tarlov cysts were identified and the time when I actually had surgery with Dr. Feigenbaum. In the interim, my legs had become so weak that I frequently injured myself walking; and I had become obese due to inability to excercise. I was on 4 medications with side effects that made me miserable. I was progressively developing more sensory neuropathies: numbness in the feet and legs, burning pain on the bottoms of my feet, intermittant sciatica, and difficulty with more branches of the pudendal nerve. I was surviving until surgery, not living.

I would like to emphasize that my results are probably not typical, but I felt dramatically better after surgery and was walking laps around the hospital the minute my 24 hours of lying flat were over. Pain at the surgical site was minimal. It was just sore, so I never refilled my narcotic and just used naproxen for pain. I had more sensation and strength in my legs immediately post-op. I have not had pain in my feet or legs since surgery; only continued mild neuropathic itch in my toes. My pelvic area was numb immediately post-op which was wonderful for me with my history of pudendal neuropathy, but did make bladder and bowel function more of a challenge for a couple of months until sensation returned to the area.

Immediately post-op I thought I was in heaven. I left the hospital after 3 days, stopped at Walgreens to fill my prescriptions, and was out grocery shopping the next day with my friend. After my post-op visit a week later, I flew home, and immediately resumed household duties. I am almost 9 months out and steadily improving. I had some struggles early on, with my bladder especially and also I “overdid it” to a crazy extent in my 4th month and had a flare of pudendal neuropathy for most of the 5th month as a result. On the up side: I am down from 4 meds to 2 meds, in lower doses. I walk 2 miles daily and am taking off weight. My legs feel perfect and my feet improved. My pudendal symptoms are fading into the background as they gradually improve (not the heaven of the initial numbness, but definitely doing well!) Only my bladder remains at pre-op level but I am very confident to have improved so much by 9 months since I am aware many patients take 2 or even 3 years to experience optimal results.

I just got a job, and feel like I am getting my life back. After experiencing slow but steady deterioration, I am experiencing improvement at a relatively rapid rate, although day-to-day I certainly do need to have patience.

Dr. Feigenbaum is the only doctor working in this field I would have allowed to touch me. I hope he is able to teach his techniques to other talented Neurosurgeons in the future, because I think he has devised the best treatment presently available for Tarlov cyst disease. After a lot of research and self advocacy I was able to find the ONE practitioner able to save me and my family from this nightmare. I urge anyone who suspects tarlov cysts might be playing a role in their pathology, to bring or send their MRI to Dr. Feigenbaum, and find out if you are a candidate for tarlov cyst surgery. His MRI evaluations and patient exams make sense: They are not based on the almost universal bias physicians seem to have against appropriate diagnosis and treatment of Tarlov cyst disease.

I know many patients struggle more post-op than I did; each individual reacts differently to having the nerve roots directly handled and manipulated. But in the long term, if tarlov cysts are compressing your nerve roots then in my opinion Dr. Feigenbaum’s treatment is your best chance at a normal life.

I have had back pain most of my life, I had 5 children and thought that they were the cause of it, one day I was shopping and I bent over and had the most excruciating pain in my low back you could imagine, I could hardly make it to my truck to drive home, I felt as if I would pass out from the pain. It took my PC doctor several MRI’s, other doctors, including physical therapy, chiropractic treatment, nothing was giving me relief… I asked my Dr. for a copy of my MRI to take to the Chiropractor, when I read it and saw multiple Tarlov Cysts at S1 and S2, I almost had a heart attack, I had no clue and neither did my doctor what they were. I did research on the internet and found a support forum that educated me on this disease. I had to educate my primary care doctor…I ended up going to Portland, Or. from Calif. to have Fibrin Glue Injection done, which did nothing for my pain. Then I found Dr. Henderson in Wash. DC I contacted him and he did my first surgery. I was still in a lot of pain. 2 years later I found Dr. Feigenbaum, I contacted him and when he called me and said yes he could help me…I made arrangements right away to have a second surgery. I had my surgery at HSSH the staff at that hosp. was awesome..Dr. F. and Debbie West are the best…I have never in all my surgeries (and I’ve had quite a few) had such personal and compassionate treatment as I did from them. Am I cured? no I still have cysts growing on my spine and I am hoping one day they will find a cure for us. I pray that Dr.F. will continue helping people like us with this disease..because it is so very painful, unless you have it, you can’t imagine the pain. Bless this Dr. and his staff…I Love them all.. If I have to have Tarlov or Meningeal cyst surgery again, I would hope that I can get to Dr.F. to perform it.

Short Testimonial

Dr. Feigenbaum operated on two symptomatic sacral Tarlov Cysts in January 2008.

From the first phone call to his practice through all stages of my recovery I was treated with compassion, professionalism and care. Dr. Feigenbaum is an extremely gifted surgeon who shows passion in everything he does. His surgical assistant Debbie West and his entire staff have something in common â human compassion and complete commitment to their patients. Thank you Dr. Feigenbaum and Debbie West for giving me my life back!

My Story

I was 41 with 3 school aged children. I had been regularly going to the gym for the past seven years and really felt like I was in the prime of my life. In 11/07 I experienced a lightening like shock go down my left leg. This set in motion a long series of MRIâs, X-rays and other studies with at least a dozen doctors include several neurologists, my OBGYN, urologists, a neurosurgeon and orthopedic surgeon. On the very first MRI it was noted that I had an incidental bilateral sacral Tarlov Cysts. I was told by almost all of the Dr.âs that it could not be the problem because 99.5% of the time they are not symptomatic. My physical state of being continued to deteriorate rapidly and within one month I was having leg pain, a spastic bladder, extreme pressure in my abdomen and could not sit or stand for more than 10 minutes. We had ruled everything out yet still no one could give me an answer for what was causing the symptoms. By this time I was house and bed bound for most of the day.

I found the Tarlov Cyst Foundation. As I continued to read about Tarlov Cysts the excitement turned to fear because what I was reading was that there was no proven treatment for Tarlov Cysts. I went to list of Surgeons and upon doing other research decided to call Dr. Feigenbaum. I called and left a message for his Assistant, Debbie West. She promptly returned my call that day and spent close to an hour on the phone with me, I had finally found a medical professional who understood what I was saying and âspoke my languageâ. An immediate feeling of peace set in and I knew I was headed in the right direction.

I sent my films and some additional X-Rays as requested by Dr. Feigenbaum. I received a phone call late in the evening and he confirmed that I was a candidate for surgery and he explained in detail what the surgery entailed. He answered all of my questions in detail. I hung up the phone and thought to myself âthis IS the man who will perfect the surgery for Tarlov Cystsâ.

After many days of discussion with my family and talking on the phone with several of his other patients who had the surgery for Tarlov Cysts the decision was made and my surgery was scheduled.

I am now post-op over sixteen months. Although my recovery was long, it was not too long before I was back to being a full time mom to three very active girls. My life has been restored and I owe it to Dr. Feigenbaum and his wonderful staff. I will always be grateful for the care and compassion I was given at a time when I was in extreme physical pain and desperation. Thank you Debbie and Dr. Feigenbaum for your commitment to Tarlov Cyst Disease, you are exceptional medical professionals and very special human beings!

I contacted Midwest Neurosurgery in October 2009 (spoke with Debbie West, RNFA) as I had two Tarlov cysts that were ruining my life. I explained to Debbie how six months prior, I had the fibrin glue injection at Johns Hopkins in Baltimore, which had failed. I mailed off a packet of my info to her.

Several weeks later I spoke with Dr. Frank Feigenbaum and after answering a number of questions; I expressed my fear but asked if he could help me. He said yes and I said ok.

I met with Dr. Feigenbaum and Debbie the day before surgery. I was really nervous but I want the truth and they explained what the procedure entailed. They both showed compassion and I believe they really understood the physical pain that I was going through.

My nervousness the day of surgery was compounded by a 3 hour delay due to complications from a previous surgery. Debbie and Dr. Feigenbaum arrive at my waiting point to say they are now ready for me. I know it had been an already long day and I asked them both if they needed to sleep. They laughed and said no and that we need to get started. Fortunately, I had no fibrin glue residue left in the cyst which cut down on excessive tedious work. I later thanked them both for staying late to help me even though they did not have to.

I stayed in the hospital 4 days… both the night and day nurses (DD and Tina) were very good and understood how to take care of me. That first night was very difficult but fortunately by the 3rd day I was walking around the hallways.

I met Debbie and Dr. Feigenbaum later the following week and they were pleased with my progress. Debbie had given some parting advice on how to live for the next 6 weeks – which are critical to healing properly. As it turns my stay in Kansas was cut short due to a massive blizzard that was approaching Maryland. The state received 50 inches in a week due to several storms.

Over time (the last 9 months), I have emailed Debbie many times with questions and concerns. She always responds with advice or recommendations. I do my best to listen and I appreciate her time as I do know how busy she is. I have had several MRIs over these months and Dr. Feigenbaum has called to discuss the results and I appreciate that also.

Finally, the best news out of all this is that I have my life back. I am not 100% and may never be. Time will tell. What I can say is that I am 100% better and can do most things but I miss skipping rope.

The difference between pre-op and post-op Tarlov symptoms is the difference between night and day. Through the years , after many consultations with different Dr’s , phys. therapy, drugs, chiropractors, no one could tell me what was wrong with my back. Out of desperation and the help of my daughter, I turned to the Internet, plugged in my symptoms on webmd.com and came up with Tarlov cyst disease and the foundation. Through researching the disease, I found Dr. Feigenbaum’s address at Midwest Neurosurgery Associates.

I sent in my Lumbar MRI as well as a number of tests my primary Dr. had performed in June, 2009. When I received Dr F’s call , he requested a MRI of the sacrum and flex/ extension x-ray of L4 and L5. I received another call from him in October and was told I definitely had 2 problems areas in my back. To either rule out one or the other, I had to have a nerve root block on L4 and L5. When that was done , since I still had pain and numbness, Dr. F told my husband and I that I did indeed have 3 cysts in the sacrum and spondylolesthesis of L4 and L5. Both surgeries were scheduled for Jan 28, 2010.

I am now 1 year post-op. I no longer need a pillow to sit on and yes I can comfortably set on a wood chair!!

Before surgery, standing wasn’t possible, now I can stand a good hour before I need to change positions. Walking now is a simple procedure, no more holding my breath when I take a step.

No one realizes the pressure and pain that these cysts cause until they are fixed. They grow slowly and you are ecstatic when they have eroded enough bone to comfortably fit in an area. At that time, you have a reprieve of pain.

The thought of surgery was scary but the knowledge that the cysts would continue to grow and damage the nerves overrode that thought.

Dr. Feigenbaum, Debbie and his staff are the best. You won’t find a more passionate, highly skilled doctor as Dr F. They are dedicated to helping Tarlov patients. My hope and prayer is that soon this disease will be recognized for what it is- a debilitating disease if left unchecked.

If you are contemplating surgery, don’t hesitate. These cysts will not go away on their own. It is up to you to ask questions and to have the strength, courage and determination to get the answers you need to have a full, productive life.

Wishing you better and brighter days ahead.

I am a very athletic 48yr old woman who experienced over a year of what I and other doctors thought initially was a piriformis strain, then facet problems. I failed changing up my exercise routine, Physical Therapy, Myofascial Therapy, Acupuncture etc…I am a Nurse Practitioner of many years and demanded a MRI of the lumbar sacral area as my health was declining. The radiologist read the MRI as facet syndrome with multiple Tarlov Cysts as insignificant. I got a copy of the films and was amazed by the size of the cysts so I asked for a measurement of the cysts so I could start the consultation process. I was dismissed by the radiologist who stated “that is not where your pain is coming from” but agreed to measure them as I asked him if he had examined me and if he was my doctor.

Many doctors, even those in the medical field of 30 plus years had never even heard of these cysts. I found the Tarlov Foundation website, read the symptoms and that was my case. I had almost every symptom that is listed on the Tarlov website. I then went to the Spine Center and was barely examined and whisked into a room for a facet injection which made my symptoms worse. I could not work for 2 days. It was then I contacted Reta Heirs from the Tarlov Foundation and was sent info on Tarlov Cysts and the doctors who treated them. I consulted with Neurosurgeons in New Mexico who said they would never treat them. Once again, the longer I waited the more the pain intensified, I was working part-time, treated patients standing up, limping, and would immediately lay down on my side when I got home. I could no longer walk my dog, go to movies, go out to eat, and had to start meds with many side effects. I consulted with 2 other Neurosurgeons in the U.S. and finally found Dr. Feigenbaum who read my cd and did 2 phone consults. I had to go through another nerve block which lead to even more pain, get prior authorization for the surgery and was denied and told it was experimental by my insurance company. I am lucky to have a medical background so I persevered which was very stressful when in pain but got it approved.

I am 1yr. post-op and 75% better, I can walk and my sciatic pain only flares if I overdo it. The recovery process is slow and I am unable to work currently but plan on going back in the spring part-time. I am weaning down on meds, receiving massage and working on stretching gently. I have some post laminectomy pain that comes and goes which is the biggest reason I’m not working. Even though the recovery was extremely difficult and painful physically and emotionally I DO NOT REGRET HAVING THE SURGERY. I am glad I was diagnosed relatively quickly, as others have taken years and are much worse off from nerve damage and I feel for them. I am glad Debbie and Dr. Feigenbaum are on the cutting edge of this type of surgery or I believe I would be permanently disabled down the road if not for the surgery and knowlege of these people. I am grateful and take it one day at a time.

I am a very active female, 48 years old, a registered nurse from Wyoming that works part time in a fast paced surgical center and does parttime ultrasounds for a pregnancy resource center. Riding horses is my passion and I was bucked off a mustang in 2008 and broke my left clavicle. I healed quickly from that, but continued to have some pain in my left shoulder and back area, very achy and chronic. Also have been having urinary issues that no one can find the root cause to~ had vag hysterectomy and cystocele, rectocele repair and gall bladder removed in between these years. In the fall of 2009 I was bucked off again on my back and continued to have neck and back pain. In January 2010 went in for cervical MRI and found that I had a couple of perineural cysts on my spine. After major research on my own, I went in for a nerve block on the biggest symptomatic cyst in T-1 T-2 per Dr Feigenbaum’s advice. The block really helped! The radioloigist that did the block wanted to aspirate the cyst, but I knew from previous research that was not a good idea.The cyst would just refill with spinal fluid and grow bigger!

I went in for surgery on November 2, 2010 and Dr Feigenbaum actually found 2 cysts together in T-1 and T-2 and and that they were pressing on nerves, he banded one and fixed the other one and spent a week and a half in Kansas City, Mo. Spent one night in Research Medical Center which was very nice and all the people who cared for me were outstanding. Not knowing anyone in KC and being in the medical profession, I felt like I was in very good hands. I was really scared up until the moment they took me back to surgery knowing that my pain could possibly be worse or better. Knowing that I love my active lifestyle and want to maintain it and live a long healthy life, I opted to take the chance with the surgery.

I did have quite a bit of pain after surgery in my neck and back, but walked around the mall on my 3rd day post op and continued walking every day. My left lower arm on the backside is numb and hopefully that will come back as my nerves heal and growth is slow. A hard thing with my surgery was is that I cannot take narcotics for pain because of nausea and vomiting, so basically I was on Tylenol and Toradol in the hospital and Tylenol and Ibuprofen after discharge. My pain was bearable and livable. My recovery was a little rough, but thankful it was over and the healing was beginning. I experienced severe nerve pain in my neck and upper back the 3rd week post op and required being on some amitryptyline. I went back to work my 4th week post-op and continued walking up to 4 1/2 miles a day. Since then I have been increasing my activity to lifting weights, cycling class at the YMCA, cross country skiing and pickle ball strengthening the muscles around my surgical site. Having little or no pain in that back or neck area at this time to just an occassional twinge of nerve pain in my neck. I am very pleased with the results of this surgery! Thank you for all your good care!

I KNEW I was in the best hands possible.

I can not begin to express the devastation of my life when I had an untreated Tarlov cyst. From nowhere, I began to suffer excruciating low back pain, with pain and numbness traveling down the back of my right leg and into my right foot. The cyst was noted on an MRI and I was clueless. Being and RN, I did extensive research on this disease I had never heard of. My primary care physician had never heard of the disease either and she had no idea in which direction to send me. After visiting a local neurosurgeon and having a full battery of tests done, I was told there was nothing there to cause my pain!

I gathered all my reports and made a visit to a pain management physician I had previously worked for. He took one look at my MRI, clarified my symptoms, and then immediately confirmed that my symptoms were indicative of a symptomatic Tarlov cyst. On one hand, that was good news as I finally had a solid reason for my pain and it was not all in my head! On the other hand, the pain management physician had no idea where I should go for treatment, but he was quite sure that he was not qualified to treat me.

My internet research kicked into high gear, as I was determined that I could not continue to live my life in my current condition and I had not advocate except myself. I spent most of my days on the sofa, crying. I could not sit for more than 10 minutes, walk more than a few yards, or stand for more than 10 minutes…basically, I had no life! Early in my search, I discovered Dr. Frank Feigenbaum. I called his office and spoke with Debbie West, RNFA. Honestly, I fully expected to get the same “brush off” that I had been getting all along. What a wonderful surprise to have someone on the other end of the phone who was caring, compassionate, and empathetic. She assured me that my pain was very real and that there was hope. Debbie is a shining example of what a good nurse should be!

During my phone consultation with Dr. Feigenbaum he told me he thought he could help me! I wanted to jump through the phone line and hug the man!! He was upfront with me and discussed all the things that could go wrong, and told me could not make any guarantees regarding the outcome. At that point, my quality of life had been in such a downward spiral, I felt that I had no other option than to move ahead with surgery. I had numerous phone conversations with Debbie and learned what a true gem she is. My surgery was set for August 2007. We met with Debbie and Dr. Feigenbaum the day before my surgery. They invited any and all questions from us and gave us the answers that we sought. After meeting both of them, I KNEW I was in the best hands possible.

I am rapidly approaching my two year post op anniversary. I had hoped for a 100% healing, but so far, that has not happened. However, I absolutely consider my surgery a success!! Dr. Feigenbaum and Debbie gave me back my life. I still need to take pain medicine, but the difference between the pre-op pain and the post-op pain was phenomenal!! Pre-op, I was taking large doses of very potent narcotics which brought me no relief whatsoever. Post-op, I am taking a much lower dose of a much less potent drug and I can achieve complete pain control! I have my life back, with a couple minor adjustments, but it is life again!

Should I ever need to have spinal surgery again, I would fly back to Kansas City, no question! I have never met a more caring and compassionate neurosurgeon. I will be forever grateful for the “dynamic duo” of Feigenbaum and West!! God bless you!

I contacted Midwest Neurosurgery in October 2009 (spoke with Debbie West, RNFA) as I had two tarlov cysts that were ruining my life. I explained to Debbie how six months prior, I had the fibrin glue injection at Johns Hopkins in Baltimore, which had failed. I mailed off a packet of my info to her.

Several weeks later I spoke with Dr. Frank Feigenbaum and after answering a number of questions; I expressed my fear but asked if he could help me. He said yes and I said ok.

I got a call from Laura with my surgery date. Over the course of a few weeks, I called Laura numerous times and she was very good with answering questions and never got impatient.

I met with Dr. Feigenbaum and Debbie the day before surgery. I was really nervous but I wanted the truth and they explained what the procedure entailed. They both showed compassion and I believe they really understood the physical pain that I was going through.

My nervousness the day of surgery was compounded by a 3 hour delay due to complications from the previous surgery. Debbie and Dr. Feigenbaum arrive to say they are now ready for me. I know it had been an already long day and I asked them both if they needed to sleep. They laughed and said no and that we need to get started. Fortunately, I had no fibrin glue residue left in the cyst which cut down on excessive tedious work. I later thanked them both for staying late to help me even though they did not have to.

I stayed in the hospital 4 days…both the night and day nurses DD and Tina were very good and understood how to take care of me. The first night was difficult but fortunately by the third day I was walking around the hallways.

I med Debbie and Dr. Feigenbaum later the following week and they were pleased with my progress. Debbie had given some parting advice on how to live for the next 6 weeks to heal heal properly.

Over time I have emailed Debbie many times with questions and concerns. She always responds with advice or recommendations. I do my best to listen and I appreciate her time as I do know how busy she is. I have had several MRI scans and Dr. Feigenbaum has called to discuss the results and I appreciate that also.

Finally, the best news out of all this is that I have my life back. I am not 100% and may never be. Time will tell. What I can say is that I am 100% better and can do most things but I miss skipping rope.

After reading the testimonials, I don’t know what I can add, but “Thank you, God!” for saving my life. Dr. F and Debbie West have a calling that is bringing fantastic results. My surgery for two large bilateral cysts at my S2 and S3 is 2 1/2 years in history, done in January 2009. The nerve path regrowth pain was the only discomfort post-op and that was for only a few months. For years before that, I’d been to orthopaedists and neurologists, all who said they could find only mildly degenerative issues. Finally, I was practically bedridden, unemployed and trying to qualify under Disability.

It was my second MRI of the lumbar spine that brought the issue to light–at least to me and the radiologist who wrote the report. Recently moved to Texas from Johns Hopkins, he was familiar with the pathology of Tarlov cysts and perineural cysts. The lower part of the lumbar MRI picked up these two cysts–and HE PUT IT IN THE REPORT. I’m told most times radiologists don’t even mention it. I called him and asked what these cysts were. That led me to search on the internet and I had almost 100% of the symptoms listed under the Tarlov Cyst Disease Foundation’s website. Thank you, Reta Honey-Hiers, for your compassion and consultation.

I’d had the cysts so long that Dr F said the bone had almost been completed eroded. Dealing with the pain and the ancillary effects is hard enough but to get diagnosed with a rare disease is another added challenge. To educate physicians on the facts and available treatment gives us post-op successes a mission!

I found Dr. Feigenbaum through the Tarlov Cyst Association website after I was diagnosed with Tarlov Cyst in September of 2009. I sent him my MRI films and report and was pleasantly surprised when he himself called me back. I have never had a doctor call me himself, let alone take so much time listening to my symptoms and asking questions and generally caring. I was very pleased after talking to him and together we decided that surgery would be the best option for me.

After a long fight with insurance to get the surgery approved since it was out of state and many phone calls with Dr. Feigenbaum’s nurse Debbie and his office assistant, Laura my surgery was scheduled for September 21, 2010.

I was frightened terribly at the thought of having surgery in another state by a doctor that I had only spoken to once on the phone! They helped ease my fears by sending packets with information about the hospital and the area. Laura set up housing for me and my family on the hospital campus.

After arriving in Kansas City two days before my surgery I saw Dr. Feigenbaum for my pre-op appointment and was very impressed with his concern over my condition and the time he took to answer my and my family’s questions, and by his overall professionalism and in-depth detail of explaining everything that was going to be done to me before, during, and after surgery. Debbie was by his side the whole time and stayed after Dr. Feigenbaum left the room to answer any more questions. I learned very quickly that where you see Dr. Feigenbaum you see Debbie. They are a great team!

The day of my surgery went beautifully! I couldn’t have asked for better care from the hospital staff! They were wonderful! My surgery was successful and took just a little over two hours. Debbie came out and explained everything to my family. The rooms were neat, clean, and had very modern equipment in them. The nurses on the Neurosurgery ward were wonderful! They worked with me non-stop that first night. All of the nurses on that floor know Dr. Feigenbaum’s protocol for all of his Tarlov Patients and have no problem following it.

After two days in the hospital Dr. Feigenbaum released me to go back to the condo until my post-op appointment with him the following week. He answered all of my post-op questions and was very pleased with my progress. I saw him a week later and was released to fly back home to Louisiana. He and Debbie made sure that all my questions were answered.

I am now four months post-op and doing much better. I have some days that are better than others, but I am able to sit and stand longer than I was before the surgery. My pain has been reduced from a ten to around a four or five. I have flare ups often, but that is to be expected. If I have any questions or concerns all I have to do is pick up the phone and I will have an answer before the end of the day. That is not something that you get where I live with doctor’s offices.

If you have been diagnosed with Tarlov Cysts, I highly recommend that you contact Dr. Feigenbaum’s office for a consult. He is wonderful! I have no idea where I would be today without his skillfully guided hands that God gave him to help heal people! He is the best of the best!!

It has been nearly a year since my surgery. I can say with confidence that the procedure has restored my life. Following my accident, I lived with pain and spasms everyday, for nearly five years. I was declared to have a permanent total disability , with no hope of recovery.

I continued to seek treatment for my disabling injury for many years. Every MRI performed revealed the presence of a perineural cyst at T5-6. Each report of findings stated that the cyst was incidental or asymptomatic. I experienced severe pain and spasms, thousands per day, every day, as a result of this cyst. I was prescribed a wide range of medications to address the symptoms, and continued to push myself through physical therapy. Despite all efforts to eliminate, or control the pain and spasms, they continued. My last spasm occurred at the Research Medical Center in Kansas City on November 30, 2010 while I was awaiting my surgery.

I am now completely free of all pain, spasms, and medications. I, my family and friends are grateful for the efforts of the medical team of Dr. Frank Feigenbaum and the Tarlov Cyst Disease Foundation.