Frequently Asked Questions
From Tarlov Patients
1. What is a Tarlov cyst?
A Tarlov cyst is a dilation of the nerve root sheath or outer covering of the nerve. Cerebral spinal fluid gets trapped inside the sheath and forms a cyst. The fluid in the cyst can put pressure on the nerve inside and on the adjacent nerve roots and cause debilitating symptoms. They can occur anywhere along the spine where there are nerve roots. They are most prevalent in the sacrum or base of the spine. The cyst is the nerve and therefore cannot be cut out. Check out our YouTube page for more educational videos!
2. What symptoms do Tarlov or meningeal cyst patients have?
Symptoms can vary depending on the location of the cysts in the spine.
a) Lumbar and/or Sacral
- Low back pain
- Sacral or tail bone pain, pressure, and/or numbness
- Pain with sitting. May feel like you are sitting on a rock or an object
- Avoid sitting related activities
- Pain with standing
- Pain in the legs and/or feet especially in the back of the thighs
- Leg/thigh weakness or numbness
- Foot numbness
- Bowel and/or bladder dysfunction like constipation or urinary retention
- Privates/perineal, vaginal, rectal, pelvic and/or abdominal pain or numbness
- Pain with sexual intercourse
- Sexual dysfunction like erectile dysfunction, and/or PGAD (Persistent Genital Arousal Disorder)
- Pain and/or numbness in the buttocks and/or between the legs
- Headaches
- Symptoms made better by lying down, or alternating positions throughout the day from sitting, standing, to lying down
- Cervical or neck pain, pressure, and/or numbness
- Shoulder pain, pressure, and/or numbness
- Arm pain, pressure, and/or numbness
- Hand pain, pressure, and/or numbness
- Finger pain, pressure, and/or numbness
- Pain radiating between the neck and shoulder, between the neck and arm, and/or between the neck into hands/fingers
- Thoracic or upper back pain, pressure, and/or numbness
- Middle back pain, pressure, and/or numbness
- Middle low back pain, pressure, and/or numbness
- Upper chest/thoracic pain, pressure, and/or numbness
- Lower thoracic/abdomen pain, pressure, and/or numbness
- Anterior front of arm pain and/or pressure
3. Are headaches a symptom of Tarlov cysts?
No, but some patients state they have headaches, and that after surgery, it decreases. Some patients tighten their jaw because of pain which can lead to headaches. A previous surgical patient found it helpful to use a mouth guard during sleep to relieve symptoms.
4. What causes Tarlov cysts?
We are not completely sure. It could be genetic. We do not know if genetics, lifestyle, or both determine as to why some patients are symptomatic and why others are asymptomatic.
5. Can an accident or injury cause these cyst to form?
In Tarlov cyst patients, these cyst(s) are already present in the body. They either stay the same in size or grow slowly over time. Sometimes after an injury or accident, the existing cyst(s) can become symptomatic; it's not often that a particular injury caused the cyst(s), but possibly caused symptoms to begin.
6. How are the cysts removed?
These unique cysts are the nerves and therefore are not removed but rather opened, explored, and treated under an operating microscope while the nerves are continuously monitored. For other types of cysts such as a meningeal diverticulum it is possible to resect the cyst as long as there are no nerves attached. The goal of the surgery is to remove the compression off the nerve. We are not healing, replacing, or removing the nerve(s) during surgery.
7. What is the plate made of that is placed over the area where bone was removed during surgery?
In your consultation, Dr. Feigenbaum may have mentioned a "man-hole" cover. This plate looks like a clear plastic mesh and is made of a polymer called poly L-lactide-co-glycolide. Over a few years it breaks down to water and your body will absorb it. Over time your body will form a tough scar where the plate used to be.
8. Can the doctor determine how much nerve damage I may have?
Dr. Feigenbaum is not able to determine how much nerve damage has already taken place. He cannot see the degree of nerve damage in an MRI or in surgery.
9. How many Tarlov/meningeal cyst surgeries has Dr. Feigenbaum done?
Dr. Feigenbaum has treated close to 3000 Tarlov and meningeal cyst patients.
10. What additional tests can I expect will be needed before determining if I am a surgical candidate?
Patients will need a dedicated MRI of the sacrum (cervical if dealing with neck symptoms, thoracic if having upper back symptoms, etc.) less than a year old before your appointment; we prefer a closed MRI without contrast/dye.
Some patients will need flexion/extension x-rays of the lumbar spine to look for instability. Others may need a better quality MRI of the area of the spine they are being evaluated for.
In several instances, Dr. Feigenbaum will order a Diagnostic Nerve Root Block (DNRB) to determine if the cyst(s) are the source of symptoms (injecting lidocaine only). If this is the case, we have a local provider who is able to perform such procedure on Thursdays and Fridays, so out-of-state patients tend to stay an extra night while in town.
11. Do I need a referral to see Dr. Feigenbaum?
You do not need a referral unless your insurance company requires one. Typically, patients with an HMO plan will need to have their primary care submit a referral, or those plans who consider the doctor out-of-network. Patients with a PPO plan usually does not need a referral.
12. Do I have to notify my insurance company to get approval for my surgery?
Our office will initiate your surgical pre-authorization and will contact you if additional insurance information is required.
13. How long does it take to obtain insurance approval/pre-authorization for surgery?
Each insurance company varies on how quickly they will respond. It can be anywhere from 2 weeks to 45 days. Typically, we hear from insurance no later than 30 days. If you receive any insurance correspondence prior to us reaching out to you about their determination, please contact our office.
14. What happens if insurance denies my surgery?
We will appeal the denial. The steps vary because each insurance is different. Typically, a Peer to Peer with Dr. Feigenbaum and the Medical Director of the insurance company takes place first; this conversation usually takes place within a week from denial. If insurance does not overturn their decision, a 1st level of appeal will be submitted. We may ask you for additional documentation, but the majority of the information is submitted by our office. We will appeal until all levels have been exhausted. If during this time you receive any mailed correspondence from your insurance company, please notify our office.
15. Once I receive insurance approval, how long will it take to schedule surgery?
Because we book 3-4 months out (from the day Dr. Feigenbaum consents you for surgery), the scheduling nurse will call you between 2 to 4 weeks to discuss surgery dates.
16. Will I need to pay anything prior to my surgery date?
If you are a self-pay patient and do not have insurance, payment is required in full prior to scheduling surgery. Payment options include a cashier's check or wire transfer. If you have insurance, once we have a surgery date, we will collect any remaining deductible and/or out-of-pocket maximum amounts prior to your surgery. Payment options include check or credit/debit card.
17. What is a typical scenario for those coming out of town for surgery?
For example, if your surgery is planned for a Wednesday, this is a typical day by day plan:
If you have already met Dr. Feigenbaum, you will need to travel to Texas on early Tuesday so that you can complete any pre-admission items with the hospital on Tuesday; these are walk-in appointments, but please arrive before 4 P.M. Surgery would be the following day on Wednesday. You would remain in the hospital Thursday and Friday and be discharged to a local hotel on Friday afternoon or Saturday if needed. You will then be seen in our office on the following Tuesday or Thursday for a post-operative appointment. You can plan to travel home after your post-operative appointment or the day after your visit.
Another example, if your surgery is planned for a Tuesday, this is a typical day by day plan:
If you have not met Dr. Feigenbaum in person, or it's been over a year since meeting Dr. Feigenbaum, you will need to travel to Texas no later than early Monday and meet Dr. Feigenbaum Monday afternoon. Any pre-admission items at the hospital that have not been completed may be done so after your meeting with Dr. Feigenbaum; these are walk-in appointments that need to be completed prior to 4 P.M. Surgery would be the following day on Tuesday. You would remain in the hospital Wednesday and Thursday and be discharged to a local hotel on Thursday afternoon or Friday if needed. You will then be seen in our office on the following Tuesday or Thursday for a post-operative appointment. You can plan to travel home after your post-operative appointment or the day after your visit.
18. At what facility will the procedure be performed?
Surgery is scheduled at Medical City Dallas or Medical City Spine Hospital in Dallas, Texas. Patient needs and insurance coverage will determine the location.
19. How many days will I be in the hospital?
Generally three to four days.
20. Can a family member stay with me in the hospital?
Yes
21. How long will I need to stay in town after my surgery once I've been discharged from the hospital?
Seven to ten days, unless you are a local patient.
22. What follow up is done after the surgery?
Local patients: are seen at 3 weeks and 3 months after surgery. The post-operative appointments are most commonly with the nurse. Post-operative surveys/questionnaires are filled out by patients at 3 and 6 months and one and two years after the surgery. Patients are still welcome to come to the office for a follow up if needed during these times.
Out of town patients: are seen in the office approximately one week after surgery. Post-operative surveys or questionnaires are filled out by patients at 3 and 6 months and one and two years after the surgery. These items need to be mailed to our office in Texas to be reviewed by Dr. Feigenbaum.
23. What can I do to enhance my recovery from surgery?
While the recovery can be a long one and very different than other types of surgery there are some things you can do to make it the best possible recovery.
- Follow all your post-operative instructions
- Do not smoke
- Maintain a good support system of family and friends
- Follow your restrictions
- Have a positive outlook and have a motivation to get better
- Eat a healthy balanced diet to obtain proper nutrition
- Maintain a healthy weight
- Don't spend too much time focusing or talking about your pain or symptoms
- Have realistic expectations and be patient with yourself and the recovery
- Walk daily as you tolerate
24. I have trouble sitting, can you recommend a seat cushion?
A “Tush-Cush” will be available for use during your visit in our office to assist in your sitting comfort. If interested, purchases can be made online at tushcush.com or Amazon.com.