Dear painintheazz,
The question is to have surgery or not? As you can see, not many replies after 2 years or more results from patients after having surgery: good or bad. There is limited information to find first hand experience from patients. THe other question: How much pain are you in? Can you still function doing normal routine activities? My opinion, as long as I am able to function with daily living activities without outside help than surgery right now is not the answer. Having surgery is very risky on the spine and doctors cannot guarantee results. There is always the possibility that you could be worse after surgery. If one is desperate, than go ahead and have surgery. If not, look into other ways to combat pain and to live a relatively normal life as much as possible. I live with nerve pain in the legs, feet, and muscle spasms in back daily, limited to walking 15 minutes and best in recline position when sitting but I can still enjoy life otherwise. I am on disability. Your brain is controlling the pain, program the brain differently and see what happens. Try yoga and meditation and massage. Best of luck to you.
Kathryn1

Did you meet with him in person? I am going through this now and I cannot deal with the 24/7 pain and am considering surgery.

Hi Katrina, where are your cysts and what are your symptoms? I am also trying to decide whether to contact Dr. F in Texas or Dr. Henderson in Maryland. I think Dr. F is supposed to be the best, but I live in the DC area so may see Dr. Henderson. Do you have other issues with your back that can complicate this?

Hi Catrina,
I did not meet with Dr. F in person. It was a phone consultation. This made me leery also. He had all my files, MRI's, etc. but to recommend surgery without seeing me made me uncomfortable. Also he asked if sex relations were painful. I stated I was not sexually active. He writes on his report that sex relations are painful. This also made me leery. Dr. F. is considered an expert in the field regarding Tarlov cysts, but, as I stated before, I am not desperate at this time to relieve the off and on symptoms that are severe with surgery. If I was you, I would look into Dr. F's history of success with patients and see him in person. Do not do a phone consultation! Also, ask yourself if you will be better off having the surgery? How many cysts do you have and where are they? Have you been to a neurologist, pain education doctor, tried yoga and meditation, physical therapy. biofeedback? Operating on the spine is very invasive in which you could result with incontinence, bowel problems, nerve problems that could be worse than you have now. Try all options before considering surgery. If you are one of the lucky ones with good results after surgery, good for you!
Best of luck and I hope you find the right answer.
Kathryn1

Dr. Feigenbaum's office called me this week and asked how I am doing. I informed Laura, Office Manager that I was leery due to Dr. F's letter stated that sex was painful when it was not since I am not sexually active. Laura was very nice and stated will take this off my record. Also, that there must have been a miscommunication at the time. I was appreciative of her calling and probably was miscommunication. She stated if I had any questions or concerns to call her office anytime. Also, to reconsider surgery due to waiting could make my symptoms worse. I am seeing a different neurologist at the end of July for a second opinion and more information and maybe referral locally to a neurosurgeon for a second opinion. I am sure that Dr. F is highly qualified to operate on Tarlov cysts and I have confidence in him. I need more reassurance before proceeding to Tarlov surgery at this time. I am very scared!
Kathryn1