Hi, I'm new....and not so happy

[kibbutzguy]

Three days ago my internist told me I have a large Tarlov cyst on S2. This was determined via an MRI ordered because of extreme intense leg pain and zero reflex. My internist has ordered an appointment with a neurosurgeon for this coming Friday. After reading many posts on several sites, the realization that many of my aches and pains [which I tend to ignore and move right through] are symptoms of Tarlov Cyst Disease. I'm really frightened. I'm a 58 year old strong and generally very healthy guy who has lived by "sure, I can do that" and I have. Suddenly, I find myself entering into a fog of great unknowns and possible major change in life. Since diagnosis, my pain management has been provided by Vicodin, it's not so good and take it only when absolutely needed and I also use medical marijuana which does little for pain abatement but when it hurts, I don't mind so much and as a mood elevator, it's fantastic. My intent is to talk to the neuro surgeon, get info and get out. Before a knife touches my skin, or any other form of treatment, I need to learn as much as possible. Guide me, please.

[HerMajesty]

Hi, Here's the thread we have going on about tarlov cysts:

http://www.pudendalhope.info/forum/view ... ?f=9&t=379

I believe I am the only person regularly using this board right now, who is going to be having surgery for S2 tarlov cysts in the (hopefully) near future. This Board moved from another location about a year ago, and the old info was lost...on the prior board there were several people with pudendal neuropathy symptoms who had Tarlov cysts at S2, It seems to correlate.

I am very confident that Dr. Frank Feigenbaum in Kansas city is the best in this field and is dedicating more work to perfecting tarlov cyst surgery, than is any other surgeon. He is in demand: I sent my images and records to him and it took him 6 months to get back to me by phone to let me know I am a candidate for the surgery. Now I have to wait again for pre-auth and scheduling. You can hop the line and erase that 1st 6 months of waiting by making an appointment and travelling to see him for an office visit.

The Tarlov Cyst Disease Foundation "contact us" form will lead you to the President who is very dedicated and will almost certainly give you a personal phone call and answer all your questions. On the thread I linked to, you will also see that Yoland, who had the surgery, gave a recommendation for what she found to be the best online tarlov cyst support group, although I have not joined yet.

I am very confident about this surgery after having spoken to Dr. Feigenbaum; he does them routinely and is getting good results. I just wish I didn't have to wait so long! It's great that definite pathology has been found to explain your pain, that is half the battle! My advice to you now is research your providers and don't let just any neurosurgeon touch you. Go with somebody you have confidence in, even if you have to travel.