Hi,
Dr. F. recommended surgery for 5 Tarlov cysts at s1 to s3 due to compression of sacral nerve roots. He stated no guarantees. The nurse stated regarding success depending on what was damaged nerves before surgery. This is scary!
If decide no surgery, the nerves could get worse with damage due to the cysts.
Does anyone have any post op surgery results over 2 years with good or bad results?:confused: Thank you.
Kathryn1, 62 years old, but young in mind and heart!

I am 68 and in the same position. My surgery is scheduled for the 18th of Dec. Besides pain I have terrible internal itching. I would like to hear from anyone who has had success and has had this terrible knawing itch also.
Nonna

Nonna, and Kathryn,
I will at respond to the concerns that you both have. My surgery was on Nov. 30, 2010. I understand that not all patients have the perfect outcome that I experienced, but some of that could be explained by how severe the damage has been to the nerves and surrounding tissue. I am now nearly three years post-op, and I am able to do nearly everything I did prior to my accident. The damaged nerve(s) bothered me for some time after surgery, but I continued with my physical therapy and worked through that. I am 61 years old, and was disabled for nearly five years. I am willing to speak with anyone who has concerns or questions about Tarlov cysts, the surgery, or the recovery process. You can private message me with your phone # or I will give you mine if you want to speak by phone. Full disclosure: I will be serving on the board of directors for the Tarlov Cyst Disease Foundation beginning in 2014. It is one way that I can give back to those who restored my life.
David

Hi Nonna,
I am concerned also regarding surgery. Due to insurances change in Obamacare and being on Social Security Disability but not on Medicare til March, 2014 I am waiting til Medicare become effect. Can I ask you if Dr. F's office gave you what it will cost, your insurance, and if any balance you might have to pay? Where are you from? I am in MA. I do not have the internal itching but do have butt pain, burning, numbness and tingling down the legs, back of my thighs pain, cramping in feet, which prevents me from working. I wish you success in December and hope all goes well. Thank you for your support.
Kathryn1

Hi David,
Thank you for your reply. I would appreciate more information of prior symptoms to surgery. It sounds like a long recovery but was worth it having the surgery. If you could email me with more information, then I can give you my telephone #. THank you again.
Kathryn1

I have tarlov cysts as well as fibro and a couple other things and I couldn't for the life of me figure out why I was itching soooooooo bad. I went to at least three different doctors and one a few times but nothing worked. Finally I tried my own thing and dropped sugar and any yeast breads for at least a couple of months. I also change my toilet paper. After almost two years, it went away. I occasionally eat sugar but not much and I definitely eat breads but I've stayed with the same new toilet paper as much as possible. I don't know which remedy worked or if this will help but it did me. I hope it will help you. It can be miserable.

Karhryn, I am also looking at surgery and wonder if you had any response to your question.

I guess everyone who had the surgery is better and not on here. I did get one woman tell me to check out Dr. William Welch in Pennsylvania. She said 2 people she knows both had good results including herself. I called today and was told he won't remove the cysts unless you have tried aspiration or fibrin glue without success first and referred me to Dr. Long in Maryland.

IF dr long says a letter that you want surgery, you don't have to have FGI first. I had a friend just went there yesterday with no FGI and he was willing to do surgery. JUST have dr long send a letter or send what papers dr long gave you in the past. My GF couldn't get hold of dr long so she sent them the info. I know people went to see him too with no FGI & he was will to do surgery. WHo ever said that, it is not true. Sorry that happened to you.

I am the one who had the successful surgery with him in 2011. I was back to work in 3 months. I had FGI because I wanted to try that first. Not because I had to do it.

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