Who did your surgery and where??? I am sorry you have new pain I hope it goes away.

I am interested as well - also have TC need NS
 

I would love to hear a success story!

Suz

Okay....here is my success story. I was injured in a fall in March of 2006. I got "stuck" in the madness of our workmen's compensation insurance system for six months, then was released when they said there was nothing more they could do. I refused to accept the Dr.'s prognosis that I would never recover, and that I would gradually get worse. While the perineural/Tarlov cyst was apparent and noted on the first MRI, it was noted as "incidental". Follow-up with specialists around the country confirmed the presence of the Tarlov cyst at T5-6, but it was always dismissed. Even though I had been declared "permanently total disabled", there was nothing that could be done...only medications to ease my pain and symptoms.
I did a google search of tarlov late one night, and found the Tarlov Cyst Disease Foundation website. Eventually I made a connection with the staff of Dr. Frank Feigenbaum, and this is where the "success story" begins. From the date of my first contact with his office to my first "personal contact" with Dr. Feigenbaum, nearly a year had passed. During that time he reviewed my extensive medical records, then referred me to a "teaching unversity" for a complete evaluation and non-invasive treatment at their pain management center. On November 30, 2010 I was given the opportunity to once again be a productive member of society, and greet each day with joy.
During my years of disability, I lived with continual pain, thousands of muscle spasms per day, a life controlled by medication, and limited mobility. I am no longer on medication, no longer use two canes to walk, no longer experience the muscle spasms. I am back to operating my construction business, running my farm, hiking, canoeing, rafting, and enjoying life.
Yes, Tarlov cysts do cause pain and other systems. And no, the world is not flat. Slowly, the world is becoming informed.

Tarlov Cysts (need your advice)
 

helo kittycatdoglover

i'm ethan from malaysia. i have a 33 year old girlfriend who just recently diagnosed with Tarlov Cysts. she has 2 of them at the S1 and S4 part of her back bone with the size of 0.8 and 1.3 respectively.

she also suffer from autoimmune disease and pain on some part of her joints and body. she always tired and not in the mood sometimes and abit of libido. yes i expected the doctor didnt have any solution for this medical issue.

please help me to help her recover. i really in need of your advice so much.
i love her very much and its killing me to see her like that. she a lovely young lady. she is a brilliant baker & sugar artist.

please help me, i really need your advice.

please email me and thank you for lending me your ears.

I had tarlov cyst surgery in April of this year in KC with Dr. Feigenbaum. I would recommend his team to anyone with this terrible disease. To contact his office immediately. *edit*
He is strait foreword and will help you.

Doctor
 

Dr. Feigenbaum is in Dallas. Check his website. Just type in his name.

I have just been diagnosed with these cycts in my cervical spine (C-6 & C-7 and T1 & T2). I have been trying to find more info but it seems these are very uncommon in the upper spine. Can you help me to find the info related to my condition please? Any info would be helpful! Thank you.

What kind of doctor to see for Tarlov Cysts
 

I was in a car accident a little over a year ago and starting the next morning I began experiencing severe low back pain that has only gotten worse. I never had back pain prior to that. I was however having tingling in my left leg that was keeping me up at nights, some nights only getting 2 hours of sleep. When the back pain started, it seemed the tingling moved from the left side to my right hip down through my right leg. The pain in my lower back is excruciating some days that I throw up as soon as I wake up in the morning. I have so much trouble just going up and down steps. I have always had an active lifestyle before this all started. I used to always go hiking, kayaking, biking, running, and now I am in pain just from driving to work 3mi from my house, or getting out of bed is very painful. The most simple things that I never even thought about before, now cause me pain daily. I went to chiropractic therapy for several months, then physical therapy, and even did acupuncture for awhile. Nothing has helped. It took 6 months before my pcp referred me out to a specialist. I saw a physiatrist that said that I had a tear in the sacroiliac joint & two herniated discs. He was more concerned about the joint so did a sacroiliac injection which was horrifying! It did me more harm than good. I could barely walk for 4 days and the pain was unbearable. Needless to say, I didn't go back. My pcp then referred me to pain management. At first I felt like there was a light at the end of the tunnel, but after awhile and after 3 spinal injections that did not work for more than 2 days, I feel like their treatments are not working for me, and that they are fine just keeping me on heavy pain meds. The pain meds help, but they wear off and I don't want to be on them forever. I want a resolution to the problem. My MRI showed that I have 3 Tarlov Cysts and like many of you, the doctors are saying it could, or could not be causing all the pain, that they can't really say for sure. I'm at my wits end and this is getting depressing. I just want my life back and am tired of pain getting in the way of enjoying life the way I used to. What kind of doctor do you see for Tarlov Cysts? I'm not at the point of giving up yet, but I know if I go to another doctor that is useless, I just might get to that point. Does anyone have any recommendations? Neuro or ortho? I just want to make sure I see the right doctor so I can try to get the help I need.

I have them in my low back, causing me sciatica pain, as well as a bit more uncommon. the neck area. the pain I am in is debilitating. I know we can all sympathize with each other. I am taking carisoprodol for fibro pain. that is what I am taking at the moment, as I have had such bad reactions to many of the pain relievers. and which one of us just wants to mask our pain. we need something done in our behalf

I have one in same area. It is two the right of s2. I think it is from being thrown from a horse. I had very bad sciatica upon the first injury. Couldn't walk for a week. Over last five years have become steadily worse. Have sciatica down both legs and numbness and tingling going to both feet. Thinking very seriously about surgery with Dr. Fiegenbaum. It's been a real struggle since 2009. Have been putting off surgery because of horror stories I've heard about returning cysts, especially for those who have the herpes virus from shingles or chickenpox in their bodies. It resides in the s2 spinal nerve area. **. My health has really deteriorated.