Hi, I would love to know if the surgery was a success? Any negative affects? I also live in MI and am looking for someone to help me, I went threw 30 neurologist/neurosurgeons in the phone book and none know anything about it.
Thank you so much for your help, If I find someone ...I will let you know.
Thanks, Khris

[QUOTE=kittycatdoglover;460319]Hello
I have had the surgery for the tarlov cysts and if anyone would like any info on the situation please let me know. I had to travel out of state and had the problems with insurance as well. Its very frustrating the lack of Doctors that can help us. I cant even find a Doctor in Mich that is willing to be my follow-up Doctor. If anyone knows of 1 in Michigan that is willing please let me know so that I dont have to keep traveling so far away. Thanks so much
kittycatdoglover[/QUOTE
I am now 4 months post surgery and have this pain I can't describe well and can't really tell if it is my tail bone or my rectum. It feels like nerve pain constant but at times worse than others. I am back at work and have been for almost a month. I also have sciatic pain on the left side only that goes to my knee and some times to my ankle. Doc (NS) they are going to want to run some test on the first pain but that the sciatic pain is not related to the surgery which I have a hard time believing since I had it before the surgery and it appeared related at that time. Any info you have about your recovery would help. Thanks Charlotte Clark

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

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.

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.

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.

You've probably already had someone contact you about sacral tarlov cysts. Contact the tarlove cyst Foundation. I have one s2-s3. Causes bowel, buttocks, sciatica, leg, thigh and foot pain. On morphine. Would love to know if the surgeries are successful. Tarlovpain

hi there.... just found this group

I have sciatica ongoing ...quiets sometimes ... diagnosed 4/11 with TC
at S2 ..left side... sciatica usually left side (leg, buttock, down leg to foot);
numbness ... started out feeling like I had socks on .. inviible ones !

I am getting my MRI and sending report to Dr Frank Fiegenbaum, KC;
*edit*

Bestof luck, Jean K, NC

Lots of pain in the hip and buttocks with sciatica down the whole leg.