Trista, would you have the surgery again? I've been contemplating for several years. I haven't heard from anyone that is a more than a year postop and I hear the cysts reoccur and sometimes come back worse.

I had an contrast pelvic MRI looking for Pudendal Neuralgia. I have Vulvodynia a very severe burning pain. The MRI diagnosis was this.

"There are
bilateral sacral Tarlov cysts seen at the S3 level measuring 1.4 cm
each, but of doubtful clinical significance."

Are those small cysts?
That was a year ago and decided to have my primary Dr. look at that MRI again. Could it cause damage nerves in the vulva area? It is nerves from what they told when I was diagnosed with Vulvodynia.

Jewels,

Isn't it interesting that "Vulvodynia" is a disease with "unknown etology"(in other words, they don't know what causes it!) You are right...your problem very definitely could be coming from the Tarlov Cyst(s) you have. In the sacrum is where all of the nerves leading to the bladder, bowels, genitals, pelvic floor, legs, etc...passes through. ANYTHING compressing nerves can cause pain, nerves to "misfire", or if left compressed long enough.....one can be left with permanent nerve damage to all of those areas.

I speak from experience. Research, research, research and find the best doctor you can and sell your soul if you have to, but seek advice from a doctor who knows about these cysts!

Size doesn't rule whether or not nerves are being crushed....neither does an MRI always report the fact that one has TC's...much less report the proper size of them....some are bigger than they appear on an MRI.

Good luck,
Cathy

Thanks for your input Cathy. I unfortunately belong to an HMO but wonderful one. I've had 3 opinions now and they all say it's probably not the cause.I've gone to dozens of Drs. in the HMO and outside of it. After getting the Vulvodynia the following year I developed numb toes and burning feet and legs. Now, they say it's not connected BUT I disagree. I know my body better than them. Vulvodynia is nerve damage too.I just don't understand it. It really doesn't matter much. I get such bad reactions to all the medications for neurpathy except Gabapentin. I take 1200 for RLS since 1999 and as far as I can tell it's not helping the neuropathy. (SFN) I give up on Drs. Research, research, research!!! I especially don't like Neurolgists. They are arrogant, all of them. Thanks for letting me vent.

I am new to this. My Timy has a tarlov cyst in her tail bone area. Her pain is in her left leg and thigh and butt cheek. She has been in pain for 5 years and no one could find out what it was. We have exhausted all other possibilities and we are sure this is what is causing all her pain. She is scheduled for surgery in Dec. It is risky tho. So we are worried! I would assume that any cyst on the spine could cause nerve damage or at least pain. You need to see a neurosurgeon.
J for Timy