Recently I had a MRI and It revealed a Prominent Tarlov cyst anterior at L-5 S-1...I have read many reports stating this was very uncommon for one to be located in that area.My question is will this cause sciata in my right and left leg.Also is this disableing.
Thanks
Runninghorse

Runninghorse:

I can tell you this, I have a tarlov cyst on my S-1 joint which is right on the tailbone. I do not know how large it is. I have had constant burning through bottom, legs & feet. This has been going on since 11/07. I've been to a Neurosurgeon & Neurologist for testing/MRI's. They cannot find the cause. The Neurosurgeon says it's not the cyst causing the burning. ???? It's been very frustrating.

I am still in the early stages of doing my own research. Sounds like many are since the Drs. cannot find the cause(s).

Annette

I just found out yesterday that I have Tarlov cysts. I had been having severe discomfort on my left side for quite awhile, and then just about 6 weeks ago it started on my right side. I thought it was just from spasms the right side. it has been so bad that I was in bed for a week on muscle relaxers and narcotic pain killers.

I am quite shocked to read that there isn't many neuro doctors out there that are qualified in this field. I will be calling John Hopkins on Monday and Georgetown to get an appointment. I live in Arizona, but from previous illness I know to look beyond and go beyond to find the best in there field. Many internist, family doctors, and neurologist that aren't equipped with the knowledge do little good for us.

I have another rare disease that I had to go to Philadelphia to see someone there, as just being put on medication and side effects to those, etc...surgery is my very last option that I am willing to do...

I am on disability and was looking forward to finally going back to work...now this!!

Will keep you posted as I find out more and please keep me posted as to what you find out..

Thank you,

Alix

It has been two years since you wrote about your Tarlov cyst. I have them too. I also live in Arizona. You had mentioned that you were unable to find a doctor that could help you in Arizona. Did you ever have any luck?

I sent my MRI"s to John Hopkins they wouldn't help me. I had surgery Decmeber for my cysts. I had same symptoms as you. Mine just kept getting worse. I hope they help you . Amy

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

It is unfortunate but true that many well respected surgeons do not "believe" in Tarlov cysts. I had one tell me that it was "hogwash". Wow. Well I am one week post-op from having the surgery to treat my cysts performed by Dr. Feigenbaum. The post-op pain is not nearly as severe as I had imagined. The recovery process is slow and and improvements in my symptoms are still pending but supposedly that is normal. Nerves need time to regenerate...much longer than muscle tissue.

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