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LALOV929 09-11-2008 06:48 PM

Tarlov's Cysts Anyone?
Hoping to hear from someone even the least bit knowledgable
about Tarlov's cysts. They form around nerve roots along the
spine and when sever (rarely) cause chronic pain. An MRI at
Mayo Clinic just revealed my ladylove has them. She has been
in unexplainable chronic pain for decades on strong opioids and
this may be the reason. Any info welcome and appreciated.

hpatrice 11-06-2008 08:30 PM

Re: Tarlov's Cysts Anyone?

I just found that I have one on my C6/C7, Also have a slightly bulging disk C5/C6. The Dr that ordered the MRI said "wow" your c-spine looks great! Yeah, sure, great, other than pain. I have been having severe chronic pain since a car accident 2 years ago which includes pain in that exact location, radiating pain into both arms, head, also TMJ, a movement problem w/ my tongue, chronic headaches, and too many other neurological problems that have been showing up almost every day now. The Dr.'s are fairly reluctant to say that the cyst would be causing any problems but I can't see how it couldn't be when I am symptomatic due to it's location. I certaintly don't think that this is what is causing everything but some at least.

I have done some reading about these cysts, on my own, as dr.'s seem to be unwilling to discuss the fact that it could be causing problems but I have not come up with much other than most are not problematic. I have done some reading about schwanoma's (sp?) and how they are difficult to find. I am wondering if maybe this Tarlov cyst is maybe that, that would sure explain a lot. The radiologist's do miss things sometimes.

They have recently (yesterday) diagnosed me with central pain syndrome as well. I have been on and am currently on many meds, their explanation was that this syndrome requires "sedation".They have tried about 15 different meds on me in the last 2 years but I get extreme side effects from most.

I am sorry I cannot offer much help but can tell you that while these cyst's can be fairly common as they have told me, I DO know that they can cause pain. I am on a mission to find out what is wrong w/ me and this cyst is high on my "suspect" list so hopefully I will find out more w/ the new dr.'s that I am seeing.

LALOV929 11-07-2008 04:44 PM

Re: Tarlov's Cysts Anyone?
Thanks, hpatrice, for your response. My gal has them all the way
up her spine from sacrum to between shoulder blades. Usually
they are located near the sacrum only. I would think having
them at C6/C7 even more unusual. Those neck vertabrae are so
crucial to so much. Hope you succeed in learning and managing
those cysts.

nanajo56 03-06-2009 03:47 PM

Re: Tarlov's Cysts Anyone?
I have two tarlov cysts, both are on the S2 level one on each side. I have had back and leg pain on the right side (the first tarlov cysts was located on this side) since 1999. My neurosurgeon says there is "NO WAY!" that this cyst is causing me problems, even though no one has never figured out why I have this pain that runs down the leg (had every test you can think of). My neurosurgeon says he will never operate on these cysts because of the danger. He said too many nerves run through them. One of his associates did a surgery on a tarlov cysts and the woman had no bladder control. He had to go back in and re-do some of the nerves. Now, he won't do any surgeries. I had a spinal cord stimulator implanted but now it doesn't help at all. I have just accepted the fact that I am going to have pain for the rest of my life. I wish scientists would study this strange cyst more than they do (which I don't think they study it at all). I really believe that most of my pain is coming from this cyst. Wish they would drain it and use a blood plug to plug it up for a while. People have done this at John Hopkins with success for a few months but then the spinal fluid leaks back into the cyst.

Good luck!

Gram4 09-15-2009 04:34 PM

Re: Tarlov's Cysts Anyone?
I hope you're still on here, I had a bad fall last Nov, pain in lower back, groin & into right thigh. I went to a new chiro & he ordered an MRI. One of the things it says is Tarlov cyst e/septation 30MM. He wants me to see a neurologist but from what you sd they are not going in there if I can help it. He sd if I loose bladder control get to the ER right away it's an emergency! Now back quite awhile ago I was urinating alot like every 20min but now that seems to have let up, I'm hoping thats a good sign. I almost wonder if he should be doing manipulations on me. Any help would be appreciated.

maclin 05-07-2010 02:25 PM

Re: Tarlov's Cysts Anyone?
If you visit the National Order of Rare Diseases website you will find info there. < edited > Also Dr. Frank an expert. Just Google his name. He did my husbands surgery on his meningeal diverticul which was originally diagnosed as a Tarlov Cyst. Noone in our local vicinity would touch him! We had to go to Dr. Feigenbaum in Kansas City, Mo to have his surgery, but thanks to him my husband can still walk today, even tho he is still having problems. Anyone out there have a meningeal diverticulum? If so email mail plz and let me know your results....Its very painful I know....Good luck to you ALL! Maclin

Lilacs&Lillies 07-08-2010 08:44 PM

Re: Tarlov's Cysts Anyone?
I have been suffering chronic sacral pain and pain down one leg into my foot with these things for almost a decade. I am so tired of living with this pain, but also terrified of the surgery and the possibility of complications. Initial neurosurgeon said it's just too delicate, like sewing wet tissue paper. Pain management said it's eroding the bone and really should have them taken out. Easier said than done. Getting a second opinion, but am not at all optimistic. All the options are crappy. (sigh)

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