ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: suz on November 24, 2009, 09:44:21 pm
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Hello all,
I have not been on this duiscussion forum for awhile but it is sure nice to know that fellow W&W-ers are there.
Recently had an MRI of my lumbar spine for back pain and the MRI showed multiple "perineural & Tarlov cysts" which are essentially cysts that wrap around nerves near the spine. Not sure yet what the implications are of this but I though it was odd that I had was another type of growth around nerves like my AN. I know this is a long shot but has anyone else had this type of cyst also?
Suz
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I am replying to my own post so that I don't have to look at that "0" under "replies"! Haven't checked the discussion forum since I posted that comment. Logged on tonight hoping to find a bunch of replies from others that have perineural cysts and tarlov cysts along with their AN's, but I guess I will remain in my own unique category.
May you all find peaceful moments and laughter with loved ones this holiday season,
Suz
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May you all find peaceful moments and laughter with loved ones this holiday season,
Suz
Hi Suz,
I read your post this morning and wondered how you are feeling with all this?
Are the cysts painful or causing pain or some other symptom?
I am sorry i cannot be of more assistance... From someone who also has a sister with an AN (not NF2), i can relate to your situation - what are the odds and what do they mean? Did you try the search method here on the Forum? Perhaps you will find a different thread with additional information.
My thoughts and prayers are with you today.
Keep the faith.
I love your holiday wishes! Simple, elegant.
I wish you the same.
Sincerely,
Sue
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Hello Suz,
If it's any help, there's a Tarlov Cyst Foundation site that has more information. The FAQ is at http://www.tarlovcystfoundation.org/FAQs.asp
The thing that AN patients worry about is NF2, which can sometimes be indicated by multiple CNS (central nervous system) tumors. But according to the FAQ site, Tarlov Cysts may be caused by CSF pressure. It didn't mention AN. It may agood idea to ask your doctor if the cysts could be related to AN. Good luck to you in finding relief to your back pain.
Regards,
Rob
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Suz ~
I"m sorry to learn of these spinal cysts the MRI discovered. I hope they're not going to present a problem for you.
Unfortunately, Tarlov cysts appear to be a relatively rare occurrence and likely not closely associated with an acoustic neuroma, so our members are short on information. I can tell you from experience that this doesn't happen very often. I trust that you'll be successful in finding out more from the Tarlov Cyst Foundation referenced by Rob ('HeadCase2') and your doctor, of course.
Jim
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Thanks for the support - I had found the tarlov cyst website also which was helpful. Saw my AN doc last week and he said he "knows of no connection" to AN's. Just two unusual conditions in one bod!
Suz
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Hello, I also have Tarlov cyst in my neck and Acoustic neuroma. How are things for you now?
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Hello Toet101,
I have not been on this forum for a long time. I just saw your post and I'm glad to know that I am not alone!
Those cysts have not presented any problems for me in years. The job that I had at that time involved a lot of bending and I think that exacerbated the pain. I don't notice it much at all. Just an incidental finding.
Suz
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hello. i realize it's been 15 months since last post to this topic, but just wanted to add that i also have tarlov cysts. MRI showed one on T-spine, and several in sacral area. i have pain, numbness, and weakness in left leg and foot, and a moderate amount of low back pain. I also wondered if these cysts were somehow related to the AN.