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← Return to Perineural or Tarlov cysts
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Hi Jennifer,
Apologies for the delayed response to your post. It sounds like you've gathered a fair bit of information about Tarlov cysts. Here is the info sheet from NORD (National Organization for Rare Diseases) https://rarediseases.org/rare-diseases/tarlov-cysts/ It's one of my go-to websites for rare conditions.
Have any other treatment options been considered besides surgery?
I'm tagging a few members to bring them into this discussion. @ashleykingsley talked about Tarlov cysts quite a few years ago on Connect. I'm hoping she still receives notifications and will return to the discussion to share with you.
@pkindron, you mention a sheath tumor on the nerve root on your spine. Does your experience some similar to Jennifer's?
Replies to "Hi Jennifer, Apologies for the delayed response to your post. It sounds like you've gathered a..."
Colleen thank you for the reply. There are other options besides surgery, one of them is an epidural in that area which I'm going to try on Tuesday. If it relieves the pain then we know that that's the problem. And if the pain returns after the epidural wears off there's only two options surgery, or they have a treatment where they inject some type of fibrous glue into the cyst to plug the hole that goes into the spinal column so you don't develop a spinal fluid leak. None of them sound very fun to me. So were starting with the least invasive maybe it will hold me over for a while. I have also read that the bones will deteriorate in that area if you don't take care of the problem. I really don't know what time means.
Thank you for the websites I will definitely look into them. I appreciate any information I can find on what I'm dealing with. Thank you Jennifer
I think the best site for Tarlov cysts, also known as perineural cysts is The Tarlov Cyst Foundation (not to be confused with the association mentioned in another post)
Hi I am MSMESS... I have several 4 or more perineural cysts on L1-5 and one of them inside my tailbone. I have done PT on and off for 20+ years. I also have degenertion of spine. I have also had numerous cortisone injctions mostly at L1 and L3. Just before COVID I had a caudal block and that was the best improvement of symptoms for 3 months or so. Surgery has been discussed by 2 neuros I saw, but to be told it would not make me worse but could not give me an estimate of how much improvment I may see, I decided against it. The ortho that did my caudal told a n intern that was shadowing him that the spinal fluid within cyst could make things worse if ruptured, but neuro said the cysts were not a concrn and NEVER cause symptoms. I have read that and read they are now finding some become symptomatic. Not sure what to think about surgery for degerated discs along with these cysts.
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Thank you for your reply I really appreciate it. First the question you asked about other treatments, yes my pain management doctor is going to try just an epidural in that area on Tuesday. I think it's for relief of the pain but it's also diagnostic to see if for sure that's what's causing my problem. I could go on doing that for a certain period of time but I don't think it's in definite. I think you have to look at surgery if it keeps coming back because from what I've read the bones will start to deteriorate, I don't know.
As it is a cyst that starts from the spinal nerve root. Mine is on my S1-2S. I'm not sure if it means that both of them are involved, or I have two one on each vertebrae. I don't believe there's a disk that far down, so I don't know if the cyst can be between them both. Sure about any of this I'm a little confused although I've talked to a lot of people it is a rare condition. From my understanding there's just the one doctor in Texas who is the expert on the cysts.