Perineural or Tarlov cysts

That is wise and just keep what I told you in case you want to try that path in the future. Good luck to you.

Thank you for the term Tarlov. I have myoclonic dystonic leg jerks. Since they may be from the brain or spine, additional information is appreciated. No one seems to know much about mine. any time I am drowsy, any time, i get lightning bolt leg jerks that lift my ankle knee a foot or two.O take Gapedentine and Ropinrole only because I was originally diagnosised with restless leg syndrome. Periodic movement disorders happen in sleep. Mine happen at the end of a nights sleep or any time in day. I see a neurologist next week. But, I am googling to be prepared. We all seem to have exotic things the Docs have to bone up on..Yes I know, see a movement specialist. Where in New Mexico.? I have the best group. I'll let you all know what they say.

If there is anyone who has had tarlov cyst surgery and can share post surgery recovery with me I would like to share xperience I had surgery in December last year Still suffering from the neuropathy I had before the surgery.
Any experience of how long it takes for nerve recovery would be most helpful.I am desperate as there has been no improvement in my condition post surgery despite a harrowing three months of other complications like urine retention

Hi, @anita1940, and welcome to Mayo Clinic Connect. I think it makes sense to talk to others who've had a similar surgery to "compare notes." I get it that spending a harrowing three months postsurgery with complications and then not seeing the improvements you'd hoped for from the surgery would be difficult. I had a bladder prolapse surgery that included about that long of a recovery. I would have been incredibly discouraged, having given that much of my life to that surgery, if it didn't help me in the end.

Hoping that others who've talked about tarlov cysts will have some information and thoughts for you about how things went for them after the surgery and any timeline for how long nerve recovery may have taken for them. Please meet @jenapower @bill54321 @arlenejc @qball2019 @cookiegirl.

What are your surgeon's expectations for timeline with improvements postsurgery, anita1940?

@anita1940

Anita, I'm so sorry to hear that you haven't seen any improvement yet and are still suffering. You know, recovery is going to be different for all of us. There are numerous factors that affect the outcome of surgery. How long did you have the symptoms prior to surgery? How badly the cysts are compressing the nerves, possibly where they are located, etc. As soon as my insurance co. gives in I am going to have surgery with Dr. Feigenbaum in Dallas, TX. I'm pretty much bedridden with all these symptoms. I've been fighting them via the grievance and appeals process. May I ask who your surgeon is? I would think they should have given you post-op instructions and talked to you about the recovery process. Aside from reading about other people's experiences, I have found the info. on Dr. Feigenbaum's website to be most helpful. https://www.frankfeigenbaum.com/post-op-information/tarlovmeningeal-cyst-post-operative-instructions Unfortunately, recovery can take up to 2 years and sometimes more. This is because nerves heal and regenerate very slowly. As with any back/nerve surgery there is no way to guarantee a great recovery. You will probably never be 100% again but there should be some improvement. It seems like there are many more positive outcomes than not. Also, arachnoiditis goes hand in hand with Tarlov cysts. I found extremely valuable information at http://www.arachnoiditishope.com I urge anyone with Tarlov cysts to go to that site and do some reading. Please note that I am not a medical professional and my suggestions come purely from my experience and opinion. I wish for your recovery to start going a bit faster for you. If there are any other questions you have don't hesitate to ask. There are many members on here that have excellent advice for you. Take care!

Thanks for your advice and guidance . The surgeon was Mr Adrian Casey and the operation was done in London
And the surgeon said it had gone off well . Despite that I have severe neuropathy and urine infections since December . Have been on antibiotics for months . Very disappointed and concerned surely this could not happen to others. Can anyone tell me if they have had surgery if this is normal.
Anita

@anita1940

There are quite a few people on the Facebcook group Tarlov Cyst Society that share their surgery experiences. I was even more afraid after reading what other people said but there were plenty of people with positive experiences as well. What you need to keep in mind is that everyone is "wired" differently so the extent of the success of the surgery is individualized. No two outcomes will be the same. There are various factors to consider as well such as how long you have had symptoms and how extensive your nerve damage is prior to surgery. Also whether you do your post surgery exercises like you're supposed to. These are just a couple of the factors. Just like with any surgery that involves the spine and nerves, the outcome varies. I don't think it's fair for those that had negative experiences to blame the surgeon because there is no guarantee and this is talked about extensively prior to surgery.I went to see Dr. Feigenbaum and I asked which technique is the best, titanium or mesh. He said the decision on which to use depends on the anatomy of the cysts, locations, etc. For me, my decision is based on my own opinion of risk vs reward. I am currently basically bedridden because I can't stand, walk, or sit for more than a few minutes and I can't sit on my right butt cheek at all. I'm stuck just laying down 95% of the time. I have numerous other symptoms as well. I can't imagine things getting worse for me so I am choosing surgery but have been fighting with my insurance co. to approve it. You just need to do your own assessment and weigh it all out. Don't let someone else's negative experience interfere with your decision. I hope this helps you a little bit. Take care!

I very recently commented on a different site about a very uncommon surgery (not spinal, but 8-9 hours long) I had almost 11 years ago. If it had not worked, well, let’s just say I won’t go there. It DID work and I am fine and forever grateful. For me at that point in my life, quality of life was most important. It was the proverbial rock vs hard spot dilemma. I had MANY battles with my insurance company. I so feel your pain. Good luck with everything!

@wisco50
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Thank you, I sincerely appreciate that. I will fight as long as I need to. I do understand your thoughts about "where you don't want to go". I think everyone in a predicament like this has those thoughts. I will exhaust all options to avoid going there.

I am also diagnosed with tethered cord syndrome and tarlov cyst in sacrum. Have you got your surgery done yet? I am interviewing neurosurgeons for my surgery.