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Perineural or Tarlov cysts
Hi, my name is Jennifer. I have commented on here before but I've never started a post. I have been told that I have fibromyalgia for a long time, I also have had a number of accidents with many broken bones and surgeries to put things back together. All of this has resulted in chronic pain, most of it is down my head/back/pelvis/spine and legs. In an effort to try to see more my doctor did a lumbar and pelvic MRI last week. Turns out I have a cyst on my spine called a perineural or Tarlov cyst. It's basically assistant starts at the nerve root and herniates out filling with spinal fluid. I guess there's like a leak from your spine to this cyst but the system itself is made up of nerves. It's the best of my understanding at this point. Mine is at the S2 location, and can cause pain from your back down your bottom and down your legs and includes some pretty severe headaches because it's upsetting the pressure of the spinal fluid around the brain. Again this is the best of my understanding of what I've been told. It certainly explains a lot of my symptoms that have been contributed to fibromyalgia and broken bones. Again they're not really sure what causes them but they think trauma in that area could be a contributor. I just wondered if anyone else had heard of this or experienced it. It is considered rare, i've come to find out there are only two doctors in the United States to do surgery on it. One of them that's all he does and he actually goes to other countries to help people that don't have access to a doctor that is experienced in this surgery. It's a long recovery and pretty scary surgery because they're messing with your new or nerve root I don't want to think about what the bad consequences could be although I know I have to. I think I've gotten to a point where I'm pretty much flat on my back every day and it's no life, so I'm actually happy to have an answer. If anybody else knows anything about this I would love to hear it or has any experience with the surgery.
Thank you, Jennifer
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Apart from my neuropathy my main problem is my bladder . Have had UTI post surgery because of catheterisation 3 months later still suffering . This whole experience is terrible wish I had never had the surgery . Feeling suicidal can any one help and advise ..?
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4 Reactions@anita1940
Connect does have discussions on recurrent UTIs. Here are the links, https://connect.mayoclinic.org/discussion/recurrent-uti/ and
https://connect.mayoclinic.org/discussion/recurrent-bladder-infections-after-prolapse-surgery/
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2 Reactions@anita1940
Hello Anita,
you’ve probably already found this thread on perineural or tarlov cysts but just in case not here it is,
https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/
Jake
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2 ReactionsAm looking for post operation recovery discussion
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2 Reactions@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!
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1 ReactionI 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.
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1 ReactionI 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.
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1 Reaction@cookiegirl Dear Cookie girl. I had a fusion back surgery at Mayo Rochester, MN. It went from T-10 to my pelvis. I had degeneration that caused a scoliosis and my L4 & 5 had stenosis. My surgery was 9 hours. Had an excellent surgeon. Yes, I was in pain, but they took care of it with 2 pain pills. I had to be in the hospital for 7 days and usually it's for 4 or 5 days, but I had low blood pressure that almost made me pass out. They finally discovered it was the Valium and once they took it away my BP went up. I also had to have a red blood infusion, because my hemaglobin was low. I did fine at home with talking the medicine every 3 hours the one pain pill and then the other one. My husband even woke me up at night to give me the pain pill.
I had my surgery on June 9th and so I am almost 3 months post-op. I hardly have any pain. Sometimes it aches. I am to take shout walks several time a day. My buttock will start hurting on the right side ( that was the side that bothered me before the surgery. I have muscle pain in my knee and below, they are getting strong. Can you get your surgery done at Mayo? I am so sorry you have so much pain, I hope you find a good Neurosurgeon. If you can get referred to Mayo by your primary care. Take care. You will be in my thoughts and prayers.
If you have any specific ? about how to deal with insurance companies, please feel free to ask me. Even being an RN, it was not easy to plow through, but it did help me write letters using specific pointed terms, etc. I will help if I can. You can pm me if you like!