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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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I’ve had a very “prominent” cyst for years. It’s mostly sacral but is so large it’s caused scalloping and remodeling of my sacrum. I’ve been told over and over these aren’t painful. That’s crap. It’s also affected my bladder and bowels. No one will touch it. Most of what I’ve read indicates the glue and surgery rarely work. That they quickly fill up again with spinal fluid.
I’d also read about the doctor in Texas and would like to know how you do. For me, it’s a good year recovering, most of our savings gone and I’ll be 80 in June. So, it doesn’t seem like a wise investment. Especially since my husband was recently diagnosed with Cerebral Amyloid Angiopathy.
Just curious have you had a checkup at Mayo for Tarlov Cysts?
If so, which Doctor? Thank you.
Hi. I have 2 tarlov cysts on low spine, found when doing MRI for low back pain. Result. ..... Tarlov cysts cause no pain and are called inconsequential because they are found when looking for something else. But found NOTHING that could be causing my pain ....
I'm baffled. Tarlov Cysts that are full of nerves cause no pain?????
Who decided they cause no pain. A spine sergion repeated this and said, doesn't make a difference because no one knows how to treat them. Yet?????? Reading does say they can cause bone damage. Beyond baffled!
Anyone know if idiopathic really means idiots? Does this make sense to anyone?
Does anyone else believe if Gabapentin wasn't the answer for everyone for any kind of pain, someone might actually bother looking for the CAUSE of pain that millions of people taking Gabapentin have?' I've only been dealing with back pain for about a year... But no matter which doctor I see, Gabapentin is the answer. Well I have pain you may never find the cause, SO just take your Gabapentin and live with it. Sorry.... I know so many people that were on the wrong meds for years, and didn't find answers till taken off....
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3 ReactionsI am with you.
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1 ReactionA Tarlov cysts was found in my back during an MRI. I was given the same answer as you. "Huh, well I don't don't know". Seems strange that I also have numerous back problems and severe pain. Yup, Gabapentin. Help- NO.
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1 Reaction@taml Here is some information about Tarlov cysts.
https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Tarlov-Cyst
I have 2 tarlov cysts which the doctors have seen for 4 years. I have pain in my vulva so they think maybe since the cysts are pushing on the nerve it is causing my pain. Dr. Patel in Atlanta would do the surgery. He was not sure if he could get to the cysts to drain them. He said if he drained them there was only a 30% chance it would relieve the pain. What are the names of the 2 doctors who drain cysts? I atlease want someone who does this mor often. Thanks for your help
The specialists are Dr. Frank Feigenbaum in Dallas, TX, Dr. Rudolph Schrot in Sacramento, CA, and Dr. Fraser Henderson in Silver Spring, MD. If you need more information, you can go to the Tarlov Cyst Disease Foundation website (search in Google). Click on the hamburger to access the sidebar. Then, click on "Find a Doctor" and scroll down.
How did you like Dr. Feigenbaum? He is the only doctor I have found who specializes in Tarlov cysts. Did you find out early on you had Tarlov Cysts? My GYN thought the pain was due to Vulvodynia until I saw him the end of May. He was frustrated because nothing in the past 4 years had helped. Finally he said the pain must be coming from the 2 Tarlov Cysts. I am sending my last MRI etc to Dr. Feigenbaum on Monday and set up an appointment. I have been to so many doctors at this point I hope he is good and can get rid of the cysts. I had a consult with a interventional radiologist referred to me by my GYN and he told me he could try to drain it but he may not succeed because the cysts are close to my sacral sack. Where were your Tarlov Cysts? I have heard sometimes the procedure doesn’t work. I am very healthy other than the cysts. I used to exercise every day until I got theses cysts. They hurt most of the time. The pain gets worse as the day moves on. Thanks for answering my message.
I am about to call Dr. Feigenbaum in Texas. I have had pain in my female parts so my GYN diagnosed me with Vulvodynia. Finally the end of May since nothing has worked in 4 years he said the 2 Tarlov Cysts in the MRI must be the cause of your pain. He referred me to a doctor in my hometown Atlanta but the doctor said he could try to drain them with a needle but he may not be able to get to them because of my sacral sac. I thought many times these cysts grow on your sacrum. Since Dr. Feigenbaum specializes in removing Tarlov Cysts he can surgically drain them. He is in Texas.