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Tarlov Cyst on the spine: Any advice?

Posted by vadaanglin @vadaanglin, Jan 31, 2019

I have a large tarlov cyst 2.5cm and 3.5cm on the spine in the lumbar region. Some what rare and doctors seem to know little about and say they are nonproblematic. I'm having chronic pain. Any advise will be appreciated.

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tarlovtaylor | @tarlovtaylor | Aug 29 11:25am

@joken what came of the additional testing?

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sheepgirl49 | @sheepgirl49 | Sep 10 2:45pm
In reply to @peacenlove "Hi, I was diagnosed with a Tarlov cyst at S2 one year ago, and again last..." + (show)
Profile picture for peacenlove @peacenlove

Hi, I was diagnosed with a Tarlov cyst at S2 one year ago, and again last month. I received an epidural steroid last year, but no other treatment. Now, symptoms are becoming increasingly worse, including, bowel and bladder issues, neuropathy, migraines. I am studying everything I can, educating docs as I go (so far: GP, GastroEnterologist and Orthopedic Spine surgeon). I am currently searching for a neurosurgeon who has treated these cysts. The Tarlov Cyst Fdn lists 3 docs, in Dallas, Sacramento and Silver Spring, MD. I am in the process of setting up a video call with a surgeon at Metropolitan Neurosurgery in MD (altho the doctor listed on the Foundation's website does NOT take Medicare, so I can't see him). I stumbled on Penn Medicine in PA that lists Tarlov Cyst as one of the conditions they treat, and that seems like a small victory! Are there any other places to look online for a "complete list" of experienced neurosurgeons? I really appreciate a community of folks with whom to share experiences and information. Thank you!

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Hi. I am actually waiting for a call back from Johns Hopkins Tarlov Cyst Program. I was so bad yesterday- almost passing out all day. Called my neuro office who had the on call provider(pa) look at the note. He surmised that the MRI from NINE months ago wasn’t showing anything alarming. What??? Nine months???? Then way do they consistently make you have updated imaging studies done???? I looked sg my own report. Researched Tarlov Cysts. Wow. I check ALL the boxes. I know I need a neuro surgeon to TELL me what’s going on, but good grief. I have multiple in my cervical spine, thoracic spine AND lumbar spine. You can’t tell me that my pain, debilitating weakness, dizziness, fainting, bowel issues, bladder issues, headaches. Foot pain, unexplained calf pain. Inability to stand and walk for more than an hour tops, has nothing to do with any of this. Praying that I get answers. If they tell me I’m a loon then I’ll except it from Hopkins.

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sheepgirl49 | @sheepgirl49 | Sep 10 2:46pm
In reply to @mommacat2 "Hi peacenlove... I had an MRI done end of September 2020 after 8 months of tailbone..." + (show)
Profile picture for mommacat2 @mommacat2

Hi peacenlove... I had an MRI done end of September 2020 after 8 months of tailbone pain (resulting from a fall in Nov 2019 which resulted in a broken tibia, the tailbone stuff didn’t manifest itself till a few months later). All PT people would say was that it was inflammation. Anyway, the MRI revealed 3 Tarlov cysts in S2 area. Now I am in constant pain and the life I knew is gone. I live in PA (near Harrisburg), and saw you mentioned Penn Medicine ... I did make a trip to Johns-Hopkins spine neurosurgery center about a month ago. There was only one surgeon who would even talk to me about it [and they don’t even list Tarlov cysts in their services]. And, because it was a fall (trauma) that started it all, he had me get a CT scan of sacrum and coccyx to rule out any fracture. There was none. Still, he wants me to try getting a steroid injection in the coccyx area first, and see if that helps. If it does help, great. If it doesn’t, then J-H can go to step 2 (the cyst drain/fluid injection) ... petrified of that! An interventional radiologist does that procedure. I will turn 66 in a few months, and the retirement dream my husband and I had seems to be fading .. the places we wanted to visit, the things we wanted to do. It’s like getting through the day is all I can do now.
Can you share with me the name of the surgeon you found that is actually in PA (and if their is any level of experience that is made known)?
I hope your video conference with Metropolitan Surgery goes well ... what a boat we are in huh? So incredibly sad that science does not research methods of better surgery for these damn things!

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See my comment. I live close to you!

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diannj56 | @diannj56 | 5 days ago

I have. 3.1x2.3x1.1 tarlov cyst at the s3 level ...where the sciatic nerve is. I'm a veteran and I have no other ins. I had a pain management doctor tell me it was very large and pinching on my nerves. He referred me to a neurosurgeon. The VA denied the referral. Also my neurologist referred me thinking it could be the cause of all my headaches, again the referral was denied. My PCP at the VA referred me 3 times and if course all 3 were denied. Recently I had a small fall against my car door bug I hurt pretty bad and 3 days later slipped in my garage having a halfway split on a wet floor. The next day I started having really bad pain even worse than before and the next day was even worse. I we t to the ER almost a week ago. He gave me torradol and pain meds. I've also had 3 back surgeries , two about 5 yrs ago a month apart. I went to the vet yesterday to take my dogs urine sample and then stopped while I was out to o get my allergy shot, I was gone around an hour. When I got home I was weak and dizzy. Last night or 4am I woke up crying with sharp rectal pains and spasms, they lasted for 30 min. I'm beside myself. I have an appeal in with the VA but that could take years. In the meantime I'm concerned the cyst will do permanent nerve damage or erode the bone in my sacrum. The ER did regular X-rays and said I have arthritis in my sacrum. I even sent a message to the Presidents office yesterday, bug the govt is shutdown right now. I have a message in with sn attorneys office to find out if I can get free representation for this matter. Anyway I'm going back to my PCP to get follow up tomorrow morning. I'm showing her the MRI on my pelvis that showed the cyst to be larger than on the MRI of my spine. I feel for you. I've been dealing with this pain for a few years and I'm 69 yrs old. It's so hard on me

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diannj56 | @diannj56 | 5 days ago
In reply to @rkbunn "Hello! I realize this is an older post. Did you ever have surgery for you Tarlov..." + (show)
Profile picture for rkbunn @rkbunn

Hello! I realize this is an older post. Did you ever have surgery for you Tarlov Cyst. I have them at S2 and S3. It is affecting my quality of life. I am Awaiting calls from Dr F in Dallas as well as Dr Schrot in Sacremento.

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@rkbunn no I haven't because the VA will not send me to a neurosurgeon. I had 5 referrals last year and they denied all 5 referrals

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