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Tarlov Cyst on the spine: Any advice?

Spine Health | Last Active: Apr 21 4:48pm | Replies (219)

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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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Replies to "I have. 3.1x2.3x1.1 tarlov cyst at the s3 level ...where the sciatic nerve is. I'm a..."

@diannj56 what you describe are classic TC symptoms. Sometimes our nerve pain is not perfectly aligned with the ‘typical’ pattern for a certain level of pain- eg s2 vs3 or lumbar v sacral. I went through this for years and even had an unnecessary discectomy. Ideally you can see a TC specialist. I know insurance can be a real barrier to this but it is worth the fight! What state do you live in? There are TC groups on Facebook that offer a wealth of info. You can also start at the Tarlov Cyst Foundation website. Don’t give up - many MDs are unfamiliar or have historically been taught that TCs are unsymptomatic (and some are), but that’s not always true! Especially with the falls that you have had (I had similar and that was the beginning of my journey to understand this disease (tarlov cyst disease). Also there is some scientific literature suggesting that the drain + fibrin glue procedure is not as good as other approaches (again see tarlov cyst foundation)