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Tarlov Cyst on the spine: Any advice?
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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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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2 Reactions@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
@jenniferhunter I thought there was a proceothey could do to drin the cyst and fill it with fibrin so that it doesn’t fill up again, has anyone heard or had this procedure for tavlov cyst? I also have this cyst which they think may be causing my tightness of the foot.
@joken did you find anyone in Florida to help you with the tavlov cyst? Did they recommend a procedure to aspirate and fill with fibrin? I have a cyst as well and trying to find out if anyone has had this procedure done and whether it was successful.
@panda2ac i finally got to see my neurosurgeon yesterday who reviewed my MRI. He felt that based on the location of the cyst and my symptoms he did not think it’s the cause of my issues. The cyst is on the S2 nerve path but my symptoms lead more to issues caused by S1 nerve path. He is referring me to a neurologist in his practice to see if they can determine what the issue is. So I did some more research and it seems that my symptoms match more to perineal nerve irritation. So while I wait for my appointment with neurologist, I will start doing some exercises for strengthening the peroneal muscle and see if it helps my symptoms.
@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)
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1 ReactionI have noticed many times - acording to my Tarlov cyst -group in Finland - that many times doctors say that Tarlov cyst does not affect on nerves, when the cysts are near the nerves and you can’t show if the cysts affect or not.
@bogobarb
Tarlov cyst's. I was first diagnosed in 2001. Tarlov cysts are similar to fibromyalgia in that doctors are told in medical school they don't cause problems and it's slow and coming that they recognize them. There is a great site. Tarlov cyst foundation that has a lot of great information. Including I think it's four doctors across the country that can actually treat them. Yes they cause problems. Yes they cause pain
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1 Reaction@becky55f sorry my point about them being like fibromyalgia is it took several years for doctors to recognize fibro. Now they're pretty well diagnosed and treated and fibromyalgia will be at some point too. It's just that only 1% get it. Get the cyst so there's no money in treating them as far as medication etc
@becky55f One % of whom?