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Tarlov Cyst on the spine: Any advice?
Spine Health | Last Active: Feb 5 8:25am | Replies (167)Comment receiving replies
@joken This is the 1st time I have seen Tarlov Cysts brought up. Wow. I was going to ask if there were any information or if anyone else had a Tarlov cyst or cysts. I have back pain and back issues for years and was also diagnosed with peripheral neuropathy this year with no known reasons
. I am not diabetic. Three months ago I ha another MRI of my back and sine done. Well, there in the written report was Tarlov cyst. This ha not shown up on prior MRI's. When I asked my doctor about it he just said, well actually h didn't say anything and I did not pursue an answer at that time because thee were so many thins going on. Now I hear it talked about on Connect and others have also found they have Tarlov cysts. I did read up on them and it sad they don't USUALLY cause problems, but they can. I couldn't help but wonder if my severe back pain and maybe even neuropathy could be triggered by that cyst and for some reason just now showed up on the MRI. I will be asking more questions when I see the doctor. If something is on or near your spine that should not be would think it could cause problems. I hope more information will be brought up from others here.
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The big problem with the medical community and Tarlov cysts is that close to 80% of folks have them, and they are asymptomatic for them. The few percent of us whose Tarlov cysts are symptomatic are disregarded because very few neuroradiologists have the skill set and expertise to notate on your MRI report the number of cysts, dimensions of each cyst, fluid volume of each cyst, as well as the exact location of each cyst. I just had my pain specialist order a MRI requesting all of that information. I paid $550.00 for it. The report came back with not one of those requests notated. The neuroradiologist argued that the cysts are benign, incidental findings and it was ludicrous to ask in the first place. My doctor called the radiologist and found out he just didn't know how. I was refunded all my money. Now, I'm looking for a neuroradiologist closer to Florida to send the MRI disc to. Perhaps John Hopkins in Jacksonville. I have done hours of research, purchased medical journal articles, etc. in order to become more educated to advocate for myself. Please do not give up. If you do, you've lost. Keep hope alive!
I'll be happy to share what I've learned. Just feel free to ask.