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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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kgrainger | @kgrainger | Jan 26 6:58am
In reply to @joken "The big problem with the medical community and Tarlov cysts is that close to 80% of..." + (show)
@joken

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.

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I have them in every level of the spine. All the doctors say the same thing. Should not be the cause of my pain.

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clucky | @clucky | Feb 27 6:39am

Has anyone been diagnosed with a Tarlov cyst on their lower spine? I would appreciate any information concerning this. Thanks

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1 reply
Sophie46 | @sophie46 | Feb 27 11:58am
In reply to @clucky "Has anyone been diagnosed with a Tarlov cyst on their lower spine? I would appreciate any..." + (show)
@clucky

Has anyone been diagnosed with a Tarlov cyst on their lower spine? I would appreciate any information concerning this. Thanks

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I have been diagnosed with numerous Tarlov Cysts in my sacrum and I also have Adhesive Arachnoiditis. I believe both were caused by my dura being cut during surgery. I had a spinal fluid leak. There is surgery for Tarlov Cysts, but I am too old at seventy eight.

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2 replies
clucky | @clucky | Feb 27 2:00pm
In reply to @sophie46 "I have been diagnosed with numerous Tarlov Cysts in my sacrum and I also have Adhesive..." + (show)
@sophie46

I have been diagnosed with numerous Tarlov Cysts in my sacrum and I also have Adhesive Arachnoiditis. I believe both were caused by my dura being cut during surgery. I had a spinal fluid leak. There is surgery for Tarlov Cysts, but I am too old at seventy eight.

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Thank you for responding. I will be 74 in a few months so I might be too old too!

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danny67 | @danny5 | Mar 2 10:56pm
In reply to @sophie46 "I have been diagnosed with numerous Tarlov Cysts in my sacrum and I also have Adhesive..." + (show)
@sophie46

I have been diagnosed with numerous Tarlov Cysts in my sacrum and I also have Adhesive Arachnoiditis. I believe both were caused by my dura being cut during surgery. I had a spinal fluid leak. There is surgery for Tarlov Cysts, but I am too old at seventy eight.

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i've just been DX with a Tarlov cyst down by the Sacrum or is that down by the tailbone? i was told by a couple surgeons that it would be better to leave it alone. not because of my age of 66. but, it'd be more trouble to fix it than to leave it alone for now. so i guess i will leave it alone temporarily until it causes trouble. 🤷‍♂️

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1 reply
kgrainger | @kgrainger | Mar 3 5:44am
In reply to @danny5 "i've just been DX with a Tarlov cyst down by the Sacrum or is that down..." + (show)
@danny5

i've just been DX with a Tarlov cyst down by the Sacrum or is that down by the tailbone? i was told by a couple surgeons that it would be better to leave it alone. not because of my age of 66. but, it'd be more trouble to fix it than to leave it alone for now. so i guess i will leave it alone temporarily until it causes trouble. 🤷‍♂️

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There are only 2 doctors in the states that do the surgery one in Texas the other in California. There is a couple of FB groups you can join to learn more. I have learned a lot from the groups. There is also a doctor named Forest Tennant that has a found you can learn a lot from him as well.

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