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Hi I am suffering at the exact same thing as gravey to every detail.I have severe pain in my rite buttock which makes it difficult to sit,walk,stand anything.Every morning I can barely get out of bed.After pain meds I can usually function for awhile.The pain is unbearable.And no one has been able to help me.I have had MRI and X-rays,physio,etc no one has helped they says they can’t find anything.The excruciating pain wouldn’t be there if it was nothing everyday.
Thanks
Annette
Replies to "Hi I am suffering at the exact same thing as gravey to every detail.I have severe..."
Request your medical records and read through all of your imaging reports in the lumbar and sacral areas. See if there is any mention of Tarlov cysts also called perineural cysts. I have multiple Tarlov cysts and they are causing cauda equina syndrome. Look up The Tarlov Cyst Foundation.
I know this thread is a bit old but have any of you had your MRI discs checked for tarlov or sacral nerve root cysts?
Many of you have the telltale symptoms of this disease.
It’s a rare and highly misunderstood disease that radiologist ignore and highly underreport on diagnostic reports.
I’ll attach a picture of mine.
They are debilitating and extremely painful. They cause symptoms similar to a herniated disc. They are usually found in the sacrum.
Good luck to you
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@annette50 I have recently been diagnosed with symptomatic Tarlov sacral cysts. They are a type of spinal cyst. Specifically, These are also sometimes called perineural cysts or sacral nerve root cysts They are dilations of the nerve root sheaths and are abnormal sacs filled with cerebrospinal fluid that can cause a progressively painful radiculopathy (nerve pain). They are located most prevalently at the S2, S3 level of the sacrum. The sacrum is a fused triangle-shaped bone comprised of the five sacral vertebrae forming the base of the spine. The five lumbar vertebrae are located just above the sacrum, and the four coccygeal vertebrae are just below the sacrum forming the coccyx or tailbone.
If you do not already have a copy of your MRI reading -- I would obtain that. See if it mentions Tarlov or perineural cyst. They are often underreported and poorly understood by much of the medical community. If there is no mention on the reading -- you can ask your radiologist to re-review the MRI and specifically ask if there are any Tarlov cysts present. Many radiologists were taught that a Tarlov cyst is a clinically insignificant finding. For many people that is the case. About 5% of the population do have asymptomatic cysts of this type. Only 1% of us have symptomatic Tarlov cysts. An excellent source of information to learn more about symptoms is: https://www.tarlovcystfoundation.org/faqs/