I have been struggling with excruciating back pain again, it is the reason for my recent absences. It has gotten so bad, I went over the last MRI reports,seeking a better understanding. One thing I noticed that were never really addressed were perineural and tarlov cysts.
These cysts are comprised of spinal fluid, due to tears in the 3 layered sheath that protects it. They are located at the root of the spinal nerve. One is mid back, one lumbar and one on the sacrum. And the one on the sacrum, is the worst, I think.
They believe these are caused by extreme trauma, epidurals and Sjogren's syndrome is one of the connective tissue diseases listed. So I have all three possible causes.
These are rarer than rare, and there are only about 7 neurosurgeons in the entire world who deal with them, and 2 possible procedures. The most recommended is aspiration and glue, where they suck the spinal fluid out and fill the cyst with glue. Problem is they always come back, perhaps not in the same place. the other option is to operate, and there are 3 neurosurgeons in the world for this. There is a Dr who has offices in TX, KS and the Isle of Cypress. He claims to be able to remove the cysts and repair the spine so that there are no more leaks. My husband and I are thinking that the co-pay on that would most likely be more than all of our assets!
So first thing is a more recent MRI, as the last was a year and a half ago, then get in to see my Doctors choice. Luckily there are 2 who do the aspiration and glue withing 70 miles of me, one at Hopkins, one at St Lukes. He seemed to like the credentials of the one at Hopkins.
Because these are rarer than rare, I printed off all info I could find on this for my Internist, as it is my understanding that these are barely mentioned in med school, and even neruosurgeons know just enough about them to run at the mere mention of them!
My Doc told me today that he always attributed this kind of crushing pain to the place my spine that is 'disconnected', and the worsening spinal stenosis. That these alone can be a good reason, but we needed to address the cysts.
I hope this can happen soon as the pain and the pressure are just about beyond endurance.
It was time I let you know why I have sometimes not been here for days, it is not that I'm losing interest, and certainly not because I don't care!
I'm not saying goodbye, just letting you know what's up, in case I'm not able to be here. So please keep the group going, please don't let it go stagnant again. Please start posting more discussions. This group is worth having and worth keeping!
Wishing you all well,