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Arachnoid Cyst

Spine Health | Last Active: Sep 16 3:35pm | Replies (233)

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@davelt103

Thank you so very much for your reply Dave, I appreciate it very very much and yes I am in excruciating pain on a daily/hourly basis and I am trying to reach out to get help with my situation and you have at least given me an avenue to explore. I was in Rochester, MN for a surgical consult, referred by my pain specialist from St. Paul's Regions hospital, but I missed my appointment because I ended up in the ER @ St. Mary's hospital in Rochester MN, I was admitted and was afforded the opportunity to see one of the Dr.s from neurosurgery (not the one I was scheduled to see) he is not convinced that my pain is from the arachnoid cyst on my spinal cord. (I disagree!!) he wants me to come back in January for an occipital nerve block and trigger point injections. Blah! I have already had both of these procedures numerous times before, they have NOT worked. Plus in January it is very cold here in Minnesota and I live 2 1/2 hours north of Rochester and I DON'T travel well because of the pain associated with bumpy Minnesota winter roads!
So I am going to look up this doctor that you have recommended and see if I can see him instead of this other surgeon that was not confident about trying to do surgery and fenistrate the cyst, which I feel would be the best . But I will not do surgery at all they are going to make me worse than I am, unfortunately I am a quadriplegic I have been for 30 years. The Dr.s in St. Paul they are saying that if they do surgery that I will not be able to swallow again forever!! I can't do that!!

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Replies to "Thank you so very much for your reply Dave, I appreciate it very very much and..."

Hello, it's been over two years since I checked into this site, and I have reread your messages. In this intervening time, how have things gone for you?
I have had an "interesting" time. It became clear that I have an associated condition called Epileptic Transient Amnesia. This is connected to the position of the original cyst on the memory parts of the brain. I don't get full body fits but fits inside the brain only. And I'm completely unaware of them. Over time, it's become clear that I do not have Alzheimer's, or anything similar, but just loss of new memories when one of these epileptic fits occurs. Regular anti-epileptic drugs work to alleviate symptoms, but not totally. I'm still trying to work out how to improve my situation.
If you care, kindly give me an update on your situation,
Best regards,
David