Aa
Any other "re-do" Chiarians out there?
My daughter will have a second surgery to try to relieve every chiari symptom in the book (and live through it). How many others are going to have to re-do the surgery? If you have already gone throught this twice, any better results? Any recommendations?
Talk about me and I shall return! (Or just be having a semi-decent day where I get on the computer!)
I had a decompression done in Albany, NY on 6-30-06, and a revision by Dr. Insinga at TCI on 5-27-09.
Did I mention that Selma was MY roomate at TCI, and she's awesome!?!
Anyways, since my revision in May, I felt great for about a month or two afterwards and feel as if I have been going downhill ever since then. My biggest concern is that I've been having passing out spells quite often. My most recent spell was I passed out doing wishes, and the boiling hot water over flowed the sink, burning my feet.
I'm not attempting to scare you or anything, but each case is different...I just hope your daughter does much better than I have been doing!
I had a decompression done in Albany, NY on 6-30-06, and a revision by Dr. Insinga at TCI on 5-27-09.
Did I mention that Selma was MY roomate at TCI, and she's awesome!?!
Anyways, since my revision in May, I felt great for about a month or two afterwards and feel as if I have been going downhill ever since then. My biggest concern is that I've been having passing out spells quite often. My most recent spell was I passed out doing wishes, and the boiling hot water over flowed the sink, burning my feet.
I'm not attempting to scare you or anything, but each case is different...I just hope your daughter does much better than I have been doing!
COMMUNITY LEADER
Hi...I know zipperhead0609 ( Janet) had a revision...hers was bcuz the first surgeon left a staple inside and it caused a CSF leak.
She has had a set back after the revision, but she moved to TX in the meantime and has not kept in touch......
I do know there r others , and they r doing well.....it all depends on y the revision is needed....infection, rejection...CSF leak????
Also it depends if the first surgery was the full PDF...there r some less invasive surgeries that may need to be done to go a bit further to help with some symptoms.
Keep in mind this is not a cure, but a way to slow progression...and if nerve damage was done, there is no way to relieve those symptoms.
Make sure u r using a true chiari specialist.....
My best to ur DD
"selma"
She has had a set back after the revision, but she moved to TX in the meantime and has not kept in touch......
I do know there r others , and they r doing well.....it all depends on y the revision is needed....infection, rejection...CSF leak????
Also it depends if the first surgery was the full PDF...there r some less invasive surgeries that may need to be done to go a bit further to help with some symptoms.
Keep in mind this is not a cure, but a way to slow progression...and if nerve damage was done, there is no way to relieve those symptoms.
Make sure u r using a true chiari specialist.....
My best to ur DD
"selma"
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