Aa
I just watch this...
http://www.chiaritvspecial.com/chiarivideo.html
Ditto to that selma
IMNSHO I really would like to see a Dr or group of Drs take this seriously. If they did and could work together on 'caring' enough about the victims of CM rather than the money perhaps we'd see some progress.
At the same time as much as I hate to admit it even to myself. I can understand why so many either don't get it or don't want to admit they understand. They symptoms are really very strange, weird and numbered that it would be very easy for them to misdx. Which of course would to an extent effect/affect their livelihood. Wouldn't it be nice if we could live in a world without Litigation? Then some of these doctors who 'do' care could stick their necks out and truly search for answers that would offer real help
CW.
IMNSHO I really would like to see a Dr or group of Drs take this seriously. If they did and could work together on 'caring' enough about the victims of CM rather than the money perhaps we'd see some progress.
At the same time as much as I hate to admit it even to myself. I can understand why so many either don't get it or don't want to admit they understand. They symptoms are really very strange, weird and numbered that it would be very easy for them to misdx. Which of course would to an extent effect/affect their livelihood. Wouldn't it be nice if we could live in a world without Litigation? Then some of these doctors who 'do' care could stick their necks out and truly search for answers that would offer real help
CW.
COMMUNITY LEADER
Have to agree with u there as I heard a few stories where the NS found issues that they had no idea they would find as it did not show on the MRI....
I feel there needs to be big changes not only in how we r dx'd but post op care needs to be figured in and right now is non existent....
JMHO
Wow.... interesting journey. Not sure of the correct word, journey just does not seem to cover life history of many similar case other chiarians have had to live.
There seem to be so many inner connected symptoms that frankly I feel some doctors just give up because they would rather say you are fine than say "I can't figure it out".
As selma so aptely points out though, we don't know how she is now. Like me, the second day after surgery I would have swore the battle is over and it'll be all down hill from here. I was at that moment pain free, symptom free .... yeah wish that would have lasted. :-) None the less though it is way better than pre-surgery.
One thing in the video really interested me. The fact that even the Chiari Docs didn't catch the CM on the MRI. With me, they rated the CM much lower on the causality than they rated the AC. Then when the NS went in that changed. They said after the fact that if they hadn't went in I could have not lived to see another day. Between the AC and the CM there was enough pressure on the Brain Stem he was uncertian how I had made it. So he apologized [at that point] for having missed the severity on the MRI.
I thought up until now that perhaps mine was a fluke. But now with this video it makes one wonder how many times we are mis-dx because the MRI doesn't show it all??? dunno just pondering
CW
There seem to be so many inner connected symptoms that frankly I feel some doctors just give up because they would rather say you are fine than say "I can't figure it out".
As selma so aptely points out though, we don't know how she is now. Like me, the second day after surgery I would have swore the battle is over and it'll be all down hill from here. I was at that moment pain free, symptom free .... yeah wish that would have lasted. :-) None the less though it is way better than pre-surgery.
One thing in the video really interested me. The fact that even the Chiari Docs didn't catch the CM on the MRI. With me, they rated the CM much lower on the causality than they rated the AC. Then when the NS went in that changed. They said after the fact that if they hadn't went in I could have not lived to see another day. Between the AC and the CM there was enough pressure on the Brain Stem he was uncertian how I had made it. So he apologized [at that point] for having missed the severity on the MRI.
I thought up until now that perhaps mine was a fluke. But now with this video it makes one wonder how many times we are mis-dx because the MRI doesn't show it all??? dunno just pondering
CW
COMMUNITY LEADER
I have always said more of us have had symptoms longer then we realize....I know I had symptoms since I was very young, and was also told I had fibro, but my chiari NS and NL said I did not that it was EDS......
The problem is we can not expect to have a recovery like hers, plus we have no idea how she is doing now......
I was like wow!!!! I have had Chiari symptoms since I was a child to!!!! But never knew it because it was just mild! I hope that if I get surgery it's going to help me like it helped her. I feel like Crap today.
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