I was diagnosed in January with having CM1 (6mm herniation) and the list of sympotoms that I had then as compared to now is intimidating. Whereas in January my biggest issues were "brain fog", dizzy spells, warmness and tingling on right side of face,... over the course of the last four months I have become extremely hyper-sensitive to light and sound.I have also had to wear a heart monitor for 21 days (24/7) because she wants to make sure that what's going on in my head is not effecting my heart. However,...on top of all this,... I seem to have come down with bronchitis, which cause laryngitis on top of it, and am now on my 10th day of trying to recover from that! Since there has been no improvement with the respitory issue, they took a CT of my chest on Friday, and we're waiting for those results. Bottom line,...with the growing list of CM1 symptoms, and NOW adding bronchitis and larygitis to "the list" this is b y far the socket I have ever been in my life right now.
I attended a Chiari support group meeting in Reading, PA, which was very helpful,...just to confirm that I wasn't going crazy, if nothing else. However, all but one that attended had the decompression surgery, and there was a wide variety of results from the procedure. I look online and see the stats that only about 50% of those who go through the surgery actually experience any relief from their symptoms,, and as a rookie at this,...that sounds like terrible odds to risk such an evasive surgery.
Right now, my "battle plan" is:
1. See a CM specialist in NJ on May 4 to go over the MRI results I had back in January. There are apparently NO CM experts in Central, PA (for adults) which is where I live. Although Hershey Medical has a good rep for PEDIATRIC CM patients,.... at the support group meeting, no one could recommend that I go to Hershey for this as a 55 yr-old male w/CM1.
2. Apply to get an appointment at the Chiari Institute in NY for a full evaluation.
3. Attend the CM convention in Arlington, VA this July to become more informed.
So now,... my question is,...what are the risks of my NOT having the decompression surgery done? Is there any truth to the risk of paralysis if I do't have the surgery? I'm realy feeling stuck netween a rock and a hard place.
Thoughts anyone?
-Brad Hawkins
Landisville, PA