Barbara
Cat, I know how scared you are. I am 49, diagnosed in 1992 with "the works"...ACM+SM. It is my left side which is most affected although now my right leg has become involved and my right hand. Syrinx was C1-t11. A series of surgeries (3) brought me, finally, to Dr. Thomas Milhorat in Brooklyn NY, and he was a Godsend. Alway honest and willing to spend all the time needed to explain things, he was as encouraging as he could be under the circumstances. As he told me, none of the symptoms were relieved (except the constant headache which sent me to the hospital once a month the summer before that surgery). Some symptoms have gotten worse now. That surgery was in Dec of 1997. Our symptoms sound much the same. The meds make a difference of day and night, life or death...so I hope you have had some luck. The problem is that few doctors have heard of SM, and if they have, don't seem to understand or relate to the PAIN that is involved. Perhaps you can contact Dr. Milhorat before you let anyone else "chisle" on you. It is TOO SCARY to let them continue to hack away at the skull and spine...think about it, hon. And, peace be with YOU. Barb