MARG. B.
I AM WRITING IN REFERENCE TO THE FIRST ARTICLE THAT WAS WRITTEN IN THE AUGUST 28 NEWSLETTER ABOUT RSDS. THIS WAS A MAN WHOMS WIFE HAS RSDS. I HAVE RSDS AS WELL AND HAVE HAD IT NOW FOR 7 YEARS. UNFORTUNATELY I WAS NOT DIAGNOSED UNTIL 18 MONTHS LATER, AND EVEN AFTER THAT LENGTH OF TIME, 4 NERVE BLOCKS AND WHAT WAS CALLED A LOWER LUMBAR DENOVATION AND WITH ONLY SHORT TERM, VERY SLIGHT RELIEF, THAT BECAUSE THESE PROCEDURES DID NOT TAKE ALL OF MY PAIN AWAY THEY WERE NOT SURE IF IT WAS RSDS OR NOT?? I KNEW I HAD MOST OF THE SYMPTOMS THAT WAS LISTED IN THE "HELP STOP THE PAIN BOOKLET" FROM THE RSDS ASSOC. IN N.J.AFTER 5 YEARS I FINALLY FOUND A DOCTOR AT DUKE UNIVERSITY IN N.C. A RECEIVED A DEFINITE RSDS DIAGNOSIS RIGHT AWAY. NEEDLESS TO SAY, I NOW HAVE RSDS THROUGHOUT MY ENTIRE BODY. HOWEVER I WANTED TO RESPOND MOSTLY TO THE RHIZOTOMY, WHICH YOU SAID WAS THE BURNING OF THE TROUBLING NERVES USING A RADIO FREQUENCY PROBE ON THE END OF A NEEDLE. THE DENORVATION THAT WAS PERFORMED ON ME WAS SIMILAR TO THIS, HOWEVER IT WAS USING CHEMICALS TO GO INTO THE NERVE ENDINGS TO BURN THEM TO DESTROY THEM. I TOO WAS TOLD THAT THIS WOULD HELP MY PAIN FOR BETWEEN 6-12 MONTHS, HOWEVER IT COULD AFTER THAT PERIOD OF TIME MAKE THE PAIN WORSE. THIS COULD ONLY BE PERFORMED ONCE DUE TO THE FACT THAT THE NERVE ENDINGS WOULD GROW BACK AFTER THIS PERIOD OF TIME AND IN DIFFERENT DIRECTIONS. THEREFORE THEY WOULD NOT BE ABLE TO PERFORM THIS PROCEDURE MORE THAN ONCE BECAUSE OF NOT KNOWING WHERE THE NERVE ENDINGS WOULD BE ONCE THEY GREW BACK. WELL THIS ONLY LASTED 2-4 WEEKS BEFORE THE PAIN STARTED COMING BACK AND BECAME STRONGER AND STRONGER. THIS WAS THE REASON I WAS TOLD THEY WERE UNSURE OF A RSDS DIAGNOSIS ALTHOGH THE FIRST NERVE BLOCK PROVED IT BY THE GREAT TEMPATURE CHANGE IN MY INJURED FOOT.AFTER I FOUND MY DOCTOR AT DUKE UNIVERSITY, WHOM SPECIALIZES IN RSDS, I WAS TOLD THAT I SHOULD HAVE NEVER HAD ANY OF THESE PROCEDURES DONE DUE TO THE STAGE OF RSDS I WAS IN WHEN THEY PERFORMED THEM. ALSO THAT THIS WAS THE REASON FOR MY PAIN SPREADING THROUGHOUT MY BODY, ALL EXTREMITIES, ETC. THESE TYPES OF PROCEDURES WILL DEADEN THE NERVES FOR A PEROID OF TIME, THEN IT'S LIKE THEY WAKE UP AND WHEN THEY WAKE UP, HE DESCRIBED IT AS THE NERVES COMING BACK WITH A VENGENCE! FOR ME, I AM LIVING PROOF OF THAT AND HAVE TO STRONGLY AGREE WITH HIM BECAUSE IT DID NOT START SPREADING THROUGHOUT UNTIL AFTER THESE PROCEDURES WERE DONE. THEREFORE I STRONGLY URGE YOUR WIFE AND YOU BE VERY CAUSIOUS OF THESE PROCEDURES, BECAUSE THE WAY IT WAS EXPLAINED TO ME, IS THAT FOR MOST PEOPLE WHO SUFFER WITH THIS DISEASE, IT USUALLY CAUSES THE DISEASE TO BECOME WORSE IN THE LONG RUN. SO PLEASE BE VERY CAUSIOUS AND GOD BLESS!! PLEASE FEEL FREE TO CONTACT ME VIA E-MAIL IF YOU OR YOUR WIFE WOULD LIKE TO SHARE YOUR WIFES STORY.