Hello Sandy
I do not mind you using my or my surgeons details in the slightest. If my experience can help just one person suffering from GPN then I am happy.
Good luck with your letter but I fear what was verbal will probably stay just that.
Be mindful Sandy, they are straying into an area about which they know very little and the reason for this is simple: GPN is very rare. So they may say things about this condition without properly researching the condition and it is this point with which I am at variance, with what you have been told. How can they tell you there is no successful MVD for GPN?
I am living proof they are wrong.
10 years on (almost to the day) and I have no pain. Never did, from the day of my MVD by my courageous surgeon, Mr Martin Hunn, whose name I shall yell from the nearest mountain top.
The Pain attacks I had were so intense, that yes, I feared every saliva swallow would trigger an attack. I know what it is to live(?) like that. Do not hesitate to have an ambulance called when such an attack occurs: your partner will be in no doubt when it happens!
kind regards
Michael
useridsandy said:
HELLO AAIN MICHAEL,
THANK YOU FOR YOUR REPLY.
GREAT HEARING FROM YOU.
THE FACT I NOW HAVE THE NAME AND CONTACT DETAILS OF AT LEAST ONE SURGEON ( yours) AND PERMISSION TO USE HIS AND YOUR NAMES IS WONDERFUL. THANK YOU BOTH SO MUCH.
AFTER ALL THATB HAS BEEN SAID TO ME AT THAT "famous hospital" ABOUT NOT HAVING THE SKILLS, ETC TO DO MVDS OR ELONGATED STYLOID OPS OR NERVE BLOCKS ETC. FOR GN. THAT THEY NEVER WORK ETC. MY LATEST NEWS IS I HAVE RECEIVED A COPY OF A LETTER WHICH ONE OF THE NEUROSURGEONS HAS WRITTEN TO MY GP ( we call the local general doctor we see a GP .It stands for general practitioner).
THE LETTER STATES IN VIEW OF THE FACT I AM MANAGING SO WELL ON SUCH LOW DOSES OF TEGRETOL THEY WILL NOT CONSIDER AN OPERATION FOR ME BUT HAVE DISCHARGED ME , BUT WILL BE PLEASED TO SEE ME AGAIN IF THINGS CHANGE !
THIS LETER IS SO MISLEADING AS IT SEEMS TO IMPLY THE STAFF I SAW CAN DO SUCH OPS WHICH IS TOTALLY AT ODDS TO WHAT WAS SAID TO METIME AND TIME AGAIN.
MY ELDEST DAUGHTER WHO WORKS LOCALLY WITH GPS PRACTICE TOLD ME "THAT LETTER WORDED THAT WAYNSOUNDS GOOD FOR THRM AND COVE S THEIR BACKS" .
THE FACT IT DIES NOT REFLECT WHAT THRY TOLD ME TIME AND AGAIN THERE HAS NEVER BEEN A SUCCESSFUK MVD FOR GN. THST ITS TOO DANGEROUS AN OP TO DO WITH NO CHANCE OF SUCCESS. THST NO ONE HAS THE EXPERIENVE OR SKILLS ETC. AMAZES ME AS IT IMPLIES THEY CAN DO SUCH OPS BUT WONT BECSUSE I AM OK ETC.
I DO NOT EVER WANT TO GO BACK THER. I AM HOPING ONCE I CSN SEE GRANADAMS SURGEON I WILL HAVE AT LEAST HIM OR HIS HOSPITAL (BARTS) TO GO TO IF THE INCREDIBKY TERRIBLE PAINS I HAVE HAD CONTACT ME BACK AND CANNOT BE SWITCHED OFF BY MEDS.
IN FACT I LIVE WITH A FEAR OF THAT ALTHOUGH NO ONE KNOWS IT EEXCEPT MY PARTNER AS I DO NOT SHOW IT OR TALK ABOUT IT BUT ITS THERE. YOU SEE TO HAVE SENSED THAT MICHAEL.
TO HELP OTHERS, I AM THINKING OF WRITING A REPLY TO THAT SURGEON, ASKING HIM TO CLARIFY WHAT HE MEANT AS HIS LETTER IMPLIES HE OR HIS HOSPITAL TEAM ARE ABLE TO DO THE MVDS OR THE OPS. REQUIRED FOR GN SUFFERS . IF HE CONFIRMS WHAT THEY HAVE ALL SAID SO MANY TIMES TO ME, THEN I COULD WRITE TO. THEM AT THAT POINT AND GIVE HIM. YOUR SURGEONS DETAILS. THAT MIGHT MAKE ONE OF HIM AT LEAST AWARE THAT SURGEONS OUT THERE CSN DO SUCCESSFUL MVS FOR GN. WHICH MIGHT HELP ANOTHER GN PERSON IN THE FUTURE.ALTHOUGH WITH THAT TEAM I THINK I MAY BE HOPING FOR TOO MUCH.
IF YOU DO NOT MIMD I WILL SEND YOU A FREINDS REQUEST. I AM ALREADY FRIENDS ON BENS FRIENDS WITH GRANADAM. I AM ON FACEBOOK AS SANDY PIPER.
REGARDS, SANDY