United Brachial Plexus Network, Inc.

Hi Suzie & Kath,

Thanks for caring. I do not have good news. First of all, the nerve test, I had no response to the test in my wrist, hand or fingers. I had a bit of a response on my forearm. My shoulder muscles are working very well. The doc said that in all probability, I won't get my hand back. He said it might take up to 18 months before the nerves regenerte to mt hand and fingers and by that time, it will be too late. He said the nerves will give up in regenerating cause they have too far to grow.

Suzie in David's case, what did his EMG say? Did he have any response? I just won't believe that I won't get my hand back. The nerves are stretched. I don't understand this. I guess I am in denial or really hoping for the best.

I definately do not have a tear. So I am going to try to get into see the BP doc in Toronto sooner than December.

Can someone tell me something good or hopeful? Thanks.

Love, Karen

OH KAREN!!
I AM SO SORRY THIS DOC WAS NOT MORE HOPEFUL---THE ONLY THING THAT I CAN TELL YOU IS THAT DAVID'S REPORT WAS PRETTY MUCH THE SAME--MAYBE NOT SO BLUNT, BUT WE LEFT THERE FEELING LIKE NEWS WAS NOT GOOD--THE EMG GUY SAID HE WOULD COMPILE THE DATA HE GOT FROM THE TEST AND A REPORT WOULD GO TO DR. BELBERG WITHIN A FEW DAYS..."I HOPE WE CAN DO SOMETHING TO HELP YOU"..THAT SOUNDED PRETTY BLEAK TO ME, AND READING THE SYNOPSIS FROM DR BELZBERG LATER, THE HOPE FOR HAND RECOVERY WAS MODERATE AT BEST--THEY WERE TALKING NERVE TRANSPLANT OR GRAPH, NERVE EXPLORATORY SURGERY, ETC---AND HE SAID ALL OF THIS WAS DEPENDANT ON WHAT DAVID GOT BACK IN THE NEXT 1-11/2 YEARS----I STILL THINK IT IS A GOOD SIGN THAT YOU HAVE FEELING IN YOUR HAND--THERE MUST BE SOME INNERVATION THERE----ANYWAY, I WOULD SAY GET TO THIS BPI SPECIALIST ASAP WITH THE RESULTS OF YOUR EMG---FROM EVERYTHING I HAVE RESEARCHED, TIME IS OF THE ESSENCE AND THERE ARE THINGS YOU CAN DO TO KEEP YOUR MUSCLES FROM ATRPOPHYING--LIKE GET A PT WHO SPECIALIZES IN BPI OR EVEN IN JUST HANDS--AND DON'T SETTLE FOR JUST ANYTHING--IF YOU DON'T LIKE WHAT THIS EMG GUY SAYS, GO TO ANOTHER WITH YOUR REPORT FOR A SECOND OPINION!!! YOU KNOW HOW DAVID HAS PROGRESSED--AND THAT WAS AFTER THE EMG STUDY!! HE GOES FOR A REPEAT EMG NEXT WEDNESDAY, 11/5--CAN'T WAIT FOR THE DOC TO SEE HIS PROGRESS!! SO DON'T GIVE UP, OK??? KEEP DOING YOUR EXERCISES LIKE WE TALKED ABOUT, AND BE PROACTIVE MEDICALLY FOR YOURSELF--REMEMBER THE OLD SAYING ABOUT THE SQUEAKY WHEEL GETTING THE GREASE(OR SOMETHING LIKE THAT!!--YOU GET MY POINT THOUGH??)--BE SQUEAKY!!! KEEP IN TOUCH, EMAIL ME IF THERE IS ANYTHING I CAN DO FROM MARYLAND!!
HUGS AND LOVE, SUZIE

Well its good news on your forearm...that should strengthen up. Am too new to injury to give advice on hand but I reckon wait and see what brachial specialist says. have similar injury stretch to upper plexus my shoulders and biceps don't work and am hoping for brachial exploration. Thats where they might be able to help the stretched nerves it get rid of scar tissue etc.etc. I think they can do tendon transfers etc. down the line for wrist and hand grip.

An EMG is not always right they really have to do an exploratory surgery and he is not the BPI specialist. Wait until you see your Dr. and don't give up.

HI!

THANK YOU ALL OF YOU FOR YOUR KIND WORDS AND SUPPORT. I DON'T KNOW WHAT I WOULD HAVE DONE OR HAVE BEEN FEELING IF IT WASN'T FOR YOU KIND AND CARING PEOPLE. I WILL HOPE FOR THE BEST AND KEEP ON DOING WHAT I HAVE BEEN DOING, POOL THERAPY AND EXERCISES, PT, MY OWN EXERCISES WITH PULLEYS AND LOTS OF MASSAGE. I PHONED THE BP'S OFFICE AND I WILL HOPEFULLY GET IN BEFORE DECEMBER. THE SECRETARY IS WORKING ON IT FOR ME. SHE SAID THIS WAS URGENT. SO THT IS GOOD. THERE WAS TALK OF MUSCLE TRANSFER OR NERVE GRAPH SURGERY. WE WILL SEE. I HOPE THE EMG WAS NOT ACCURATE. I SWEAR THAT I HAVE SEEN MY FINGERS MOVE A LITTLE LITTLE LITTLE BIT. UNLESS I AM REALLY LOSING IT. PROBABLY. I AM GOING TO KEEP ON TRYING TO MOVE MT WRIST, ELBOW AND HAND AND FINGERS STILL. MIND OVER MATTER. AGAIN, THANK YOU.
LOVE, KAREN
IF YOU HAVE ANY OTHER ADVISE, PLEASE GIVE IT. SUZIE, WAS DAVID COMPLETELY PARALYZED FROM THE ELBOW DOWN? AND HIS EMG CAME BACK AS SEVERELY DAMAGED NERVES? JUST WONDERING.

YES KAREN, DAVID'S INITIAL INJURY WAS FROM ABOVE ELBOW TO HIS FINGERTIPS--ELBOW CAME BACK AFTER ABOUT 2 WEEKS, BUT VERY WEAK--FEELING CAME BACK SLOWLY BUT VERY DELAYED IN HIS HAND AFTER ABOUT A MONTH I THINK--NO MOVEMENT FROM JUST ABOVE WRIST TO FINGERS UNTIL ABOUT A WEEK AFTER THE EMG--THEN JUST EVER SO SLIGHTLY--JUST LIKE YOU'RE MAYBE SEEING IN YOUR FINGERS????? IHOPE-IHOPE-IHOPE!!!! PROCEDED TO TAKE BABYSTEPS IN MOVEMENT FROM THEN ON TO WHERE WE ARE TODAY! THE EXACT WORDS FROM THE EMG GUY AND THE BPI GUY WERE "A VERY SEVERE STRETCH INJURY"---HOW IS YOUR PAIN THIS EVENING AFTER THAT EMG?? DAVID REALLY HURT PRETTY GOOD FOR A FEW DAYS AFTER, SO DON'T BE SURPRISED AT THAT-----KEEP ON WITH YOUR GOOD EXERCISES, AND THINK MOVEMENT!! WILL BE THINKING OF YOU BUNCHES---MUCH LOVE YOUR WAY!! ~~~SUZIE

Hi Suzie,

Yes. I am having excrutiating pain tonight in my hand only. I don't usually even get pain. I am feeling a lot of movement inside my hand. It feels like there are worms crawling around in there and my bones hurt like h@ll. I guess my recovery is a lot slower than David's. It will be 9 weeks on Sunday since my injury. Oh well, every recovery is different. I am not going to think the worst. I was thinking positively before and I still will. Thanks again Suzie. Talk to you soon. Love, Karen

Suzie

Did David get everything back then. How long ago was his injury. And how long from his initial movement after EMG to good movement.
Karen, that pain especially that crawling feeling may be a good sign as I get that in my right deltoid which is improving all the time.

HI Aurelia and Karen!

Yes, David is improving all of the time--nothing short of miraculous, and dogged determination on both of our parts--I agree with you Aurelia, that crawly feeling may be a really good sign Karen!! That is exactly what David experienced after his EMG, and tht's when true movement started--about a week later--ever so slightly at first--almost imperceivable, but we just kept working it and today--almost 4 months post injury--he has hand and finger motion--everything is pretty weak, but THERE!! He experiences that crawly, nasty feelng and increased pain(which he never had a ton of) and then some new movement or feeling showed up a few days later--seemed to go in cycles--hope this helps as some encouragement--will let you all know how his 2nd EMG does this Wednesday!! Gotta run and go see some patients--my work day!!
Take care- your way!!~~~Suzie~~~

Hi Suzie and Aurelia:

The pain in my hand has been terrible since the EMG. I didn't hardly ever had any pain before Friday. Since then, It has been awful. I wasn't on any pain killers but I certainly could use them now. I am not going to though cause I want to feel exactly what is going on with my body. My hand feels like it weighs 100 lbs. It is such a heavy feeling.

If this is the sign of something good to happen, like movement, how can it move if there were no signals from the EMG? Isen't the movement created from the nerves?

Well I am going to go for a swim. The pain is too much to handle right now. I need to keep busy. Thanks guys. Have a good day. Love, Karen