United Brachial Plexus Network, Inc.

HEY BPI FAMILY,AFTER MY SURGERY I WAS ASKED BY ONE OF THE DOCTORS IF I WOULD BE WILLING TO PARTICIPATE IN A RESEARCH STUDY ON TBPI'S,STILL SOMEWHAT GROGGY FROM THE SEDATION AND MORPHINE I SAID "SURE WHY NOT" PLUS THIS DOCTOR WAS KIND OF HOT FROM WHAT I CAN REMEMBER..LOL...ANYWAY I FORGOT ABOUT IT AND SHE CALLED AND LEFT A MESSAGE TO SEE IF I WAS STILL INTERESTED.HAVE ANY OF YOU OUT THERE PARTICIPATED IN ONE OF THESE
"RESEARCH STUDIES"? FROM WHAT I UNDERSTAND IT'S NOT A PAYING GIG..DON'T GET ME WRONG,I'M ALL FOR HELPING FIND A "CURE" FOR THIS INJURY I JUST DON'T WANT TO BE POKED AND PRODDED ON BY SOME PIMPLE FACED MED STUDENTS TRYING TO PASS A MID TERM..LOL...I'M HAVING A HARD ENOUGH TIME AS IT IS WITH THIS...JUST LOOKING FOR SOME FEED BACK BEFORE I MAKE A DECISION.THANKS

WHAT ABOUT INCLUDING ADULTS WITH OBPI'S?????

Carolyn J
LOBPI/72++++

I don't see what it can hurt. I'd ask the doc what all is involved.

What a subject Really, They are doing studies, I am in Aw, That is how they might find a new treatment? Remember the study is a two way street I would make sure that you get the information you need for direction for : how can you get more use in your limitation? What other treatment are out there now for My bpi? BUG DOCTORS all ways!!!! What other treatment for pain our out there??

Hate say it but you maybe our reporter on this study. We older BPI never had studies out there for BPI injuries. BPI to me is like a mountain climb your never seem to get the top yet. I do not believe BPI is permit, nor do I think the words This injury will never get any better Yea right??? The key to Me is things that will strength my limitation in life is base on All goal big and small in trying. The other is new treatment from study, If you ask for a copy of there result you might get more understanding and possible outcomes of other treatment, A study should be a two-way street for sure Fact is nothing is per-mitt , I an others do get adpted to things more with time over a life time. But what treatment in our time was huge Question????????

I know what happen in my life with ERBS, I am In a Time machine bring knowledge to the future? I HOPE

Tom

"ARMSTRONG",
If you are a participant in the study and/or have the contact information can you PLEASE investigate if it would be possible to extend an inclusion of Adult OBPI's? A good number of us have had little to none interventions in our lives. I, myself had minimal interventions and at 72 I show a number of SECONARY INJURIES of variety of physical medical confditions. I also never had an accurate diagnosis until was age 66 in 2006.
Thank You.
Carolyn J
LOBPI/72++++

Hi Armstrong,

Mayo is always running some sort of study, and when I'm there I'm always asked to fill out a lengthly survey about my function, outlook, etc. Probably not the same thing as your study, but I always figure that if it's legit, why not add to the body of knowledge. If it turns out that you get prodded by a bunch of med students, you can always opt out at any time - that is a required option for all scientific studies with human participants. Plus, you might get the hot doctor again

ArmStrong wrote:HEY BPI FAMILY,AFTER MY SURGERY I WAS ASKED BY ONE OF THE DOCTORS IF I WOULD BE WILLING TO PARTICIPATE IN A RESEARCH STUDY ON TBPI'S,STILL SOMEWHAT GROGGY FROM THE SEDATION AND MORPHINE I SAID "SURE WHY NOT" PLUS THIS DOCTOR WAS KIND OF HOT FROM WHAT I CAN REMEMBER..LOL...ANYWAY I FORGOT ABOUT IT AND SHE CALLED AND LEFT A MESSAGE TO SEE IF I WAS STILL INTERESTED.HAVE ANY OF YOU OUT THERE PARTICIPATED IN ONE OF THESE
"RESEARCH STUDIES"? FROM WHAT I UNDERSTAND IT'S NOT A PAYING GIG..DON'T GET ME WRONG,I'M ALL FOR HELPING FIND A "CURE" FOR THIS INJURY I JUST DON'T WANT TO BE POKED AND PRODDED ON BY SOME PIMPLE FACED MED STUDENTS TRYING TO PASS A MID TERM..LOL...I'M HAVING A HARD ENOUGH TIME AS IT IS WITH THIS...JUST LOOKING FOR SOME FEED BACK BEFORE I MAKE A DECISION.THANKS

Armstrong,
What's the study? Who is hosting it (what hospital/doctors)? I'd be interested in checking it out if they're accepting older injuries and the factors where right.

Let us know.

Christopher

I took part in some research study. i flew back to London England where i had my surgery. The tests consisted of electrical tests. Stuck needles into skin and when i was moving my arm the best i could they could see the electrical signals been sent on the monitors. They paid for my flights and accommodation. They said they will get me back again.

When i was leaving hospital after the operation they asked me would i be interested in helping with research, i said yeah no problem. If what they learn from me helps someone else it will have been worth it.

When I went to the Mayo Clinic in March, they mentioned that they were working on a surgery to reduce pain. I honestly think they are close to getting there because he sounded pretty positive. I go back in October, and I would volunteer myself for research if it meant possibly reducing pain and making medical advancements.
What kind of study would they do with you?

Hi Madison,

What type of pain relief were they working on -- the pain from shoulder subluxation or the phantom limb neuropathic kind? And which provider at Mayo told you about it?

I'm asking because Mayo sent me a request for a followup appointment. I haven't gone for a while due to costs getting there, but this could sway the decision.

Thanks!