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
RESEARCH STUDY?
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ArmStrong
- Posts: 100
- Joined: Thu Jan 20, 2011 4:09 am
- Injury Description, Date, extent, surgical intervention etc: HI BPI FAMILY ON SEPT.19 2010 I CRASHED ON MY MOTORCYCLE AND SUFFERD A FRACTURED BACK AND NECK AND A CLOSED,TRAUMATIC BPI LEFT ARM PARALYZED,SOME FINGER AND WRIST MOVEMENT.
- Location: LOS ANGELES,CA
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: RESEARCH STUDY?
WHAT ABOUT INCLUDING ADULTS WITH OBPI'S????? 
Carolyn J
LOBPI/72++++
Carolyn J
LOBPI/72++++
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RobertRacer
- Posts: 137
- Joined: Tue Sep 30, 2008 4:54 pm
- Injury Description, Date, extent, surgical intervention etc: 9/23/07 - LTBPI / Motorcycle collision
- Location: Birmingham, AL
Re: RESEARCH STUDY?
I don't see what it can hurt. I'd ask the doc what all is involved.
Robert - LTBPI/34/AL - Yamaha meets Ford Expedition....not good.
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Master DIVER TOM
- Posts: 759
- Joined: Tue May 05, 2009 11:51 am
Re: RESEARCH STUDY?
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
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
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: RESEARCH STUDY?
"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++++
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++++
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MW
- Posts: 81
- Joined: Fri Jun 19, 2009 6:13 pm
- Injury Description, Date, extent, surgical intervention etc: LTBPI, Feb 2009, hit by truck while on a run. Free muscle transfer at Mayo Clinic 6 months later.
- Location: Chicago, IL
Re: RESEARCH STUDY?
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
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
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Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
Re: RESEARCH STUDY?
Armstrong,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
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
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pieface
- Posts: 21
- Joined: Tue Dec 08, 2009 1:44 pm
- Injury Description, Date, extent, surgical intervention etc: Full root avulsion of C5,C6,C7,C8,T1 September 2009.
Surgery October 2009.
Donor nerve taken from fore arm, sliced into 3 pieces.
Used for C5, C6 , C7 to re implanted back into the spine and attached
to brachial. - Location: Ireland
Re: RESEARCH STUDY?
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 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.
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MadisonB
- Posts: 13
- Joined: Mon Feb 07, 2011 4:50 pm
- Injury Description, Date, extent, surgical intervention etc: During my right shoulder surgery about three months ago three nerves in my arm were stretched causing my Brachial Plexus Palsy. The outer part of my upper arm is numb to touch, as well as the inside of my forearm. This continues up to the palm of my hand to my thumb and pointer finger. I have movement in my hand but that is about it. I am unable to pick up my arm at all. I had the crushing and burning hand for about two months, but now it had dulled out. I am nineteen years old and played volleyball for a college. I went back for my second semester of college but had to medically withdraw. We are now waiting to see if the nerve wakes up, if there are no differences at the end of the month we are going to visit the Mayo Clinic to see what surgical options I might have.
Re: RESEARCH STUDY?
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?
What kind of study would they do with you?
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MW
- Posts: 81
- Joined: Fri Jun 19, 2009 6:13 pm
- Injury Description, Date, extent, surgical intervention etc: LTBPI, Feb 2009, hit by truck while on a run. Free muscle transfer at Mayo Clinic 6 months later.
- Location: Chicago, IL
Re: RESEARCH STUDY?
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!
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!