New Video and New Study needs Adult OBPI's
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kissygoose
Re: IMPORTANT!!!! New Video and New Study needs Adult OBPI's
I'd be interested in taking part in this study though going to the Mayo Clinic and Florida are out for me. If something is arrainged for the Cleveland, Pittsburgh, Philidelphia or etc. areas, however, I would probably be able to attend.
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AngelaW
- Posts: 240
- Joined: Fri Feb 27, 2009 9:03 pm
- Injury Description, Date, extent, surgical intervention etc: X
Re: IMPORTANT!!!! New Video and New Study needs Adult OBPI's
Excellent. Please email me at the address I listed in the primary post so i can keep you updated in the schreduling info. i'm working on getting the first round scheduled this coming week. Yay! 
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rachelcasa
- Posts: 729
- Joined: Mon Apr 21, 2003 11:45 pm
Re: IMPORTANT!!!! New Video and New Study needs Adult OBPI's
It sounds like a great study but I am in Montana and of course the cost would be an issue..I am curious as to how this turns out and thanks for posting it on here.
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karategirl1kyu
- Posts: 363
- Joined: Mon Feb 19, 2007 12:59 am
- Injury Description, Date, extent, surgical intervention etc: LOBPI, had surgery when I was 9- they moved muscles and tendons from one side of my arm to the other side. I can lift my arm to about my eye level, can't straigten it all the way and can't completely supinate my wrist.
- Location: Richmond, RI
Re: IMPORTANT!!!! New Video and New Study needs Adult OBPI's
do we know whats going on yet with the new york meeting? 
im curious and excited!!
im curious and excited!!~Mel/23/LOBPI
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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: IMPORTANT!!!! New Video and New Study needs Adult OBPI's
BUMPING UP FOR New OBPI-ers to UBPN.
Carolyn J
LOBPI/73+
Carolyn J
LOBPI/73+
Re: IMPORTANT!!!! New Video and New Study needs Adult OBPI's
Hi everyone, Im Evan Johnson, 21 LOBPI. I havent gotten on here in a long time and just happened to stop in and see what was new on the forums. I was so surprised and pleased to see the post about this study at the top of the forum. Dr. Elhassen did a total shoulder reconstruction for me when I was nineteen years old. So I too am just 2 years post op. He did 4 muscle transfers, 4 tendon transfers, and a bone graft. Two years and two months ago I only had 20 percent range of motion. Since the surgery I have upwards of 80 percent. The surgery did not do anything for the considerable amount of nerve pain but I cannot stress how much he did for my range of motion. I use my arm so much more. I feel like Im seeing colors that I didn't know existed. I can even throw a damn solid punch with my bpi arm. He restored almost all of the potential function to my shoulder. Now its just up to me to work through the pain. I have damage to c5,6,7,8 and T1, and 2. If Dr. Elhassen can do this for me, he can do it for anyone. I hope I can encourage anyone in doubt to take the chance and at least let the man have a look. He is cross trained as an orthopedic and nuero surgeon. God Bless and good luck to all of my pseudo-brothers and sisters in injury.
-Evan
-Evan
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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: IMPORTANT!!!! New Video and New Study needs Adult OBPI's
Bumping up for Steve???Numbers didn't retain...LOL... 
Carolyn J
LOBPI/73+
Carolyn J
LOBPI/73+
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jodiehodge
- Posts: 4
- Joined: Wed Feb 15, 2012 12:38 pm
- Injury Description, Date, extent, surgical intervention etc: 02/15/2012-LOBPI
Re: IMPORTANT!!!! New Video and New Study needs Adult OBPI's
Hello All, I have been a member of UBPN for a long time but never made a post. To make a long story short...(as so many others also do 
) I was born with a LOBPI. I have had no surgeries ever or any other treatment outside of physical therapy I received as an infant. Every doctor/surgeon (none were BPI specialist) that I went to as a child and an adult in the Washington DC Metro area told me that anything could ever be done in my situation and I should be grateful with the ROM that I have. In my heart, I always felt something should and could be done. And now at the ripe old age of 34 years, I am experiencing more pain and discomfort. In turn, after reading about Dr. Elhassan's research that Angela posted, I contacted him and asked to meet. I had the awesome experience meeting this man who knew every trick in the book I used to hide my BPI but most importantly he was empathetic and willing to help listen and help me. He presented me with 'options' that no other doctor ever did before. Over the years my ROM and pain has increased. My shoulder is absolutely dislocated amoung other things. He is recommending that I have a total shoulder reconstructive surgery and elbow flexion extension (afterwards). I really want the surgery but I am so scared. I don't want to lose the ROM and any function that I have now. After reading Angela's posts as well as Evan Johnson's postings, I feel so positive about the potential possibilities of what I may be able to do with my arm in the future. Still, unlike many of the postings I have read, everyone had some surgery prior to having a shoulder reconstruction with muscle tendon transfers. Is there anyone who never had any surgery and is now getting surgery for the first time from a BPI specialist??? Also I would love to talk to Evan or Angela, or anyone else that has gone through any treatment or surgeries with Dr. Elhassan. I really want to get an idea of their experience. Thanks for listening Jodie LOBPI 34years
) I was born with a LOBPI. I have had no surgeries ever or any other treatment outside of physical therapy I received as an infant. Every doctor/surgeon (none were BPI specialist) that I went to as a child and an adult in the Washington DC Metro area told me that anything could ever be done in my situation and I should be grateful with the ROM that I have. In my heart, I always felt something should and could be done. And now at the ripe old age of 34 years, I am experiencing more pain and discomfort. In turn, after reading about Dr. Elhassan's research that Angela posted, I contacted him and asked to meet. I had the awesome experience meeting this man who knew every trick in the book I used to hide my BPI but most importantly he was empathetic and willing to help listen and help me. He presented me with 'options' that no other doctor ever did before. Over the years my ROM and pain has increased. My shoulder is absolutely dislocated amoung other things. He is recommending that I have a total shoulder reconstructive surgery and elbow flexion extension (afterwards). I really want the surgery but I am so scared. I don't want to lose the ROM and any function that I have now. After reading Angela's posts as well as Evan Johnson's postings, I feel so positive about the potential possibilities of what I may be able to do with my arm in the future. Still, unlike many of the postings I have read, everyone had some surgery prior to having a shoulder reconstruction with muscle tendon transfers. Is there anyone who never had any surgery and is now getting surgery for the first time from a BPI specialist??? Also I would love to talk to Evan or Angela, or anyone else that has gone through any treatment or surgeries with Dr. Elhassan. I really want to get an idea of their experience. Thanks for listening Jodie LOBPI 34years -
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: IMPORTANT!!!! New Video and New Study needs Adult OBPI's
Calling TINA!!
Carolyn J
LOBPI/73+++
Carolyn J
LOBPI/73+++
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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: IMPORTANT!!!! New Video and New Study needs Adult OBPI's
BUMPING UP for newcomers to UBPN. Welcome! & please contact this Mayo Study.
Carolyn J
LOBPI/74
Carolyn J
LOBPI/74