Hi, Everyone! I've been around since June, I think, but I just found this today, thanks to Jen for bumping this up all the time. I just finished reading ALL 500-something posts...I'm having a slow day here...and I am so impressed with the bravery and determination so many of you display.
I guess I am starting a new catagory here. My tbpi came from the radiation therapy I underwent for breast cancer in 1978. It took over 20 years to develop, on my dominant right side, and it took me years to finally find out what it was. Now that they know, they can't do anything about it. The MRI Neurography scan declared that the nerves in the brachial plexus have been matted together and will most likely continue to matt together.
I didn't think this was so rare, but I see that none of the old "lurkers" here have even heard of it. I will keep searching for other survivors, but in the meantime I want everyone who has responded to me to know how deeply I appreciate it. I have many of the same problems of trying to manage my life with a hand that can no longer hold a pen...did you guys know you can get a stamp with a scrawl on it that is accepted by banks and credit cards?
If anyone knows anything about radiation injury, please feel free to email me. Jen, I live in the Chicago area, and I guess you can put this under medically induced. It was supposed to cure, not damage.
Barbara-
ROLL CALL ( LURKERS TOO!!!!!!! )
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: ROLL CALL ( LURKERS TOO!!!!!!! )
Sorry, all. I thought my email would show up, I put it in, but this new-fangled machinery just doesn't want to be cooperative. Anyway, it's ernestkoehler@comcast.net
Barbara-
Barbara-
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: ROLL CALL ( LURKERS TOO!!!!!!! )
moving this to the top
Thanks to JennyB NZ you have a roll call and some of the numbers crunched.
Kath (robpi/adult)
Thanks to JennyB NZ you have a roll call and some of the numbers crunched.
Kath (robpi/adult)
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: ROLL CALL ( LURKERS TOO!!!!!!! )
Brandon Hubbard here 32 TRBPI from a mountain bike accident. Avulsed C6,7 and T-1. no nerve grafts.
Good Luck to all
Good Luck to all
-
Kianas Dad
- Posts: 29
- Joined: Tue Dec 12, 2006 3:20 pm
Re: ROLL CALL ( LURKERS TOO!!!!!!! )
Kiana Clay, 12 year old female with avulsed c-6, and not sure about the rest yet... motorcycle/mx accident
-
Kianas Dad
- Posts: 29
- Joined: Tue Dec 12, 2006 3:20 pm
Re: ROLL CALL ( LURKERS TOO!!!!!!! )
Sorry forgot to add on my daughters... accident in November '06 in Dallas TX.
-
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: ROLL CALL ( LURKERS TOO!!!!!!! )
Hello all TBPI-ers!
I'm Carolyn Jenkins[Carolyn J] Adult LOBPI,age 68, from Tacoma WA.I found UBPN in 2004 and that was the very 1st time I ever heard a name for my bith injury. It is NEVER to late to learn, huh! Our UBPN Famil;y has opened my world as a Senior-retired "young-un".
HUGS,
Carolyn J
I'm Carolyn Jenkins[Carolyn J] Adult LOBPI,age 68, from Tacoma WA.I found UBPN in 2004 and that was the very 1st time I ever heard a name for my bith injury. It is NEVER to late to learn, huh! Our UBPN Famil;y has opened my world as a Senior-retired "young-un".
HUGS,
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: ROLL CALL ( LURKERS TOO!!!!!!! )
Hey, I thought I did this but it was another 'bump' with a map entry you might want for your daughters report.
Me, I'm RTBPI when a crotchrocket going 120mphr crossed the centerline and hit me head on. I was on my Harley Heritage Softtail doing 40mphr. June 21, 2006, I really miss that bike. My nerve transfer/grafting surgery is scheduled Jan 4th @ Mayo. FYI on your other posts - I went there in November for testing and consult, they said if I waited longer my window of opportunity would close for this kind of surgery. Good luck with your daughter.
Me, I'm RTBPI when a crotchrocket going 120mphr crossed the centerline and hit me head on. I was on my Harley Heritage Softtail doing 40mphr. June 21, 2006, I really miss that bike. My nerve transfer/grafting surgery is scheduled Jan 4th @ Mayo. FYI on your other posts - I went there in November for testing and consult, they said if I waited longer my window of opportunity would close for this kind of surgery. Good luck with your daughter.
-
miserbank0312
- Posts: 13
- Joined: Fri Jan 12, 2007 5:12 pm
Re: ROLL CALL ( LURKERS TOO!!!!!!! )
I have just been diagnosed with stretch BPI caused from a 5 level cervical laminectomy in October. I have a paralyzed right deltoid muscle. Other muscles seem fine. Right arm is definitely weaker. I have appt. w/ Dr. Mackinnon in St. Louis on 1/25 and w/ Dr. Spinner at Mayo on 3/13. Anyone else with similar condition?
Re: ROLL CALL ( LURKERS TOO!!!!!!! )
Hi..I do not know whether I should put myself in the list. I do not have a TBPI. I first checked out this site to help me help the man I love and he has a right TBPI. Met with a motorcycle accident in 2003. All roots avulsed.But he is doing great. He has dealt with the pain and now is out of it and does well professionally. I hope to junp into his life some day!