a little update and a question

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
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a little update and a question

Post by hope16_05 »

I started thereapy at my college again a couple weeks ago. Today was my third time going. Anyway we decided that this year we would try and do all sorts of tests to try and figure out which of my nerves are damaged. So today my therapist was doing hot/cold sensation tests on my hand and arm and what we found kinda scares me a little.

When my therapist was doing the testing I had to keep my eyes closed and she was putting the hot thing on my arm to test where I can feel hot, the only problem was that it felt cold to me. Then when she used the cold one that felt cold too. So I can feel but I have a hard time feeling hot. Does any one else have that?

Man is my sensation screwed up! Hot should not be cold, no wonder I burn my arm no matter how careful I try to be. It amazes me what I find out during my therapy sessions. Always something new.

I guess I was just wondering if any one else had sensation stuff like that.

Hugs,
Amy 19 ROBPI from MN
Amy 28 years old ROBPI from MN
Andrea53
Posts: 44
Joined: Tue Jun 17, 2003 2:05 pm

Re: a little update and a question

Post by Andrea53 »

I have a similar problem.My left lower arm and hand have some sensation but it does not feel hot.My hand always have burn marks.The worst is seeing a blister a few hours later.The upside is I can wash dishes in really hot water.lol
Please be careful because not feeling hot,you may burn and also the sight can get infected.
I'm 53 and always had this.Glad you found out so soon and have a wonderful therapist to get those good muscles strong.
God Bless
Andrea
User avatar
hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
Contact:

Re: a little update and a question

Post by hope16_05 »

Thanks Andrea,
I have always been pretty careful because I have no feeling at all in my pinky finger and the bottom of my hand (the ulnar nerve area). So I have to watch what I do very carefully. I just thought it was interesting that I would feel hot as cold and cold as cold. Very weird!

Thanks again,
Amy
Amy 28 years old ROBPI from MN
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marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
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Re: a little update and a question

Post by marieke »

Amy,
Since I got TM my leg is like that too on the right leg. Weird huh? Parts of my left arm feel cold as pain more than just cold.
Marieke (LOBPI)
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
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: a little update and a question

Post by Kath »

Amy
I can't feel hot either on my forearm and parts of my hand,shoulder, neck and face.
My arm feels cold most of the time and if it is cold out my cold arm is in pain.
I have to wrap my arm in something warm when I am just sitting around because it is painful when it gets very cold.

It's crazy but I did not realize how different my both arms were for many years but know my right side was always freezing.
My right leg is colder and thinner.
My PT said my right leg is shorter and my hip higher on the right...
Kath (adult/robpi)
Kath robpi/adult

Kathleen Mallozzi
kamren
Posts: 262
Joined: Sun Feb 15, 2004 7:19 am

Re: a little update and a question

Post by kamren »

I have never notice one way or the other with my BPI arm, but I do know I get sunburned more easily on my left, and that I often have pretty bad bruises that I have no idea where I got them.

I also have numbing on my left pinky and right below my pinky on my hand all the way to the wrist. I never considered that it was BPI related though.
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
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Re: a little update and a question

Post by Carolyn J »

Hi Amy,
I've got hot/cold issues too on my LOBPI side arm, leg and ESPECIALLY left hand. My hand is something I struggle with everytime I go outside in gold weather. I also sunburn sooo easily & quickly on that side.

Hugs & have a good day today,
Carolyn J
Carolyn J
Adult LOBPI
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