Hi Everyone,
I'm new to the forum and I am so excited to get involved! My name is Caitlin and I'm a 19 year old college student.
I was born with a BPI to my right arm, and my story is probably similar to most of yours. I was in and out of PT and OT starting at the age of two. I've never had any surgeries because at the time of my diagnosis, my parents didn't know what the options were and things were considered "experimental". They opted to take the more conservative route, but I'm grateful for the progress I've made over the years that has allowed me to live a pretty normal life.
My BPI has never really been an issue with pain or unusual sensations. However, a few years ago, I began to experience numbness and tingling in my arm. The tingling/numbness can last for various lengths of time and occur randomly during the day. These sensations have continued, and I can't seem to find an answer. I've gone to the University of Michigan BP Clinic, returned to PT, had nerve tests, MRIs, etc, and no one seems to be able to offer any ideas or suggestions for the cause of these new sensations.
I was wondering if any of you have numbness/tingling/other sensations in your BPI arm? If so, what do you do to alleviate the feelings? The only option I was given was to wear a wrist splint because they think my "floppy" wrist could be cutting off circulation which causes the sensations ( sort of a carpal tunnel diagnosis).
I'd love to hear what any of you have to say and I'm so excited to get more involved!
-Caitlin
Unusual sensations
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cnmoffitt413
- Posts: 7
- Joined: Fri Sep 10, 2010 12:24 am
- Injury Description, Date, extent, surgical intervention etc: My name is Caitlin, I'm a 19 year old college student that was born with an OBPI/Erb's Palsy. I've been involved with the University of Michigan Brachial Plexus Clinic. I have never had surgery or any interventions because at the time of my injury, most options were considered experimental. My parents took the more conservative route advised by neurologists and I was placed in intensive PT and OT starting at 2 weeks of age, which allowed me to gain limited range of motion and function.
- Location: Logan, Utah,
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jmar
- Posts: 528
- Joined: Tue Aug 10, 2010 3:43 pm
- Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.
Re: Unusual sensations
have you ever heard of thoracic outlet syndrome (TOS)? sounds similar to what i went through with TOS. it is where the nerve and circulation are being blocked when you hold or use your arm in a certain way. it could be an extra rib at the top, or some unknown reason. but since you have an injured arm anyway, it could be from that. if you dont know about this let me know and i can explain it better
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Jennifer P
- Posts: 220
- Joined: Wed Sep 09, 2009 7:12 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
- Location: Pacific Northwest
Re: Unusual sensations
Sometimes when I wake up in the morning I have tingling in my thumb and index finger. It's been that way as long as I can remember and happens randomly (when I was a kid I thought it was normal!). It goes away for me after at least 30 minutes or so and "tickled" more so than "hurt" so I never really bothered to try to find a way to prevent/stop it.
All in all jmar is probably right that it has something to do with circulation. I'd suggest finding some gentle stretches to do to help keep your circulation as best as possible. If you are seeing a PT I'd ask them for some stretches to help with it.
Also do you know about UBPN Camp??
http://ubpn.org/index.php?option=com_co ... Itemid=128
It's coming up soon, would love to see you there!
All in all jmar is probably right that it has something to do with circulation. I'd suggest finding some gentle stretches to do to help keep your circulation as best as possible. If you are seeing a PT I'd ask them for some stretches to help with it.
Also do you know about UBPN Camp??
http://ubpn.org/index.php?option=com_co ... Itemid=128
It's coming up soon, would love to see you there!
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jmar
- Posts: 528
- Joined: Tue Aug 10, 2010 3:43 pm
- Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.
Re: Unusual sensations
the thorcic outlet is the area between the collar bone and the ribs. this area has to be big enough to carry the nerve bundle and the arteries to the arm and hand. sometimes the muscle mass is too large or there is an extra rib causing this area to be too small and causes numbness and tingling in the hand and arm. I had extra ribs that were very large and excessive muscle mass.(just wish these muscles could be stronger). stretching excercises have to be done very carefully. TOS is very controversial. some doctors do not acknowledge it and it is misdiagnosed a lot.
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cnmoffitt413
- Posts: 7
- Joined: Fri Sep 10, 2010 12:24 am
- Injury Description, Date, extent, surgical intervention etc: My name is Caitlin, I'm a 19 year old college student that was born with an OBPI/Erb's Palsy. I've been involved with the University of Michigan Brachial Plexus Clinic. I have never had surgery or any interventions because at the time of my injury, most options were considered experimental. My parents took the more conservative route advised by neurologists and I was placed in intensive PT and OT starting at 2 weeks of age, which allowed me to gain limited range of motion and function.
- Location: Logan, Utah,
Re: Unusual sensations
I have not heard about TOS, but now that you've brought it to my attention, I'm going to look into it more. Thanks for the suggestion!
Since I'm in school right now, I do not think I'll be able to make it to the UBPN camp. I read all the info on it and it looks like it would be such a neat experience! A year ago I went to the University of Michigan's BP Camp and was actually the keynote speaker. It wasn't as big of a production as the UBPN camp but it was still such a life changing and neat experience. I really wish I could make it to the UBPN camp though. I can't wait to hear all about it!
Since I'm in school right now, I do not think I'll be able to make it to the UBPN camp. I read all the info on it and it looks like it would be such a neat experience! A year ago I went to the University of Michigan's BP Camp and was actually the keynote speaker. It wasn't as big of a production as the UBPN camp but it was still such a life changing and neat experience. I really wish I could make it to the UBPN camp though. I can't wait to hear all about it!
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emilyalberger
- Posts: 51
- Joined: Tue Mar 29, 2011 5:53 am
- Injury Description, Date, extent, surgical intervention etc: left arm bpi since birth,can only bend my elbow mostly ne feeling n when i get it its not the right sensation
Re: Unusual sensations
does anyone else have random poping in there chest? like when i straighten my spine it feels like the top of my boob poped lol
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Jennifer P
- Posts: 220
- Joined: Wed Sep 09, 2009 7:12 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
- Location: Pacific Northwest
Re: Unusual sensations
I get that too. It's your sternum popping. I have OBPI, and when I was born they broke my collarbone to help deliver me. The collarbone is connected to the sternum, and I think that is why my sternum makes the occasional "pop" today.
If it's just a pop sound, like when people crack their knuckles, then it's probably nothing to worry about. If it hurts or is bothering you though, you might want to see a medical professional about it.
If it's just a pop sound, like when people crack their knuckles, then it's probably nothing to worry about. If it hurts or is bothering you though, you might want to see a medical professional about it.
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jmar
- Posts: 528
- Joined: Tue Aug 10, 2010 3:43 pm
- Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.
Re: Unusual sensations
i have an unusual? sensation in my arm when it is touched. any where from my wrist to my mid upper arm. it feels like an electrical impulse that feels like my entire arm is exploding. is this something that is common? or if it is rubbed it really drives me up the wall.
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emilyalberger
- Posts: 51
- Joined: Tue Mar 29, 2011 5:53 am
- Injury Description, Date, extent, surgical intervention etc: left arm bpi since birth,can only bend my elbow mostly ne feeling n when i get it its not the right sensation
Re: Unusual sensations
yup i just get different feelings randomly though
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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: Unusual sensations
YES,Joyce, these are "BPI "thingys" 
((((HUGGZ))))) for Ya,
Carolyn J
LOBPI/72++++
((((HUGGZ))))) for Ya,
Carolyn J
LOBPI/72++++