OBPIs who haven't had surgery

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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cdmurfee
Posts: 113
Joined: Mon Feb 23, 2009 2:12 am

Re: OBPIs who haven't had surgery

Post by cdmurfee »

I've never had surgery either. Not even physical therapy. I only just started to understand what Erb's Palsy entailed earlier this year, other than the first hand experience of my left arm doesn't work like my right arm. I feel that not having fully understood what BPI was, I was extra determined to work out my left arm to get it as up to par as my right arm as I could. It's definitely not the anywhere near the same, but I do feel I'm better off for it now. I have also been thinking about going to a real physical therapist recently, just have to figure out the finances.

Chris 24/LOBPI
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: OBPIs who haven't had surgery

Post by Carolyn J »

I do EVERYTHING recommended by others on this Board and the TBPI message Board for pain now from over-use and artheritis: Hot Tub for 15 mins doing slooooow EASY stretches and WARM WATER pool gentle slooow exercizes/stretches, massage, & Chiroprater[Don't have $ or coverage at present]

Carolyn J
LOBPI/71
Carolyn J
Adult LOBPI
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: OBPIs who haven't had surgery

Post by Kath »

I've never had surgery and have had PT ever since I can remember. When I was young it was done at home and many normal household functions were used as therapy were used.

I go to a chiropractor (got my hand to neutral at about 50 years of age.) I have used massage therapy for pain and it helped. I have had formal therapy so many sessions using ART (active release therapy). I get monthly B-12 shots and have gotten them since my early teens. When I stop the shots I get sharp spasms in my upper arm. I actually loose my breath because they are so sharp. I don't know why the shots work but they calm my nervous system and I don't get the pains. I stopped for many years on and off but always went back to them because I hate those spasms.

I used the hot tub for many years and it really helped with my back, neck and gave me a place to do ROM in warm water. The water we need to work out in should be warmer than 87 degrees, I prefer 90 degrees.

Most of all you should be doing your ROM on a daily basis to keep your arm stretched and moving.

Kath robpi/adult
Kath robpi/adult

Kathleen Mallozzi
Jennifer P
Posts: 220
Joined: Wed Sep 09, 2009 7:12 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
Location: Pacific Northwest

Re: OBPIs who haven't had surgery

Post by Jennifer P »

I am like many of you who have posted so far. I've never seen a doctor about my arm, aside from a couple of months after birth. I really don't know what do as far as talking to my doctor. Occasionally I have pain, but I usually just apply some icy hot or even just take a break and relax my arm. It's quite frustrating at times.

I've never heard about getting into a hot tub. I don't really have access to one, but I assume a hot bath would work pretty well too; especially with some added epsom salt :)
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: OBPIs who haven't had surgery

Post by Kath »

Jennifer
Nice to meet you.
One of the things that really helps to keep from getting so tight all the time is stretching. If you stretch after a shower it will really help. I often lay down on the floor to get a good ROM (range of motion). The bath will really help but doing a little ROM on a daily bases my also help to ease some of the pain. Remember your muscles must be warm to stretch them.

Glad you found us. It's important for you to know that when we were new here most of us knew very little about our injury. Read the information pages and educate your self about bpi. Most doctors have very little information regarding this injury and it's long term effects.
Kath robpi/adult

Kathleen Mallozzi
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: OBPIs who haven't had surgery

Post by Carolyn J »

Good news, Tina.
KEEP ON KEEPING ON!!

Nice to "meet" you, Jennifer P. :) Please come back more often. We learn from one another...FYI...Fitness Centers/Clubs have hot t tubs/jacuzzi's...YMCA's do too.

HUGS,
Carolyn J
LOBPI adult
Carolyn J
Adult LOBPI
Jennifer P
Posts: 220
Joined: Wed Sep 09, 2009 7:12 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
Location: Pacific Northwest

Re: OBPIs who haven't had surgery

Post by Jennifer P »

I'm not really new...been on these forums for a little while under alias "Concentrate". I went to UBPN Camp back in...i dunno...2000, 2001?

I know a lot about the injury too...but always learning.
Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

Re: OBPIs who haven't had surgery

Post by Judy-T »

I never had surgery until I was 40. I had an ulnar nerve retransposition to regain some feeling in my ring finger. A couple of years later I had to have medial nerve surgery on my good arm for overuse. As a child my mother would drive me to therapy 2 time a week. It was an hour car ride each way. I had been in severe pain all of my adult life, until I went to a pain specialist when I was about 45. I am now in no pain.

Judy 48 ROBPI
Jennifer P
Posts: 220
Joined: Wed Sep 09, 2009 7:12 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
Location: Pacific Northwest

Re: OBPIs who haven't had surgery

Post by Jennifer P »

Oh wow, that is very interesting to hear! I don't have severe pain, but my pain does come and go.
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: OBPIs who haven't had surgery

Post by Carolyn J »

FYI, Jennifer, there is a long discussionn Topic Thread on PAIN on this Forum somewhere. Just type the word in the "Search Forum" Box at the top of any page & ALL Posts should come up for you.

Carolyn J
Carolyn J
Adult LOBPI
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