33 yr old -ROBPI- Thoracic Outlet Surgery...

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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admin
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33 yr old -ROBPI- Thoracic Outlet Surgery...

Post by admin »

I am 33 yrs old and ROBPI - I have use 75% usage of right arm but over the last 4 years gradually worsening to now often severe pain between neck and shoulder. In process of being diagnosed with Thoracic Outlet Syndrome. Do any other OBPI adults have this issue; have had surgery or any comments?
Thanks! I am in Boston ~
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: 33 yr old -ROBPI- Thoracic Outlet Surgery...

Post by Kath »

Pam
A few years ago a doctor mentioned that as a possibility when I had so much pain. No one ever mentioned surgery to me and I had long term PT on both arms, neck and upper back. I used a combination of treatments and PT. I am still not sure if that was it or not just glad the pain is gone.
I wish I could help. Have you seen a bpi specialist and one that is VERY familiar with OBPI?

Kath
Kath robpi/adult

Kathleen Mallozzi
admin
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Re: 33 yr old -ROBPI- Thoracic Outlet Surgery...

Post by admin »

I was a long time patient of Dr. Waters at Children's. The problem with that is after 20 years of him being my doctor I am unable to go to Childrens any more. He refered me to a great Doc and will still be active with my case but I don't think a there is a ton of knowledge of Adult OPBI.
rachelcasa
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Joined: Mon Apr 21, 2003 11:45 pm

Re: 33 yr old -ROBPI- Thoracic Outlet Surgery...

Post by rachelcasa »

Hello Pam and welcome to the boards. I am also 33 with LOBPI. I haven't had any problems with the thoracic syndrome. I wish I could help you out. Are you going to go to camp in September? I had surgery with Dr. Nath in Sept. 2003. My arm was shrinking and paralyzing itself. I have regained two inches in length however, I still cannot straigten my arm or touch the top of my head without bending my head down. I look forward to talking with you more.
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