another surgery!!!

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

another surgery!!!

Post by admin »

My daughters surgeon is recommening a muscle transfer and release to addresss subtle functional issues as well as overall appearance. She does have good fuction but he feel it will give her more strength and also improve the appearance which becomes an issues for the children especially around the age of 8. Shi is now 6 years old and at this point does not feel any differnet. Of course I would love for her to be able to make the decision, but it is in my hands. Do I intervene now to try and spare her emotional pain as she gets older, or wait until she can be part of the decision making process. Any thoughts???
BrianD
Posts: 54
Joined: Sat Jan 17, 2004 2:53 am

Re: another surgery!!!

Post by BrianD »

I wish my parents could and would have done something about it when I was younger. I look back at all the things I couldn't do and realize I missed a lot. I don't know that much about that procedure, but if it will help her in the future I say go for it. I and my parents were always told that I should be thankful for the use that I have. As many of the adults have heard. Now that there are procedures that will fix things, I say do it. I hope this helps. Good luck.
kamren
Posts: 262
Joined: Sun Feb 15, 2004 7:19 am

Re: another surgery!!!

Post by kamren »

When I was a kid....these kind of things were not even an option....they were like dream surgeries to me. Something you want, but will never happen. How I wish they had had them then.
njbirk
Posts: 1806
Joined: Wed Oct 24, 2001 10:09 pm

Re: another surgery!!!

Post by njbirk »

I did have surgery as a child. I was in 5th grade and then in 6th, and I remember the changes those two surgeries brought to me and I was very grateful for those changes. I have sought surgery in my life, and have had, beyond those as a child, also had two as an adult.

Now I know it was very unusual for someone my age (50) to have had muscle and tendon transfers and releases in the 1950s and 60s. Those surgeries were not often done, in fact I've not met another adult who had surgery as I did at that time period.

It was the right thing for me and for my family. My parents gave me the choice and I wanted it. Then after I saw the results, I was eager for more and have continued to seek out, not only surgery, but alternatives therapies that have helped to improve my life.

My case was different, in that the deficits were noticeable and the improvement was dramatic. I realize that you are asking something a little different in that your child's injury is not so severe. But I think if she can have improvement now, it will help her through the rest of her life, both physically and emotionally.

Nancy
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: another surgery!!!

Post by Carolyn J »

I had one muscle transfer at age 24b in the 60's and it was very helpful (I'm now 65 & just found this forum last month); I wish I had known there were other options and also that there was a name for this. I say go for it all and your daughter will be soooo grateful that you did everything you could. We had no knowledge or options when we were your daughter's age. Good luck. Children are so resilient the earlier they have surery,the better: that's my experience with my son who has had 14 surgeries due to rubella. Carolyn
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: another surgery!!!

Post by Kath »

Hi

The did not have surgery when I was younger I am 64 robpi and all of my life I sought information and perhaps some sort of surgery to improve the use of my arm and also to take the strain off of the unaffected arm. I was never offered any hope for change. I did not find ubpn until 3 weeks after my 60th Birthday.

I wish I had options when I was younger.

Kath
Kath robpi/adult

Kathleen Mallozzi
rachelcasa
Posts: 729
Joined: Mon Apr 21, 2003 11:45 pm

Re: another surgery!!!

Post by rachelcasa »

I feel the same way as everyone. I am 32 and trying to find someone who could do a surgery was not possible. I just had the mod quad done in Sept. and am so greatful that I had it done and also to all the wonderful people who have helped me get there. I think your daughter would benefit a great deal from the surgery. I'm sure it seems traumatic now, but as you age,your arm also starts to atrophy. I was 3 inches shorter before surgery and now only an inch in length difference. Just make sure you do research and I would say go for it!!
Good Luck to you
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