New here, comments on our situation welcomed

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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Joined: Mon Nov 16, 2009 9:59 pm

New here, comments on our situation welcomed

Post by admin »

Hello, I will try to make a long story short. My husband's arm is paralyzed. He and his family started noticing when he was a boy, say, before age 7 or earlier that his fingers were not fully functional. They are not fully sure how this happened, possibly injured during a difficult birth--As time passed, though he still had full movement and function in his arm, it was notably weaker and smaller than the other arm. By the time he was entering high school, his parents found a doctor who thought he could help him. The dr. did a tendon transfer surgery, taking the good tendon from his elbow area and put it to work his fingers. The idea was that if they could gain full function in his hand, he would use his arm more, consequently, it was "supposed" to gain more strength. Sadly, by now, the arm is totally useless. It appears to me, though I wasn't in the picture yet, that all that the surgery did was hasten the deterioration of the arm. It now hangs limp, has no muscle whatsoever. The muscles in his shoulder, back and chest have all deteriorated. He has no or very little feeling in it.

To make matters worse, since it's always hanging in the way, he injured it this summer by scratching it on something. Now, the wound since July has not healed yet...

I'm so worried about him. I married him knowing full well the problems with his arm, but I must admit I did not foresee how this situation could become worse. I worry that he will wear his good arm out. He gets headaches because his neck is always out of whack from the muscle deterioration.

I am just wondering if there's anyone else out there who has simililar problems, any ideas, or anyone who can help him. Thanks so much.
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: New here, comments on our situation welcomed

Post by admin »

I have never heard of such a condition...over about 20 years he slowly lost the use of his arm. I only have heard of the instant injuries, one minute you have a healthy arm, the next minute its not either thru accident trauma or birth trauma. What have surgeons diagnosed him as.
Ladybug
Posts: 3
Joined: Tue Oct 28, 2003 12:43 pm

Re: New here, comments on our situation welcomed

Post by Ladybug »

Hi, that was me above. I was also wondering what you do to keep your arm warm. His gets so cold. (We live in a cold climate in the winter, which does help matters any)
m&mmom
Posts: 1395
Joined: Sun Nov 04, 2001 9:34 am

Re: New here, comments on our situation welcomed

Post by m&mmom »

We went to an acupuncturist who mixed ginger with olive or sesame oil. It would heat up and loosen Matthew's arm almost immediately. I also practice Reiki on my son and his arm/back is always warm after I'm done.

Cindy
njbirk
Posts: 1806
Joined: Wed Oct 24, 2001 10:09 pm

Re: New here, comments on our situation welcomed

Post by njbirk »

I replied to this on the general board.

Nancy
Ladybug
Posts: 3
Joined: Tue Oct 28, 2003 12:43 pm

Re: New here, comments on our situation welcomed

Post by Ladybug »

Thanks for all your comments. As for the injury, as I've been reading the boards here and researching, I am finding that his case is not typical of many people here.

I do know that his mother said his birth was tramatic and they pulled on him a great deal to get him out. She also said he cried every night for four hours straight until he crashed into sleep for the first year. I am thinking he must have been in pain from his injury. Other than that, they really didn't notice any paralysis until he was a boy and was swimming and he couldn't raise his fingers in that hand.

I feel what destroyed his arm completely was the surgery they tried when he was a teenager. It was after that that it gradually stopped functioning altogether. This was back in the 80's; no doubt they have come a long way now in diagnosing and helping this problem--they really didn't seem to know what they were dealing with then. It is just now that in finding this board that we have found a "name" for this.

I find this absolutely horrible that this is happening to otherwise perfectly healthy babies in birth. It makes me start to cry thinking about this.

Thanks again for all your thoughts. More opinions are more than welcome.
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