First timer from Portland

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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First timer from Portland

Post by admin »

Hi! I am a 25-year-old with right obpi. I just found out a year ago that there is a name that goes with my injury. It's amazing to read through the messages and relate to so many of the things mentioned. Up until a year ago, I thought it was just me!

Aside from the six months of PT after I was born, I have never consulted a physical therapist or done any sort of exercises. I have fairly good use of my arm, though I do most everything with my left. I work on a computer all day, and have been increasingly bothered by the pain/soreness. I was wondering if there would be value in my seeing a physical therapist. Do you find that regular exercises are beneficial? Is it possible to improve range of motion this late in the game? Or are we just maintaining?

Also, any suggestions for finding a physical therapist that specializes in obpi? Thanks!
Kathleen
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Joined: Sat Nov 03, 2001 5:33 pm

Re: First timer from Portland

Post by Kathleen »

Welcome Lindsay
I am glad you found us all... as we whine about the cold.

First of all it is important to keep your arm exercised and not overuse the un-affected arm. That is hard at your age but lifting heavy things really can do you lots of harm.

I thought I was the only one with this "rare birth injury" until 2 years ago. I am 62 and from NY.

Working on the computer can cause stiff neck etc with out having any bpi problems.
I use a tracker ball instead of a mouse where you use your arm and shoulder and it really has cut down on the pain in the neck and shoulders. I also use a split keyboard because of my arm position. I can use both hands to type but my elbow stick out and my hand is more comfortable at the split keyboard because I don't have to keep my elbows in and hands so close and my palms rest so I can type better... there are keyboard for one handed typists.

There is a great deal of value in PT and OT because you are young and are in the position to take care to prevent secondary injuries to your arms hands neck and shoulders.
I use a local pool now to stretch out ... our muscles stretch better in warm water.

It is very hard to find a pt/ot who specializes in obpi because there is little information on this birth injury. I suggest you read the Awarness information for the parents... it will explain how this happened and many of the rom exercises that are used for the kids we need to do depending on how sever our injuries are.
I thought mine was mild the more I read the more I realized all the things I could not do... and how sever my injury was...
I am right obpi and doing everything with my left hand except write... I was forced to write right handed in school ... and that hurt..LOL...
Again welcome and look on line for some of the support groups in your Area... There are parents there who can direct you to doctors who are familiar with bpi in your area.
Kath
Janny-scotland
Posts: 17
Joined: Fri Nov 02, 2001 5:52 pm

Re: First timer from Portland

Post by Janny-scotland »

hi Lindsay,
im 29 and right obpi.i started a new course of p.t. on wednesday.The therapist i saw was wonderful and although shes never dealt with an erbs patient before ,she really seemed to understand.She even understood about all the assosciated aches and pains...lower back pain, all the pain in my unaffected arm, neck pain etc. etc.
Her theory is that a lot of the pain comes from tense muscles and she is going to help me with relaxation as well as the exersises.she is right though...i used to pride myself in that i was always the first to fall asleep in ante-natal classes because i was so relaxed lol!
so....heres me in my bed trying to do the relaxation thing....only to discover, as one part of me relaxes..another part tenses up!! i havent slept for 2 nights!!!
As for the computer, she says that every few minuites i should flex my arm out,stand up and sit down again....a bit like the hokey cokey LOL!! the theory is that if theres a tense muscle ,this will loosen it.
Im going back this afternoon so ill let you all know how i get on.
Unfortunately im in Scotland so cant reccomend my p.therapist to any of you.....unless anyone fancies a holiday.....

take care,
Janny
TINA-T
Posts: 90
Joined: Sat Nov 03, 2001 9:57 am

Re: First timer from Portland

Post by TINA-T »

Welcome to the funny farm Lindsay :) :)

I am 45 from Michigan and have bilateral obpi. My right is the worst also. AND just like you, until 2 years ago I ALSO thought I was the only one........DAM, little did we know huh :) :) I have never had surgery and never had any problems till about 4 yrs. ago. You might have read in past posts about overuse syndrome well that is when my "overuse syndrome" symptoms started happening. I had to retire due to the pain and stress that my job (well and my life) was putting on my arms. Seems after a certain amount of contorting to do things the way we do them parts of the body just say enough is enough!! I have run the gamut of PT and personally never found much benefit from it. I do however get much satisfaction and relief from a swim aerobics class that I take 2x weekly. As far as improving rom????? At my age I figure I am just maintaining, but you are young and it might be possible for improvement?? The best advice for finding someone in the PT field who KNOWS about bpi is research research reaserch...question question question !!!

Again, welcome and please come back as often as possible!!! This is how we all learn about our conditions..............from one another!!!!
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patpxc
Posts: 315
Joined: Sat Nov 03, 2001 1:06 am
Injury Description, Date, extent, surgical intervention etc: C-5 and C-6. Unable to supinate. Contracture elbow. Wrist bone underdeveloped.
Can raise forearm to mouth level. shoulder is limited in movement. Unable to put arm behind back. Secondary- early arthritis, carpal tunnel, pronator syndrome,scoliosis
Location: Ohio

Re: First timer from Portland

Post by patpxc »

Hi! I'm a 48 year old OBPI right arm. I recently found a letter that my childhood orthopedist wrote. Therapy improved my arm a great deal as a child. Unfortunatel , it didn't last. I agree with T and Kath. The overuse hits us in middle age and maintaining is the best we can hope for. I would try the PT You still have young bones. I use the hot tub and pool in the summer. Too lazy in the winter, I guess. Beware of things like carpal tunnel and pronator syndrome. I think a lot of that comes from writing and computer use. Also, the computer can cause neck spasms- I think we all sit a little crooked. any time you're not in alignment, you risk muscle probles/r spasms. Have you been checked for scoliosis? Good luck. Pat
m&mmom
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Joined: Sun Nov 04, 2001 9:34 am

Re: First timer from Portland

Post by m&mmom »

Have you ever tried acupuncture? It seems to do wonders for my son.
Kathleen
Posts: 1012
Joined: Sat Nov 03, 2001 5:33 pm

Re: Acupuncture

Post by Kathleen »

m&mmom

I am amazed that it works for your so. I have always been told no needles or blood pressure on the right obpi side. Also when I had the emg's done the right obpi side was so sensitive and bled where it was not supposed to... and the danger of infection is higher on the bpi side because it does not heal as fast...
just wondering how this works for your son... can you explain more about acupuncture to us please.
Kath
m&mmom
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Joined: Sun Nov 04, 2001 9:34 am

Re: Acupuncture

Post by m&mmom »

Acupuncture increases the blood flow. It is centered around energy called chi. Any type of injury causes an interruption in the flow of energy. Acupuncture tries to get it moving correctly again. This whole concept was so strange in the beginning, but made more sense as time went on and my mind opened. The needles just go into the skin a tiny bit, there has never been any bleeding. Matthew's arm has been very tight some days, after his appointment it's very loose. Acupuncture also treats the whole body not just the injury. We spoke to our neurologist about it and he said that acup. wouldn't hurt. When Matthew went for primary surgery the docs said he probably had minimal damage to C7&8. Well when they opened the area up he had such a huge neuroma they wondered how he was moving his hand at all. (Matthew didn't get any finger movement until after we started the treatments).
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