Pain - growing pains or more sinister?

[KathyM]

Hi everyone

I could really use your advice and experiences.

My son (10 yesterday) was born with a right arm BPI. He had his first surgery at 3 months (exploratory and removal of scar tissues) and two sub-scap releases at 2 and 5 years (first one worked at first but clamped up again, resulting in 2nd sub-scap).

Two years ago we went for his latest checkup with Professor Kay here in the UK. We were told he didn't need to see him again.

Chris' arm is generally very good, I would estimate about 80-90% use, but is a little shorter than the other arm and his shoulder blade sticks out.

However, he's started having pain in his affected arm, shoulder and neck. Mainly through the night, but not in his other arm or anywhere else. His mobility in that arm is still very good, but when it is painful he finds it more difficult to use. He does not sleep onhis side and is not lying on his arm at all through the night so we have ruled out him causing it by lying on it etc.

Has anyne else experienced this so long after their last op? Any possible theories? I have booked an appointment with Professor Kay for 5th July (basically the soonest they can see him). Any advice or experiences much much appreciated.

Thanks

Kathy

[njbirk]

Kathy,

Those of us who have lived with this injury our entire lives can share from our experiences, so what I am telling you is what the docs term anecdotal experience and not scientific.

I found that I experienced new pain in my bpi arm and shoulder and esp. for some reason my neck, during times of change in my life. That included puberty, pregnancy, and menepause. These periods of extreme change also brought about more issues related to balance, which seemed to be more difficult during those periods in my life.

Nancy Birk
UBPN President
LOBPI, 51 years

[KathyM]

Thank you very much Nancy. Do you mind me asking how you cope with it? I don't want to pump him full of pain medication but he really needs some sleep.

Thanks again,

Kathy

[KathyM]

If anyone else has any information on pain in older BPI kids, I'd really really appreciate it. We weren't even warned this could be a problem - we were told that he had finished any treatment and was as "cured" as he's going to get. I had no idea pain was common throughout life in kids that had had a good outcome from surgery. I thought we were done with all this and we celebrated his release from constant appointments and physio. I feel so dejected for him.

[njbirk]

Kathy,

I can share what worked/works for me. Hopefully other adults can share their experiences too.

Distraction is key. Esp. for dealing with the dull aching kind of pain. A hot tub or therapy in warm water is beneficial. Stretching is always good, esp. after the hot water.

As an adult, I do take medication. Aleve helps with the pain, and I use a prescription product for my arthritis.

Nancy

[KathyM]

Thank you so much Nancy. We really appreciate the advice.

I think our main problem with the hot bath etc idea would be that Chris gets this pain in bed, enough to wake him through the night.

Maybe some stretching exercises to try in bed would be a good idea, but it might be hard to talk him into that when it happens as it hurts when he moves his arm at all when the pain comes on. Will stretching before bed help towards preventing attacks?

Thanks

Kathy
xx

[KathyM]

Scrap that, I'm not very quick today *lol*. Hot shower and stretching before bed then?

[Judy-T]

Kathy,
I am an adult obpi. The pain started happening to me during puberty and has not let up. I do feel the growth spurts are the worst.I also agree with Nancy's post. I did not have any surgery when I was younger. I was put on pain meds when I was a teen. Massages in the shoulder area helps a great deal.I have had no pain for the past year because of the meds that I am taking. Massages and possibly hot tub would help him alot. I wish I could give you a more positive answer. Give him a hug for me....Judy

[admin]

Kathy-
My daughter is now 18, but her problems with pain began when she was about 10 years old. She had her first surgery at 13 - muscle releases, scar tissue removal - which helped somewhat. But we have found that since that time if she is not getting "formal" physical therapy she will regress to pain in a matter of weeks. Physical therapy - good stretching, weight training, balance work, and occasional pool therapy keeps her pain free. We find that even if she keeps up with her home program, the pain will return if she isn't stretched well by someone else and doesn't have a complete gym workout once a week.
We are in the process of determining if another surgery is needed to re-release muscles. We find that we are constantly having to stay on top of this injury.
Seems like the years between age 3 and 8 we were on "vacation" - we saw gains, and felt we were over the hump. Like you, we mever thought it would come back to bite in such a vicious way.
I wish I could be more help to you and a little more positive, but right now we are struggling just to get her the therapy she needs. Once she turned 18 she lost her Medical assistance and our HMO won't cover anymore on this injury.
Best of luck to you and feel free to write to me if I can answer any more questions for you.
Sue

[Kath]

Kathy
I wish I could be of more help but like the others my pain started when I was young. Warm water exercise helps to keep our ROM. I feel you need to have your son evaluated by a bpi specialist. You really need some answers. Have you spoken with Karen H from the UK she is a great resource and support person.

My Mothers use to use some sort of mustard plaster on my back and over the counter rubs. I use mineral ice sometimes just to distract and warm up my arm. I have had B-12 shots on and off ever since I hit puberty. I found when I was not getting the shots for a few years the zinging in may arm would start up again.
About 6 years ago both arms were terrible and I kept insisting the doctor give me b-12 for the stinging and shocks in my arm. Once I began to get the shots again my arm went back to sleep. I still have problems with the cold... it freezes even when I am useing my hands and arm. I cannot tolorate cold at all on bpi side...
I am in PT again for another round... My PT just used Tape on my shoulder to stablize it. ( most bpi will tell you our arms feel like we have a weight hanging)

Please check the Medical Resource Directory here at UBPN.

There is a pain topic on the adult/obpi message board
http://ubpn.org/messageboard/thread ... hread=4021

Kath