United Brachial Plexus Network, Inc.

My 14 yr old daughter has RTBPI since January. We have had surgery at the Mayo and are waiting results of that (it could take up to 2 years. My question is she has been receiving OT, ST & PT since her accident but her PT says there is nothing more she can do for her, and she wants to discharge her from PT and just let her continue with her exercises at home. Does this make sense? How long do you usually go to physical therapy after accident or surgery? Nobody here in Alaska seems to know anything about this type of injury. We need help with advise.

Hi Rene..... I did PT for 31/2 years and kind of decided with my physio that I needed a break. I needed to see how my body would function on its own with no therapy. I had a H U G E increase in pain levels but now, 8 months later, I am doing ok. Being that you guys are still so new to this injury, I would not advise stopping just yet!! Especially if your daughter somewhat recently has surgery, which yes can take FOREVER to see the results, I persoanlly would not stop yet. Insurance can be hard too as it is HARD to note a difference with the arm, with numbers that is. My insurance quesitoned it a bit but poop on them!!!! Has your daughters PT talked with other PTs who have experience iwth the injury? I started with a new PT when I started water therapy and she was not very familiar with the injury either. I put her in contact with a PT in Wisconson (I live in Michigan) who works all time time withBPI in the water and we went from there. It was a learning experience for all involved. If you are interested in any PT info email me and i will share with you.... Also have you asked the doctors at Mayo their thoughts about stopping therapy?? I hope this helps a bit!!

COurt xx

Hi Rene,
How did your daughter get her injury? I to am a complete RTBPI which i suffered when i was 15. I am now three years post injury and am doing pretty good. Is your daughter in pain? As far as physio goes its important to keep the range of motion in the shoulder and keep the flexibility in the fingers. Can the physio teach you the exercises? That's what my physio did for me. The other option i had was to see the physio once a month or so. If your daughter wants to talk to me i can give you my email. Seeing how i can relate to how she is feeling. anyways i hope i helped some.

Andrew

Andrew thank you so much for replying. She was in a sledding accident and hit a utility pole at a very high rate of speed. She was dominate right hand so she has had to relearn everything for her left hand. She would dearly love to talk to someone about all the challenges she is going through. She has a great attitude towards almost everything. She only gets weepy every once in a while when she is over tired or frustrated about what she hasn't figured out how to do with one hand. The doctors are all equally amazed that she has no pain at all in her bpi arm. She is completely off all pain meds and anti-depressants. The P.T. has showed us some exercises to do and they gave her a splint to wear at night. I 'm not sure what to do about the hand, it has gotten so stiff.
they really don't do anything for it. I guess because she wont be getting any movement below the elbow they concentrate on her shoulder and bicep.

Hi Rene,

I agree that you don't want to stop with therapy this early on. John ended up having PT twice a week & also OT twice a week for awhile. OT dropped off after around 6 months but he is still continuing w/PT (and his last major surgery was over 2 years ago). He also does daily therapy at home.

One good thing about the OT was she worked with John in the swimming pool - and that opened up a lot more things he could do for range of motion.

John's deltoid only started to "fire" this year (that nerve had the longest to grow out) - so there is still plenty to do with both ROM and biofeedback.

Also, our local PT spoke several times with Denise at Mayo - she or (Tom? forgot his name) are more than happy to give direction. We also camcorded Denise working with John up there so the local guy could more easily see what he needed to do, as well as a reminder to us.

The current challenge is that after 2 1/2 years of PT, John is totally bored & sick of it. I have agreed to give him the summer "off" (he just goes back once a month to be sure he's on track). But in August he'll have some tweaking surgery on his thumb, and he's agreed to get back to the old schedule after that.

Take care,

Ellen