United Brachial Plexus Network, Inc.

Hello,
Rick's PT has told him that he has seen no more progress with his ROM therapy and thinks that the insurance company will not continue to pay any longer. They measure his ROM each month and I understand his ROM is not getting any better from a number's perspective. However, Rick is not quite six months out from his ulnar nerve graft and we have not yet seen any signs of movement. It's my understanding that the ROM are important in order to keep his muscles active and to avoid atrophy so that when the surgery does work, his muscles will also still work properly.

We go back to his BP doc and will definitely have a conversation with her about this, but I'd love to hear feedback, suggestions, and advice from others!

Thanks so much!
Kim
Wife of Rick, LTPI

What timeframe did your bpi doc give you for movement? I would check with the bpi doc to make sure that things are still moving along, then ask his/her advice about what to do next with the therapy... does he/she want you to do e-stim? etc etc....

best of luck,
francine

You are entitled to more opinions. Does this advice sound right to you? A bunch of questions go through my mind about this PT hearing this. (Which I prefer not to comment on.) Have you seen a surgeon to consult? Can they recommend a P.T.? Or your pediatrician? Or perhaps you can call around and get different opinions from other P.T.'s and share the info with your pediatrician. Find a P.T. who has lots of experience with this injury. Good luck.

I have talked myself to several about this whole pt, ot thing.. I guess, the problem for the therapist is that if she does not show any progress at all, then the darn insurance companies think the point of continuing is mute. But, I had the dr. send a note to the pt, and ot, telling them he wanted me to continue treatment, even though my rom has not changed in a month or so. I am lacking some movements that are considered normal. And I also have come to a stand still on most others, (not getting any stronger). I will tell you this I am down to now going 1 time every two weeks, and I am suppose to work on it myself at home in the mean time. I guess I will see how that works out! I know what your going through! See if you can't maybe arrange something like that.. something that will keep you in their care, while you are still waiting.

Hello,
Thank you all for your feedback and support.

Good news! We went back to U of Michigan this week and Rick's doc is facilitating a change in therapists for Rick. They have an OT in Saginaw that will hopefully work with them on a formal level in the future with their Brachial Plexus program. In the meantime, she practices in Saginaw, which is 30 miles away. They are hoping that either she or one of her colleagues will take Rick. She specializes in hand/arm OT and has a rapport with Rick's doc.

Rick's doc was as equally upset about the PT giving up on Rick. We are six months out from surgery and now is the time to be ramping up therapy. He is absolutely on target with his progress and we go back in six months. At that time, we should be getting some twitching or other signs....

What a relief

Hi chimley,

I am not sure but I think my therapist (ot) has talked to you and Rick.. She was suppose to start seeing you and because of the distance has transferred you to Frankenmuth.

I am not sure if this is you, but everything she said made me wonder. Not like she gave names or anything.. just mentioned getting a referral for a tbpi patient. But the patient lived so far away she referred them to a friend who lived closer.

shoot me a note if this was you, she was talking about.

I am very glad to hear you were able to continue to get help/ therapy!

Ms. Stang,
Yes, that's us! Such a small world, huh? We were referred to Lydia, but it's an hour away. She was referred to us by Dr. Yang at U of M. She is an excellent doc w/ the Brachial Plexus program there. Have you seen a BP doc yet? How are you doing?

Rick has started w/ his new therapist this past week and what a difference this has made! Although Sheri has been on vacation, her substitute has done a wonderful job getting Rick going.

Your previous email went to our junk mail. It's been nuts around here and I will reply sometime this weekend.

Take care!
Kim
Wife of Rick, LTBPI

You should look into Rick getting in with a pt as well as an ot. I think the stretching from the pt, and massage did a lot of good. My left arm has normal movement, still weak, but the right, well normal movement till the bicep tires, and then I do things different than what would be considered normal. But it bends, and that is better than not bending. It's not strong, and last emg said I still had denervation. I think I have hit my peak, but who knows. I will be 6 months out from injury in October.

shoot me a note when you can.