United Brachial Plexus Network, Inc.

Hi everyone! Our daughter just had her spica cast removed on Monday...she is still very much favoring her arm, although she is complaining less about it hurting...I have not done stretching yet because I am very afraid, and the PT in Boston said it was ok to wait until our first PT visit here at home, which is this Wednesday anyway...Just wondering if anyone else out there can give me some insight into the progression of the recovery after the cast is removed...right away (well, after almost 2 hours of coaxing her to put her arm down) Juliana was able to put her hand right behind her head, something which she was never capable of before with ease...she always had to "crawl" it along her head...then a few hours later back in the hotel, she shows me that she can turn that palm up to the sky! We were in tears! That was really unexpected for this surgery...we really thought that it would not be fixed much with the tendon transfer and that the osteotomy would be also needed down the road. But now she seems like it is weak, and she has a fear of straightening her arm and she is really holding it bent, almost at a 90 degree angle all of the time...Does anyone have any stories to share about the time between the cast coming off and the first PT visit??? Thanks Kim

I hope Julianna has an amazing recovery from this surgery. I just thought I would offer a little advice for the PT visit since I dont have experience with that particular cast and surgery. I would reccommend some tylenol or motrin or something to that effect before the appt so that when she is gettign stretched for the first time since before surgery that it will not be so painful.

Good Luck!
Amy 19 years old ROBPI from MN

Hurrayyyy for Juliana!! and her new milestone--turning palm up & other??[sorry I just blanked out!]!!!
I love to celebrate Milestones...let's have a pot banging parade!
HUGS,
Carolyn J
Adult LOBPI

Hi Amy!

Thanks for the great suggestion I really hope that she has great improvement and does not require another surgery....Juliana also has a ROBPI...how are you doing? Have you had any surgery yourself?

Hi Carolyn! It really and truly was one of the happiest moments in mine and my husband's lives! To see her do something that we never thought she would be able to do is amazing...we still have a long road to go, but I know that if we work together we can make it better, and she has been such a big trooper through all of this...Thank you so much for your well wishes! Hugs back to you

Kim

Hi Kim,
You asked if I have had any surgeries, yes, I have had four at ages 6, 10, 12, and 18. My surgeries at ages 6 and 18 were mostly for hand function. My surgery at age 10 was an attempt to gain overhead. and my surgery at age 12 was a slight revision/addition to my first surgery and gave me a little better wrist function.

After all of these surgeries, I think I am doing pretty well. There is not much I can not do and even fewer things I am not willing to try. I like to try most things once before I decide if I like it or not. If I like something, I will find a way to do it! I play softball and have since I was in 3rd grade! I love it!
I have a website set up that has the long version of all this if you want to check it out. There is also a current journal of whats going on with me now. I update that about once a month or as stuff comes up. www.freewebs.com/bpimn

feel free to ask me any thing, I am always open to questions!

Hugs,
Amy 19 ROBPI from MN

Hi,

Our son Sam underwent a muscle/tendon transfer by Dr. Waters in Boston about 2 years ago when he was 3. The first 2-3 days out of the cast were awkward for him. He actually would "carry" his left(affected) arm around by holding the wrist with his right hand. He said it wasn't painful, he was just scared to put it down. He was so used to it being up in the air for 5 wks. They warned us that might happen when they took the cast off.
By the third day he would let it down.

I'm pretty sure we met with Michelle, Dr. Waters' PT the day the cast came off. She showed us some easy ROM things to try before we began his aggressive therapy in 2 wks. They major thing we learned when he began his 2x wk aggressive therapy was being very careful with the positioning of his arm. Some motions can actually disrupt the sutures. Not activities Sam would do naturally, but positions we may over stretch during therapy. We were very lucky that we found a therapist 30 mins. from our home who worked previously on Dr. Waters BPI team at Children's. Tylenol or Motrin before therapy is a great idea. The first few sessions were not very pleasant for Sam, but it improved quickly as the muscles and tendon loosened up.

Two years later and Sam's shoulder relocated back into place and the socket remolded it's self. Unfortunately his supination has not returned and his elbow has a catch. It has not contracted, because we can pretty much straighten it when we do his therapy. He will be having an osteotomy in February.

Best of luck with your daughter's recovery.

Jen

Hi Jen...I am glad to hear that Sam did so well, and I am sorry that his supination has not returned...that is our fear with Juliana as well...I did not realize at first, actually until right before the surgery, that it was tow completely separate procedures. I am definately going to try the tylenol before her appointment tomorrow, I hope it helps. She also was carrying her arm around with the other hand for a few days...I still see her carry it folded accross her body, which concerns me, but I am too afraid to do the stretches without being shown what to do first...I dont want to cause any damage. Thanks for the info, I feel a bit better now about her reactions... I wish you guys the best of luck in February.

Kim