Alternative to surgery

[Marnie]

Not trying to stir the pot more than it already seems to be, but I am wondering what the alternative to surgery would be for internal rotation? Peyton will be 5 Sept 5 and we went and saw an orthopaedic surgeon 1 week ago, he says Peyton has no external rotation, so I am just curious as to what the alternative to surgery would be for this?

[m&mmom]

Marnie,
We are starting estim with the TES unit. I'm not sure what the age limit is before they recommend other units. The doc explained to us that if we try to build up the external rotators that maybe it will be enough to hopefully pull his arm out of some of the internal rotation. You could try massage, but the muscles have the rest of the day to react but I still believe that it could help so we have currently added massage to Matthew's therapy schedule.
Cindy

[Marnie]

anyone else??????

[TNT1999]

That's a great ? and I sure do wish I had a magical solution for you. I don't know Peyton's history. Has she ever had any surgery? Has she been in PT/OT since birth? If she hasn't been in formal PT/OT, then of course, I would say to give that a try first. Unfortunately, after lots of PT, OT, Aqua PT, TES, etc. etc., our daughter was not able to avoid the Mod Quad surgery followed by Capsulodesis surgery 9 months later. Both procedures helped with external rotation (esp. the Caps surgery). Another question, what type of surgery was recommended? I ask b/c from what I've seen most Ortho. surgeons recommend the derotational osteotomy. One Ortho. surgeon recommended that for Nicole, but we decided to have the Caps. done first and see if that will "hold" (so far so good, but only 6 months post-op). So, if you don't find a non-surgical alternative, perhaps you might find a less-invasive surgical approach. BTW, I did explore some splinting options, but none of Nicole's therapists were too keen on the only possible options which would hold her arm in a position that would limit her in other areas of her range. Plus, her surgeon told me that her arm would just go right back to the way it was when the splint was removed. It may be something you want to discuss with your BP team though. If you find a non-surgical "cure" PLEASE share it with the board! Take care. -Tina

[francine]

Hi Marnie - the way it was explained to us (about Maia's specific condition) is that when there is a contracture (which if formed because of a muscle imbalance) that even if you did therapy for 1 or 2 hours a day, it will still be contracting for the other 22-23 hours a day. The shoulder is really susceptible to this because there are so many muscles involved.

We also do a LOT of work every day - therapy, specific activity, many alternatives, massage every day, stretching, fascia release and it got really bad so we really had no choice (unfortunately).

But this is about Maia.... Peyton may have different stuff going on or not going on.

[Marnie]

Tina, Peyton had pt once a month until about 15 months old. The reason he has'nt had anymore was because we got a new insurance company (not by choice) and the insurance company would not continue to cover, they said he had to get so much percentage of recovery for them to continue to cover it. The therapist said that she was going to be releasing him soon anyways, so I thought at the time (know differently now)that it was ok. At the same time Peyton's pediatrician was out sick so Peyton would see whatever Dr in the group was available if he was sick. Then we learned that Peytons pediatrician died of cancer, so, there was really noone following his injury, and I thought that there was nothing that we should be doing, I thought that there was nothing that they could do for him, that he would just live the rest of his life holding his arm a little differently. It was'nt until I found this board a couple of months ago that I realized there were things that could be done and that there could be problems in the future. I never knew there could be problems in the future, no one told me this. It was easter and Peyton was trying to play catch with his daddy and his left arm is the affected arm and of course that's the arm that you catch with, he has no external rotation so it was difficult for him to catch and i watched him put the glove down and wanted to do something else, that was when I got mad and sat down to the computer. So here I am, I learned that you could send a video yourself to TCH and that's what I did, they have recommended mod quad, possibly caps and biceps lengthing. This is all so new to me, since we have'nt done anything for his injury in so long, please don't think that I am ingnorant, we were just led to believe that there was nothing that we should be doing. I have leaned alot from this board and from Francine's website and I am so thankful for them both, wish I would have known about them sooner since Peyton will be 5 in September. But, I was just curious to hear from all the people who choose not to have surgery what the alternative would be for Peyton.

Marnie

[TNT1999]

Hi, Marnie. Firstly, I'd like ot apologize for referring to Peyton as a girl. Oops! Thank you for explaining where you were coming from. Unfortunately, your story is not unique and there are a lot of parents who were given inaccurate information regarding treatment options for BPIs. I know that the Internet is greatly helping to change that (of course, combined with great websites like this one and others). I don't think you're ignorant and I hope I didn't give that impression in my post. I asked about the therapy he'd had b/c I figured that if he hadn't ever been in formal therapy or even for a while, that I would possibly want to try that first and see if that's all it takes. Often, it isn't enough, but in injuries that aren't as severe, it could help enough. Perhaps you could dedicate 1-2 months to intensive therapy, if Peyton would be a willing participant, and see the progress at that point. If it doesn't seem to be making much of a difference, then maybe you'll feel confident at that point that surgery is the answer. I guess what I'm saying is that I wouldn't rush into surgery w/o first giving some serious therapy a shot. That's just me though. Others may tell you that therapy won't help and maybe it won't help enough, but there are different levels of severity with this injury and how do you know unless you try it. One thing you might think about when making your decision is if you just do surgery right away (I'm not saying there's anything wrong with that if that's your decision), will you always wonder in the back of your mind -- should we have tried PT/OT first?

BTW, I have a friend who also has a daughter with a BPI. She'll be 5 in Aug. She's had some therapy off an on, but not much at all. They went for a couple of surgical consults and the surgeons both suggested about 1-2 months of intensive therapy first. The result is that they now both agree that she will benefit from surgery (same issues too -- internal rotation). If you'd like, I'll pass along your email addy to her and ask her to email you.

Although the sooner the surgery is done, the better the results, it's not so time critical that a couple of months will make a huge impact (as with primary nerve surgery). I know these decisions aren't easy. I hope this helped.

-Tina

[Jess in MI]

I don't know if you currently have insurance that will cover therapy, but I thought I'd mention that many states (if not most) have programs through the school system that offer free therapy. Call your local school district and see if they can put you in contact with this agency. Also many states offer a supplemental insurance for specific medical conditions. This might be something to look into also if your insurance only covers a percentage of therapy.

I agree with Tina's suggestion to start some intensive therapy for a few months if see if you get any improvement. Look into aqua therapy or see if your therapist could give you some specific exercises that would help to increase external rotation.

Is Peyton otherwise functional? Does his lack of external rotation prevent many life activities? Also ask the specialists if the lack of ext rotation will prevent any more problems in the future. Those are always things I consider with my almost 4 y/o when contemplating any possible surgical procedures. I know it's not the case for everyone but I think function is much more important range in most cases! Jess

[Marnie]

Tina,

your information has been really helpful and I would love for you to forward my email address to your friend. Thanks so much!

[Marnie]

Jess,

Peyton is pretty much functional except for external rotation, he has a hard time lifting his arm over head for very long, he can get it up there but he has to throw it up there, or he will use his other hand to help it up there.