United Brachial Plexus Network, Inc.

We recently underwent a Botox treatment for our now 5.5 mth old son Kanaan. The Botox treatment and casting itself was uneventful. The cast had been on for a couple of days short of four weeks as of today when I took my son in to make sure that the cast was not to tight. Kanaan had been unnecessarily fussy for the past couple of days. The doc decided to go ahead and take the cast off.

Well, the mission of reducing posterior shoulder subluxation was accomplished as his humeral head is correctly positioned in the joint. I have to say that I wasn't prepared for the cast to come off and was emotionally overwhelmed looking at his arm again.

The cast coming off is a good thing but I'm a little "taken back" b/c, of course, his arm is weak and looks so. The doctor seemed please with his initial movements.

The cast was like a "break". I didn't have to look at his arm and I didn't have to work on his arm. All of a sudden, I have emotions coming back that I wasn't ready for b/c the concern has resurfaced
from it's dormant place.

Right now, I'm reminded that he has a long road ahead. Things will be greatly improved I'm sure within the next couple of weeks as he looses stiffness from being in the cast and he gets to
practice using his arm again.

Our hope is that his muscles would loosen and relax where they need to and that he would "remember" what he knew how to do before. We are also hopeful and prayerful that his external rotators would begin to "wake up" so as to hold the joint together and facilitate additional movements. We are supposed to take him through gentle ROM but not start formal therapy for another couple of weeks

For those of you that have had any type of casting done following a procedure/surgery, what was your initial reaction once the cast came off? What was your experience with the muscles relaxing after being held still in a cast for awhile?

It was so weird cuz when the cast came off, Kanaan just held his arm kind of "frozen" in the cast position. He's loosened up a little already but still not doing things he was doing before (hand to mouth well). It's like he has to remember that arm was over there.

Chrystal

Our son had a cast on for three weeks following the anterior capsule release. I agree about the cast period being a "break". I had never been so relaxed about his arm! There was no therapy to do, no movement to watch for... whew it was really a nice "vacation".

I was overwhelmed with how "normal" his arm looked when the cast was removed. His movements were a definitely stiff at first, but the difference between being dislocated and internally rotated and then not... well, it looked like a new arm, even if it was kindof "frozen" in the new position! I didn't notice it looking smaller at all.

We had a week of intensive therapy right after the cast came off, and all I really remember is that was a grueling week! And Joshua was in a strange place and so not sleeping very well (we were at the Ronald McDonald house). I think that the whole situation was so overwhelming for us that we didn't get too overwhelmed by having to deal with his arm again, there was so much else to deal with, too. I can see where coming back from that "vacation" with the cast might be hard, especially if you weren't mentally prepared for it.

By the end of the first week out of the cast, he was much less stiff, but I would say his movements only started getting more fluid and really coordinated together after about 2 months. During those two months, he seemed to go through a bunch of different compensatory movements (his shoulder winged dramatically for a little bit, sloped dramatically for another little bit, and now seems fairly stabilized and working together pretty well). I think these different stages were him trying to figure out how the new muscles worked together. There were muscles that never were able to work because of the dislocation, and also muscles that seemed to work much better with the shoulder internally rotated. Everything had changed!

Kanaan is going to be a little stiff and a little sore, but that should improve with time and gentle ROM. It took our son quite awhile to get back to weightbearing again, but everything else came back fairly quickly. It took finding a crawl-through log at the mall play area to really get him crawling again, though! He had to re-learn to crawl, too, since all his crawling before was with a dislocating and internally rotated joint. It's a hard road, but I hope that as time passes you gain confidence that it was the right thing to do.

Please keep us posted! I wish that we had discovered our son's shoulder problems early enough that we could have tried this route. Maybe it would've saved him a surgery, and allowed him some critical developmental time without a dislocating shoulder.

Kate

I agree with you on his arm looking normal. He wasn't internally rotated. I guess what was unexpected (just cuz I hadn't thought about it) was that he was stiff. That was a little scary cuz I hadn't thought much about what it would be like when the cast came off. I think I've mispoken after reading your email. His arm wasn't smaller/weaker...just stiff and not moving in his "normal" movements even though normal wasn't right. It just felt weird for him to have "lost" ground even though it wasn't good ground if that makes any sense.

What was the reason for intensive therapy? I was instructed to do gentle ROM. I know that the two procedures are different but I'm just curious

Thanks for the time frame. That helps.

Also, you mentioned his shoulder winging and shoulder sloping. Can you tell me what you mean by shoulder winging? I know what scapular winging is but can't figure out shoulder winging.

I do have to remember that it takes time for him to figure out how to use the muscles. I'm praying that once he realizes that his external rotators CAN work b/c of the new biomechanics of the joint that they WILL work.

Can you also explain to me how Anterior Capsule Release difference from Muscle Transfer and why that was a better choice. It's seems much less invasive and I'm surprised that I haven't heard more people doing it.

I agree with you on his arm looking normal. He wasn't internally rotated. I guess what was unexpected (just cuz I hadn't thought about it) was that he was stiff. That was a little scary cuz I hadn't thought much about what it would be like when the cast came off. I think I've mispoken after reading your email. His arm wasn't smaller/weaker...just stiff and not moving in his "normal" movements even though normal wasn't right. It just felt weird for him to have "lost" ground even though it wasn't good ground if that makes any sense.

What was the reason for intensive therapy? I was instructed to do gentle ROM. I know that the two procedures are different but I'm just curious

Thanks for the time frame. That helps.

Also, you mentioned his shoulder winging and shoulder sloping. Can you tell me what you mean by shoulder winging? I know what scapular winging is but can't figure out shoulder winging.

I do have to remember that it takes time for him to figure out how to use the muscles. I'm praying that once he realizes that his external rotators CAN work b/c of the new biomechanics of the joint that they WILL work.

Can you also explain to me how Anterior Capsule Release difference from Muscle Transfer and why that was a better choice. It's seems much less invasive and I'm surprised that I haven't heard more people doing it.

oops...i forgot to log in...the above message was from me!

chrystal

Oops... I meant to say shoulder sloping and scapular winging! Sorry to confuse you by making up new terms

The intensive therapy was oriented towards active movement (still just gentle ROM). I think it is partly because our surgery was done far away, but alot of it was trying to engage the correct muscles right away. Just a lot of active reaching and encouragement to use the arm (well, as much as you can expect from a 1 year old!) Sort of a supervised "introduction to the new arm" period, since we were on our own after that!

The anterior capsule release puts the humeral head back into the socket by loosening the tight front of the joint capsule which is contracted. The procedure also includes some element of subscapularis release (our son's subscap tendon was bisectected about 1/2 way which effectively lengthens the tendon). Tendon transfers take the latissimus dorsi and teres major muscles and change their action from internal rotators and adductors to external rotators and abductors. This is done by completely releasing their tendons from their original insertion point in the humerus, rerouting and reinserting them in a new place so when they contract they externally rotate the arm instead.

Often these two procedures (capsule release and tendon transfer) are combined - the first surgeon we saw believes they should always be done together and that the capsule release alone won't work. The surgeon we went with does just the capsule release in younger children, and the combination of both in older kids (~2 years and up). He believes that the younger kids still have time for the abductors and external rotator muscles to recover, and so does the minimum necessary to get the ball back into socket and induce the joint to grow out correctly, to give the nerves the full time to recover. After about 2 he doesn't expect a lot of additional nerve recovery. (although I think his opinion might change as he sees more kids like our son come out of the capsule-release-only with their external rotators working!)

We can look back now and say the capsule release only was the correct choice for our son, but we definitely didn't know that beforehand. Our thoughts were, he was still young (13 months old at time of surgery) and that there was still time to intervene again if the capsule release only approach didn't work. We also felt there was a good chance that he either already had hidden muscle recovery or that he might still get those muscles in. The doctor gave us odds of about 50% that he will eventually need tendon transfers, but we felt a 50% chance that he *wouldn't* need to have his muscles rearranged was worth the risk. We didn't want him to give up the original function of those muscles if it wasn't absolutely necessary.

Now we know that just doing the capsule release *was* the right choice because it turns out our son *does* have a lot of external rotation!! It was just hidden by the dislocated joint. He is gradually getting more and more abduction, but there is still a chance he'll need tendon transfers if it doesn't come in more. If it comes to that, we'll have to weigh very carefully what he would've been able to do with those muscles that he would be giving up vs what he would gain. I will feel more comfortable doing that surgery when he is a little older and we can see what his real function is, and also what activities he seems to be attracted to.

Even if our son does end up having the tendon transfers after all, it will still be better because hopefully his joint will be formed more correctly by that time, and we know he already has external rotation on his own. The doctor will be able to customize the procedure more for abduction - since he won't have to make the muscles do both external rotation and abduction - which should provide better results.

I'm surprised that I haven't heard of more people doing this procedure, too. It's been a miracle for us...

Egads... that was a disseration!

As amazing as this surgery was for us, I hope that Kanaan's botox and casting means you won't have to go through it, that he's all done with interventions and can now just grow up!

We'll continue to pray for him and your family.

Kate

Thanks again Kate for your "dissertation". They are always VERY helpful. I learn something new everytime!

Can you explain how the botox and casting helps to reduce the shoulder? And did you have a before and after MRI to know it got back in place? Do they expect it to go back out of place again? It sounds very interesting and I would like to learn more.
Thanks!

I know that for a young child, ultrasonography has been shown to be as effective at imaging the shoulder as an MRI and is less invasive. This is what Pearl used in his original series of kids who had the anterior capsule release, and so he's done a lot of work proving that ultrasound and MRI allow equivalent measurements and visualization of the joint (so his early data could be compared to MRI scans as they grow older). It only works while the shoulder is still primarily cartilage, though. Once the joint starts to turn to bone, it is no longer "transparent" to ultrasound.

I'm sure I have a reference on this somewhere...

Kate

The idea behind this procedure is that since internal contracture is what causes a posterior/subluxation of the joint, a relaxation or weakening or the internal rotators to give the external rotators a chance to "wake up" might give the shoulder joint a chance. During the procedure, Botox is administered and the shoulder joint is reduced via a "closed reduction". The joint is then casted in external rotation to aid in the formation of the glenoid-humeral joint. Hopefully the joint will be stable enough to "hold" until external rotators come in and can "keep" everything in place.

The doctor told me that out of 42 children, that have been "botoxed" and casted, 3 have had to go on to secondary surgery.

It can go back out of place again in which case, botox can be utilized again to extend the time frame. However, botox wouldn't be used a third time because of the possibility of the child developing an antibody for the toxin and it not being able to work at all again in the future if necessary.

We are hopeful, anxious and prayerful, but hopeful.

Chrystal