Can't Reach to her Back

[admin]

My child had a mod-quad, and the result was good for her upward reach, but now almost a year later, she has NO reach toward her back. The doctors said that she would only lose the effort to do a chin-up, but I see that very extensive lose in her rear reach: tucking in her shirt, grabbing a belt; combing her hair; shifting in a chair; pushing herself up from the floor.

I need to understand this, any input would be appreicated.

[AlannahD]

I am trying to remember, but I was thinking that not being able to reach behind the back, or a cheerleader-type stance was a possibility with MOD Quad. CMB

[katep]

I think a lot of doctors performing secondary procedures have underestimated how much internal rotation can end up lost from tendon transfers and releases. So much depends on the strength of the muscles, how much the pecs were released/extended, what role the lats/teres major played in providing internal rotation, etc.. The kids are expected to lose the "chin-up" ability, since this comes primarily from the lats, but behind-the-back, hand-to-belly, and other movements requiring internal rotation are also at risk.

External rotation contractures are also possible after tendon transfers, or even just from recovery. Make sure your daughter can passively do the things you are concerned about. If not, more aggressive therapy or even humeral rotation for more internal rotation could possibly help.

Kate

[Katiesmom0514]

I couldn't agree with Kate more on the doctors underestimations. Katie has lost significant amounts of internal rotation after her tendon transfers. She also can not reach behind her back which she could before and her scapular winging has gotten a lot worse.

Just my 2 cents.

Cheri, Mom to Katie, 3, LOBPI

[Lizzie]

I agree with Kate as well. I do have regrets that I chose for my child to have the mod quad. Largely becuase I feel that I have completely lost a sense of cause/effect or consequence in my child's development.

Surgery is an intervention where muscles and tendons are CUT and TRANSFERED, and the result of that action is a mystery to everyone.

This morning was a pretty typical, getting ready for school. My daughter has her calender high on the wall that she updates every day, and I can see that she using both arms and hands to update that calendar, and I am happy. But when she finishes with the calendar, it is time to get dressed, and her temperment completely changes becuase I know that there are things that she now can't do -- yet in post surgery she momentarily could. With the non-surgical BPI, the parent and child gets used to what they can't do. But with the surgical BPI the child has either a lose of previous function or a fleeting expereince of function, and then in the long-run a confusion as to what is possible or will change.

[admin]

This goes back to what we were discussing a while back about these surgeries being new and not prooven yet. You just don't know what you are going to get with a new surgery.

[Lizzie]

I want to add further that my child's psychological health and general contentment and happiness as a person is supremely important to me. I know that in fact the mod quad surgery has very much interfered with my building and understanding of my child's happiness: My child and I have had moments where we struggled to understand her resistance only later to realize that that resisance was due to her inability to use her arm.

I think that the intent of the mod quad is excellent, but it is importantly flawed in provding parents with outcome guidance.

[claudia]

Juliana had mq over 5 years ago. She was terribly internally rotated the doctor chose to do a "full cut." Yes, the severe internal rotation was corrected, but in exchange, we lost ALL internal rotation. This particular doctor, in my opinion, didn't care about the loss of internal rotation. He cared that we would be able to say, "she can lift her arm up and she is not internally rotated."

We are now getting ready to do a rotational osteotomy to give her some internal rotation. She does not have the ability to touch her body from the chin to the mid thigh.

As for the frustration of knowing what she can do or couldn't do before or after surgery.... I don't agree with that. Juliana is 6+ years old and can dress herself and has for a while now. No, we don't wear jeans except on the weekends, but everything else she does in her own way on her own. Does she KNOW what her limitations are? certainly. And, she will tell you. She could list it: my right hand does this, my left doesn't... She is not upset or disappointed by her ability or lack thereof. We have always told her that there are going to be things that people can do or can't. We let her try EVERYTHING. In about 3 weeks, she will be trying diving. She has spent the last 6 months watching 2 of her siblings do it and she wants to. The coach will work with her alone to see if he can teach her a different way to do things because she can't generate power off her affected arm.

I think that mq and other tendon transfers and releases can be excellent surgeries. And they can be very helpful. Unfortunately, there is a positive and a negative to this (and almost all) surgery. I wish we had known that there was such a big difference between partial and full mq. Of course the doctor never came out to tell us what he found, so it wouldn't have helped us anyway...

Also, kids learn all sorts of compensation, especially as they grow (physically, that is). I know there are things Juliana can do now that just have to do with how her body is longer and leaner than it was when she was a toddler.

claudia

[katep]

I wouldn't chalk it *all* up to partial vs full-cut MQ (although that can be a big part). So much depends on where the function is coming from, and the delicate interrelationship of the muscles around the shoulder. Joshua had very minimal intervention - subscapularis tendon was only partially released by about 1/3-1/2 and the capsule was released. The pecs were not touched. And yet he too has some weakness in internal rotation. I shudder to *imagine* what his lack of internal rotation would be now if we had gone with even more releases and transfers. As it is, he has good function but still has limitations. His limitations are pretty "evenly spread" between things that demand internal *and* external rotation, so that is probably the best he's going to get with the amount of reinervation he has.

It's so very important for parents to realize that 90-100% recovery is not always possible. Tendon transfers change the function of some muscles to try to cover more functions (which is sometimes absolutely critical for any reasonable function at all, but the original function of the muscle is lost). Releases fundamentally weaken muscles (which is sometimes necessary, in order to let the others work better and sometimes the weakness can be overcome with strengthening but not always). But tendon transfers and releases don't create something out of nothing. The amount of recovery of all the other muscles is very difficult to judge in the face of contractures, and so the amount of improvement expected is also difficult to predict. The odds of potential gains and losses need to be very carefully considered.

These surgeries can be miracles. But in order to "maximize" their child's recovery using these surgeries, I believe parents *must* understand and accept that even the best outcome for their child may still be less than 90-100% function. Any surgery is a gamble that the surgery will provide more than it takes away, and the surgical risks themselves are worth the possible return. Being realistic about the possible payoffs and risks helps you to make more grounded decisions and, I believe, helps you to optimize your child's recovery - even if "optimal" is something less than "fixed" for your child.

Kate

[admin]

I think that it is very important that readers hear that Kate is presenting this notion of a partial vs. full mod quad. This notion is entirely new to me, as it may be new to you and it opens the importance that as parents we need to find the ability to be more specific with our surgeons regarding the nature of the mod quad.

Personally when I read this I felt ashamed that I was not aware of these "gradients" or levels of the mod quad