anyone have problems from mod quad?

[katep]

loss of function from surgeries has not been very well documented. my son had the surgery discussed in the paper Court just posted (arthroscopic anterior capsule release) -

http://www.ejbjs.org/cgi/content/abstract/88/3/564

it's interesting to note that the authors didn't even start measuring pre-operative internal rotation range in order to judge losses from surgery until half-way thru their study. i don't blame them, though... most of the papers i've seen on secondary procedures have not reported results/losses for internal rotation. it's true that some kids do just fine, but some have significant functional deficits as a result of surgery. and from this discussion and the results shared in the literature, it's clear that there is still no easy answer explaining why.

i for one am glad that this subject is starting to get proper attention, both in the medical community and here on the boards! it is so important to be able to judge *if your child* will have a net-benefit from a particular surgery, and also which surgeries have the best "odds" for improvement.

kate

(please forgive 1-handed typing...)

[njbirk]

Kate,

We understand 1 handed typing!
It is good that this is beginning to be examined in the literature and that we can discuss this on these boards. There is much that still needs to be studied. With such a variation in extent of injury, there are so many variables, which makes comparison difficult.

To add something else into that mix is the question of how long these surgeries last. Do the releases and transfers last through a lifetime?

I've had 2 shoulder surgeries. The first was the Sever/L'episcopo surgery at age 10, which was basically just the transfers and releases. Then I had the mod quad at age 47 because the contractions were beginning again.

I did lose strength. But I gained range of motion and flexibility and those gains were worth the loss. It was the right decision for me, both times.

Nancy Birk
UBPN President

[admin]

Nancy, My feelings exactly!! How long will these surgeries last? Since doctors often say a particular surgery may have to be repeated as the child grows, it seems that no one can answer the question. I guess all we can do is pray for the best recovery whether naturally or surgically. Also I feel that every BPI child should be financially compensated for future medical costs!! This is a lifetime injury. OK, I'm done! (for now)

[hope16_05]

Just wanted to add that surgeries do not always last forever. I just had to have a surgery on my hand redone this past summer. I had the same procedure done just before I was 7. so it lasted only 11 year, well probably much less than that but I had my surgery redone 11 years after the first.

I dont think are long term studies yet on most of these surgeries as to how long they last.

Amy

[admin]

Regarding surgery and how long they last has a lot to do with proper therapy, stretching and strengthening doesn't it?
I would believe that any surgery is a loss if the parent does not get their child engaged in formal therapy for at least a couple of months after any surgery. I am uncertain whether every surgery would apply to this belief, but I highly suggest several months of formal therapy to any child who just comes out of surgery, even if the doctor does not recommend it for that long.
Ingoring the fact that a child had surgery can easily make things fall backwards. We have to remember that anything that was "fixed" in surgery needs to be watched for a lifetime in most cases. If we notice something not working as well as it used to, then lets get back into therapy and/or start working to fix the problem. We can't just watch it get worse while hoping it will get better with time.

[njbirk]

Good point, guest, that could indeed be one of the variables that needs to be a part of any evaluation.

As the body changes and ages, these are also factors that must be considered as well.

Nancy

[bugsntazz]

Hello,

My BPI son is now 7 years old. He had a partial Mod Quad at age20 months. We were told that he would loose the behind back function but he never had that so it was not an issue. He was actually scheduled for a full Mod but the Dr. only did a partial as they said that is all he needed. The Mod quad helped him tremendously. Surprisingly, he has gained new function at age 7 years. The other day, he put his BPI hand in his back pocket. He can go midline and he can go across his chest. We have always maintained OT and PT. We give him a break in summer but put him on a swim team which he likes. That is like more therapy for his arm. After Mod Quad, he had bicept lengthening at age 3. That has helped his contracture in his arm. It did come back but it is not as bad as before. His arm does look more normal. He does have some shoulder issues, but 3 doctors have said that they do not want to do anything as he has high function and no pain. His collar bone sticks out of his skin. Sometimes you just gotta go with your gut. My son was scheduled for Bone surgery at TCH right before the Dr.s seperated. I kind of sensed that and did not want my son to go through surgery when there was turmoil. We cancelled the surgery. Increased his PT and put him a swim team. He practiced for 1 hour every day for the entire summer. At the end of the summer, we visited both Dr.'s again but this time at seperate locations, both agreed he no longer needed bone surgery. I then took my son to another DR. who also agreed. So, get other opinions, way your options, and listen to your gut.

[hope16_05]

The reason behing having my surgery redone was too much use and over time and growth what they did in my hand had stretched out too far to be useful any longer. We tries OT for almost a year before surgery to try and fix the problem with out another surgery. Although strength was gained motion was still not there. After having my surgery redone, the strength is decreases but the motion is back, so now it is more therapy to strengthen.

Hopefully most other surgeries are not like mine in the fact that use and growth cause them to be ineffective.
Amy 19 ROBPI from MN

[admin]

Amy,

You are a great asset to this board. Can you tell me what type of injury you have or how severe your injury is? You are helpful to so many. Thanks to you!

Guest

[hope16_05]

Guest,
If only I knew how severe my injury is and what type. I have not been able to get this info as of yet. Still working on it though. All I can tell you is the function that I have now after 4 surgeries. I can reach up to my forehead actively, passively I have full range however my scapula wings out a lot. I have pretty good use of my hand now after my surgeries, before my first surgery I had little to no functional use of my hand. I can not reach behind me actively, passively I do have the range. Can not put my hand in my pocket whether in my jeans or on a sweatshirt/jacket. Basically it is just a helper, does not seem to do things on its own, well except hold things. I can hold things in my hand, and when some thing is missing, thats where to look because I have limited feeling in my hand and arm.
As I get older I am still gaining new function but also encountering some prooblems too. Pain is becoming more often and now part of my back goes numb because the muscles are too tight.

Hope that gives you some idea, sorry I cant be more specific as to which nerves were injured. And to what extent.

Amy 19 ROBPI from MN