United Brachial Plexus Network, Inc.

I know that there is so much that can be gained from the mod quad, but does anyone know what can be lost, if anything? Has your child experienced or have you heard of another child actually losing any movement that they had before the surgery, and if so what was it? Just were told our son needs the mod quad and we are making an important decision. I just want to have go into it with more realistic expectations. Thanks so much!

This is something that you really have to ask your bpi specialist because each child is so different.

good luck,
francine

btw there's a list of questions a bunch of us gathered together....may be helpful for you,

http://www.injurednewborn.com/maia/drquestions.html

Hi Francine
I will check out the questions. Thank you. I tend to be the lady of a million questions. The docs at TCH have been so great at answering my multiple pages (seriously - usually at least 2 full pages) of questions, which I have GREATLY admired, since docs usually run in and out. Also, I did ask about any possible loss of movement and was told there wasn't any risk of that happening. I just thought that I remembered reading a few times several months back that a few children did have some loss of movement, function, after the surgery. I may not be remembering correctly, but I just wanted to learn more. Thank you! Also, hope you know how much your activity on this board means to all of us! Hope you are feeling a little better today about camp. What a scary time.

A very long time ago I remember there was a discussion about what the kids might not be able to do after the mod quad and I remember them saying they might not be able to reach into their back pocket with that hand. And I remember one parent that complained to the doc about this with the doc replying - "can he do this now?" and mom saying "no" and doc saying "well then he won't lose anything he doesn't already have"

Although it sounds kinda funny - I didn't write this to poke fun...but just a reminder that if a child can't do a movement now, after the mod quad some movements may be able to be achieved and some not.

Elisa it's great that you are asking the docs tons of questions....if you have any other questions that we don't have on our list that you think we should add just let me know! We're trying to make it as comprehensive as possible.

-francine

After the Mod quad Jameson lost the ability to touch his thighs(either)and tummy with the palm of his hands, its hard to put his hand in his pocket now...but it was a good trade off...He does stand next to the wall and press against it to assist him in buttoning buttons...He never really could reach behind his back so that wasn't an issue for him. He still can't do that....He needs to have the pec release surgery done again but he still has better range of motion than he had before the first one. He can reach his hands and arms out wider(like for hugging)....Right after the surgery his hand was weaker but it came back within a few weeks of the splint removal...He still has tingling in his hand but we think that's probably a good sign.
Good luck to you....Please keep in mind Jameson was 10 yrs. old before he had the surgery done and it is better for the younger kids.
T.

Hi Elisa, I know that in our case, we got conflicting ideas from the doctor. In person we were told that the mod quad would definitely benefit her - improve her ability to raise her arm, suppinate, and so on and that she would have more movement. I then got Very specific with questions and that's when I found out more what she might actually lose. When I specifically said, "would she STILL BE ABLE TO touch her back, put hair in a pony tail, swim (which she loves), fasten up her pants, reach over the front of her (to do up a seat belt or something like that)...and so on.... that's when the doctor said, well she might not be able to do this or that anymore. When I later called and asked the same questions I was told that she would be "no worse off". I personally think that her not being able to swim (breast stroke, free style, ..) anymore would be worse off, or her not being able to reach across, and so on - movements she can do now that she might not want to risk losing in order for more movement in another area - - - what I'm trying to say is that my child's and my ideas of "no worse off" might be completely different than what the doctor's ideas of "no worse off" is. Since children are injured in different ways though I'm sure that surgery works in different ways for them and this surgery might benefit your son. Just please ask him specific questions about what might be lost so that you can decide better for yourself if your child would be better off or worse off with the surgery. My child is 10 so this plays a big part in the decision of what she wants to risk losing in order to gain. I hope this helped somehow. I know this decision is such a hard one - I hope that somehow the decision becomes obvious for you on what is the best for your son. Christy

Elisa,

I guess this must be very individualistic, reading Christy's note above I was very surprised...my son also loves to swim, and his mod quad actually helped him to swim more easily (greater range of motion) and with even more success.

Ian's mod quad at age three (at TCH) resulted in improvement in every single measurement. I had his therapist do both a pre-surgical and a post-surgical full evaluation because I wanted real numbers to document the surgery results (or lack of results).

His therapist at the time felt that surgery was not a good idea and let us know (gently) that she felt we were making a mistake. Despite her input, we trusted our instinct and went ahead with surgery, Thank God. The results of surgery were very surprising to our therapist, and she did admit that she was wrong and that surgery had been of great benefit to our son. I was very glad that I had made sure to have the pre-surgery evaluation done so that we could compare his progress post-surgery.

I understand that not every child will see the same results from the same surgery...in our case Ian's injury is to C5, C6, and C7, no avulsions. He had one large neuroma covering all three nerves, and his primary surgery did not involve grafting (they were not doing grafts for his level of injury at that time although I understand that today the surgeons see better results with more aggressive treatment). After the mod quad Ian was able to raise his arm above his head, boom, straight up, which was the most dramatic improvement overall.

That has been our experience, hope it helps in some small way.

Bridget

Hi there. My daughter lost a lot of she could do before surgery, mainly in strength. We are working hard to get it back. She had her surgery Thanksgiving week and we just started muscle strengthing. I have hope. Plus, she is 6 years old and she challenges us.
Jana

My son is 20 months post-surgical in Houston (July 2000). He is now 17 years old and is as yet, a long way from being a positive example of mod-quad success. I prefer not to post any additional details, but if you would care to email me, I would be happy to give you a more complete story that might be useful information to consider.
kaylinda@hotmail.com