Mod/Quad Surgery 6yr first surgery

[Mamacita]

My son Benjamin is scheduled for Feb 5 at TCH. I still have reservations. We will meet with the Dr 2/3/03. I have read so many replies of mod/quad and the losses initially after surgery. My son is highly functional but his shoulder is turning in more even with weekly ot. Of course people now notice his sloping shoulder and weaker looking bicep. His elbow has the give way bend and he has limited ability to turn his hand. I am worried that he is as functional as he will ever be and that surgery might limit him when he was not before. Any words of wisdom, experiences. I will discuss this with the Drs but real life exeriences mean more. thanks for you help Carol

[admin]

My son is 20 years old and has never had any surg. We visted Texas 1999 and were looking into the mod/quad surgery, they said that he was a good canidate. We thought long and hard and decided against it. His shoulder also slopes can not turn his hand and can not raise his arm above his head. He does have a terrific bicep!! We have spent many years of ther. and 99 was the first time we ever saw anything about surg. We have recently started TES....the therp. was very excited since my son has never had any surg. and all the musceles and firing, some very weak but firing is a good sign. My son has some limit in his range of motion but with a little stretching he gets quite a bit more range. He has been very fortunate not to have any shoulder problems. I do not know if surg. would have been good for him.....I hope we have made a good choice...We will be going to Texas 25,26 for the TES workshop at childrens Tex hospital....I am hoping to light a fire under him he does'nt quite see the point to do the range of motion exc. if he can't even lift his arm by himself( he does have point) but he was ver excitied to try the TES and he has been doing well with it....we are not sure what to expect...but we have heard of many feeling that it has helped and our goal right now is to try to avoid problems (shoulder) in the future. There are some things that have been hard to do but he has managed quite well, he swims (I wish he would do more he did alot when he was younger) he plays tennis and boy he has a powerful serve! many have questioned his one handed serve...but its legal!! he bowls, snow skis, and many more things! Well good look...

Lucille

[francine]

Hi Carol - it takes 5 to 7 months after any kind of surgery of this kind to come "back". They cut a lot of muscle and tendons and it needs time to heal and then there is immobilization and it takes time to come back from the weakness that this causes. I think you have to look at the outcome and know that there are steps you have to take in order to get to the outcome. The outcome is great and if you look forward to the outcome, the time getting there won't be as painful. I believe that with Maia it took a whole year for her rehab...I remember distinctly at the one year mark thinking that it really did take a whole year but what she got after that point was just fantastic.

You have chosen the largest bpi clinic in the nation - they are extremely devoted. Last year alone they did 700 surgeries. Your child couldn't be in better hands!
(but I'm seriously biased!)

Make an appointment with Child Life for a pre-surgery tour - I heard that this is a great service!

good luck,
francine

http://www.injurednewborn.com/maia/homepage.html
http://www.injurednewborn.com/maia/travel.html

[francine]

Carol - I took Maia to school and kept on thinking about your post....

the words you wrote that you are worried that this is as fully functional as he can be....

I have to tell you that I just came back from a seminar in Houston - and basically what I took away from it was that if your expectation is that your son is at his limit, then he IS at his limit. BUT if you can shift your thoughts to the possibility that he is not and see further into the future for real possibility for change and growth THEN he WILL continue to move forward.

When you are in Houston discuss with your doctor if an e-stim program is advisable for your son. A regimen of TES will help your son grow NEW muscle and an NMES regimen will help him strengthen it. With this technology there is a GREAT DEAL of hope and change that can occur. But YOU as him mom have to be committed to bringing him to that point.

About your reservations about the surgery.... I would highly suggest that you list each and every reservation you have and when you get to clinic discuss each item until you have a full understanding. (You can always say no to a surgery even if at the last minute when they ask you to sign the forms.) It'll be a lot healthier for everyone if you send your son to the O.R. with as much trust in the concept as you can muster. Of course you have anxiety and fear like every other parent does, but trust in the procedure is different.

I wish you the best and more ease at this time (if it's possible),
francine