Does anyone regret having Mod Quad/tendon transfer surgery?

[pepper]

I'm pretty new to forums in general and have only posted on this one a couple of times. The more I read the back postings the more I wonder if I am doing the right thing for my daughter.

I really trust the medical team (Dr. Kadiyala at University of Iowa) and he is recommending tendon transfer/muscle release for Brie at a very young age. I asked why it was necessary so soon and he said it was because of noted "loss of movement" that could jeapordize her shoulder joint if not corrected soon.

I really would like to know if anyone truly regrets having the surgery done.

Thanks!
Eve

[jennyinsandiego]

Eve,
How old is Brie?
Elizabeth had primary at 4mo and modquad at 11mo. I know you wanted to hear from people who regretted it, but I am going to but in 'cuz Liz was really young.
At the time she went into surgery (june 9th) she had some shoulder shrug and could raise her arm only in front to about 45 degrees. She is just now out of her splint and for the first time brought her arm across towards the front almost to midline. I cried. She still doesn't bend her elbow and only has a weak reflexive grasp but we only have forward to go.
Her original injury consisted of c7,c8, and t1 being avulsed and the middle plexus was just a mess. It is my understanding that the surgery is done at a younger age so as to give the shoulder as much chance as possible to get used "normally" and then hopefully be at less risk for problems later. It wasn't a tough decision for us, because she couldn't get much worse. But you need to trust that you are doing the best for your baby and research, research, research!
good luck, here's to peace in your decision,
Jenny

[Francine_Litz]

I have complete trust in Maia's surgical team. The Mod Quad done by Dr. Nath was miraculous for her. We have absolutely no regrets.

However..... techniques are different, experience levels are different, childrens injuries are different, children's abilities to heal is very different. - there are way too many variables for anyone to say - transferring tendons? yes that's a great surgery, it will work great for your child.

Keep on talking to your surgeons and even get one or more opinions. Don't stop researching until you have a true sense of peace about this.

it's hard stuff - truly hard stuff! I wish ou the best!

-francine

[m&mmom]

We went to TCH for their mod quad/tendon transfer surgery. The only thing I regret is letting them release Matthew's pec muscle. The muscle is still tight. After the fact we learned that the tightness is coming from his anterior shoulder being tight and once that's released in a couple of months his pec. muscle should loosen.
Cindy

[carron]

I have no regrets Thomas could not move his shoulder at all. At 15 1/2 months we had mod quad he is 2 and can raise his arm up and to see both arms come out to hug you is amazing....Best of luck