third surgery - still no luck!

[Amy Clark]

Hi, everyone,

It's been so long since I've posted. Lexi had her third surgery - a muscle transfer to her deltoid (three muscles actually). She was in a spica for two months - not fun at all. Anyway, it's been six months now and still very little progress. Has anyone had this done and seen more recovery later than six months post-op? We do a therapy regimen with her at home everyday as well as her weekly therapy at Hasbro Childrens. I would think things would be a little better by now. She still has virtually no deltoid use at all. Thanks.

Amy Clark

[hope16_05]

Hi Amy,
I dont have an experience with this but was wondering if you would share the procedure that was done on Lexi?

But mostly I wanted to wish you both a great recovery and I hope that you start seeing lots of progress ASAP!!

Hugs,
Amy 20 years old ROBPI from MN

[mlynn]

MAY I ASK WHAT A SPICA IS AND WHERE YOU HAD THE SURGERY IF YOU DO NOT MIND? GOOD LUCK

[Amy Clark]

Hi, sorry it took me so long to respond - we have been out of town. Lexi had her trapezoid stretched down and literally screwed into her deltoid, with the hopes that the deltoid would be assisted and allow her to lift her arm. She also had two muscles in her back transferred to a nearby location to allow for external rotation - that particular transfer seemed to work. We do see a little more external rotation. But we still see no deltoid movement.

The surgery was done at Boston Children's Hospital; Dr. Waters was the surgeon.

A spica cast is most commonly referred to as a statue of liberty cast, where the child's arm is raised above his head, much like the statue of liberty.

Amy Clark

[Ally's Mom]

Amy -

I can imagine the frustration you are feeling. I am new to the message board...how old is Lexi? What were the first two surgeries she had? Did you have those at Boston Children's as well? Our daughter, Ally, is to have her first surgery within the month...we are just debating on surgeons now. I hope that Lexi continues to improve and if I read or hear anything about your concerns, I will definately let you know. Take care,
Andrea

[Amy Clark]

Andrea, you are fast! Lexi is five years old now, but it seems like she was born yesterday to us, it's gone by so fast! Her first two surgeries were nerve transfers, both done by Dr. Waters at Boston Children's Hospital. He is a fantastic doctor - best bedside manner we have ever encountered. His success rates with his brachial plexus surgeries are outstanding, and we continue to back him and bring our daughter to him regardless of the outcome with her particular situation. Specifically, none of her surgeries have been truly successful. Her injury was quite severe. We do therapy at home with her every day, and continue to see him periodically. He has told us that he will not intervene surgically again until she is quite older. Good luck with choosing a doctor, we do recommend Dr. Waters.

Sincerely, Amy Clark

[Mare]

Amy what was the surgery called??? frankie had the mod quad in Nov and still can't raise his arm up or out when standing but on his back he can move it all over the place Dr Nath said it could take up to 2 years but then there is that slim chance that the deltoids won't kick in its a wait and exercise kind of thing but Frankie is getting impatience also.

[Amy Clark]

Mare - Dr. Waters doesn't name the surgery (I think they all have their unique style), but I think it is closest to the mod quad. I am very glad to hear that it could be two years! We were getting a little impatient for results. Dr. Waters even said he had expected her to be a little farther along that this (we saw him yesterday, April 2.) I appreciate your reply - thanks.

Amy Clark

[momgg1]

It is ironic that you posted about results over time. Grace (ROBPI) had the mod-quad 4/05. She has struggled w/ putting her hands on her hip. I began noticing it in dance 9/06. She is 5 years old and it broke my heart to think this might be something she would be self conscious about in the future. Last night at dance, she put her hands on her hip w/ no hesitation. She used to swing it in to "catch" her hip and had difficulty holding the position. My point being that two years later we are still seeing positive effects. Hang in there...I know it seems like eternity. I am so glad we decided to do the surgery. It is the only surgery this far and I pray it is it. She struggles w/ a bicep contracture, but is otherwise doing well. Take care, Diane