United Brachial Plexus Network, Inc.

Okay everybody.
I have been going to alot of doctors lately for my BPI and the significant scoliosis they found in my back. Well I went to Dr. Munin in Pittsburgh on Wednesday. He specializes in botox. My mom wanted to see if it was a possible choice to help my arm. Well make a long story short... He said that he didn't recommend botox because my muscles weren't necessarily "tight". So I started asking him all sorts of questions to see what his answers were, since every doctor seems to have different opinions on things. (And by the way he was familiar with BPI) So he told my mom and I that he thinks that the Mod Quad surgery has limited my arm from movements he believes I would possibly be able to do without it. The major reason he thought this was because how hard it is for me to raise my arm over my head. He was looking at my muscle, and he said that he believes what ever they did during the Mod Quad has limited that motion. He thinks that whatever muscle they tied back causes my scapula to move in a sideways motion instead of turning up along with my arm.
Well he is now the second doctor that has said he believes that the surgery was not the best choice, and still he cannot tell me whether my scoliosis is related or not.
Anyway, Dr. Harry Hoyen from Cleveland Clinic said some of the same things.
Does anybody have any new info on this?
Is this surgery now becoming not recomended?
Or, do some people still believe that it is better to have it done than to not?
Sarah/13/ROBPI

I have heard this before (just parent discussion, not from a doctor). My daughter had the mod quad and I've decided I'm not sure I would do it again.

At the time I was thrilled with the results. Her arm was completely frozen at the side of her body and after the mod quad she had full range. Unfortunately, we followed up with the surgeon three years after and he told us that she should have a repeat of the surgery as she was tightening up again. I said NO WAY! (I should add that we did all physical and occupational therapies, range of motion, estim, etc.. So it wasn't because a lack of effort or ignoring the arm.) I brought up on the message boards at the time -- was the mod quad meant to be band-aid or a solution. I was led to believe it was a solution but I now believe it to be a band-aid.

That being said, at the time it was the best decision for us and I can't second guess myself now -- it would be a losing battle. I do feel there are less invasive ways of achieving similar results now but as with everything to do with bpi treatment, it is a personal decision and there is no defined treatment protocol. You have to decide what is right for you and your family!

Best wishes!
Kim

I agree 100%. At the time the surgery was the best option for bpi. My family thought it was great, I did improve greatly. Although like you said, there was probably less invasive surgeries that most likely could of helped me get the range of motion I have now. I also believe that with the mod quad, it took away certain motions you could of had, in order to help gain more important range of motions. At least in my opinion. But, I guess you can never know for sure. You do what you think is best.
~Sarah :]

HELLOOO SARAH!
I am soo glad you posted! It is good to hear from someone your age who has been thru this & hear it first hand!!!!
HUGS,
"gramma"Carolyn J
LOBPI/72