United Brachial Plexus Network, Inc.

Hi,

We were in a situation just like you. DD was told she needed the mod quad last year and we were going to do it. However, at the last possible minute another doc w/the same hospital told us that it was not too late to wait and continue therapy.

We walked out w/minutes to spare. We went back this year and they said continue therapy still a 50/50 chance of needing some surgery. We go back when she is three.

Trust your mommy instincts. Modquad can take away some function. I don't know for sure if we did the right thing but I feel comfortable w/my decision.

yes, the mom instinct has saved more than one child from unneccessary surgery!

Dear Cindy, I just wanted to say thank you for your advice and explanation on all my questions. I have the okay for surgery but I am worried. One point of interest for me was to see that you didn't only do surgery but have tried the chiropracter, acupuncture, etc. I read an artricle in the BP magazine that I just got about a family that went that route and how much it helped rather than surgery to start, although they did end up having surgery.
How 'bout you? Have you found those other therapies have helped and made a difference? What do you or anyone else recommend? What more can be done at home?
The other question I have is about crawling? My son now walks. He is 1&1/2 years and is doing pretty good with it. But should I still continue to encourage him to crawl. He combat crawls, never has used his right arm or shoulder to bear weight on his body?
Someone said climbing was a good thing as it helps to impact the shoulder, correct? Also weight bearing, do you mean wearing weights and having more to have to work with? Or having to press (meaning crawling) on the shoulder.
So Cindy, I just want to ask, if you could make the decision again, would you have done the operation, Mod Quad?
You said that there are hospitals that do anterior capsule release? Where are they and how successful is it? Are there any families out there that have done this and was it successful and what are the results from it?
Why does Mod Quad sometimes cause less mobility rather than more? Is it just the child or is there a reason why which can be avoided or talked about with the doctor?
Besides a doctor in Orange County, California, are there any other doctors that would be recommened to have a second or third opinion of in Southern California?
Has anyone ever gone to Shriner's in Sacramento and been seen by Dr. James? Any operations done by Dr. James and Dr. Henitz together? Any comments on that?
Thanks so very very much! Renee
Thank you so much friends for all your help with my questions.

Sincerely, Renee

Renee,
No problem with answering questions, that's why we're all here to share our experiences and hopefully help someone along the way. If you're talking about this past issue of Outreach that was me writing about our experience. Yes we do include a variety of treatments and every time I hear a doctor say how remarkable his recovery is and how his arm should be frozen at a 45 degree contracture but it's not makes it worth it beyond words can say. I will continue to use alternative treatment for Matthew I feel it has enhanced his recovery greatly. When we saw our neurologist at his bpi clinic he and the ot were amazed that Matthew's arm was not contracted, they said a vast number of kids they have seen after mod quad end up with a bad contracture. When we went to see Dr. Kozin at Shriner's I decribed the extent of Matthew's injury then told him about the surgeries he has had he was not expecting the recovery he has.
We do a lot of lifestyle or play therapy at home and I feel stretching is very improtant. I also feel crawling is very important. What helps us is we get Melanie to crawl around on the floor and Matthew sees her doing it and will start. We play zoo or safari - pretending to be animals crawling around. The weight baring is probably referenced to crawling or anything that would encourage body weight to be supported by the bpi arm.
Honestly the one thing that I would change if I could go back is the mod quad, I would not have had it done. However I like to look at it like a learning experience to share with others. Now if another family is researching and inquires about the cutting of pecs and their child has a tight anterior shoulder I can share our experience and it gives food for thought to make an informed decision.
Anterior capsule release is when the front part of the shoulder is cut to relieve the tightness. If the humeral head is dislocated it should pop back into place then the shoulder joint starts to grow normally.
I spoke to a couple of families that had this procedure done at clinic and they have had successful results. Two friends of mine had this operation done a little while ago and so far so good. This procedure has been done for about three years and as far as I know there has not been a case of dislocation after it was done. I think Dr. Pearl in CA does this surgery. I'm not familiar with the CA area at all. If this is something you would like to look into, the hospital you choose should be able to give you a list of people who have had the operation done and are willing to be contacted about it. We have always volunteered to be put on the list to share experiences. Don't be afraid to call the families, sharing is how we learn.
Cindy

article by Dr Pearl about this http://www.aaos.org/wordhtml/anmt2002/poster/p350.htm