United Brachial Plexus Network, Inc.

by the way - I think this is a great discussion..I love reading everyone's VERY VALID viewpoint. We're all different and isn't that great...life would be very boring otherwise.

Just to throw a couple of more ideas/views into the pot
In Europe/ UK capsulodesis surgery is unheard of and TCH is the ONLY hospital who does a "Mod Quad" procedure - this is a term only used by TCH and is not in general usage amongst BPi surgeons.
If I am correct in thinking that capsulodesis is only performed to correct a dislocation ( this is information I have gleaned from this thread) then possibly the reason we don't have it, is that we don't have many children who suffer dislocations.
Also in our group of 1000 children we have only encountered at the most 2-4 children who have complained of pain in their arms/shoulders.
just another view point!
Karen

Sorry, I just realised I may not have made myself clear on one point - it's only the TERM mod quad which isn't used anywhere else, the surgery is performed but it is called something else, just to clear that up
Karen

Okay, so here are my two cents!!

Yes, I think the surgeries are "experimental." And, I went into this with my daughter not really minding their experiments. At 4 months she could not move her arm. TCH was offering her an opportunity to move her arm. As her guardian (and with my husband) I decided to take the risk. There is always risk. She was one of the earlier primaries. I think it is why she has responded so well. Did they learn from her? Yes. She had mq at 14 months. Also on the early side-then. Did they learn from her? Yes. ]
I know that TCH is chronicalling what they do and how their kids are doing. I know that this has brought about a change in protocol. How many times have we seen people say "if it were not for those of you who have gone before us...."? Well, Juliana is only 3, but she has been "experimental." Things have changed ALOT in only 3 years. More younger kids are having primary. More younger kids are having mq and the splinting protocol has changed. With input from me and other parents who opted for biceps, more or fewer kids will have biceps surgery. The protocol for caps splinting has changed.
Luckily for us there is a constant learning curve. With out that learning curve there would not be surgery for any of our kids. And, there would not be a way for doctors ANYWHERE to know if a child should be turned away from a surgery.
When I saw Dr. Nath in NY we talked about all of the changes and how quickly they are coming. And he agreed that it seems to be happening quickly, all of a sudden. And, that doctors who previously would never touch a kid for mq-like surgery under 3, is doing it now. They can do that because they publish and share.
Remember: We all had babies with "experienced" birthing professionals--and look at the conversation we are having now!!
I am not encouraging quackery, but if you had asked me a year ago if I would consider botox, I would have laughed you out of the room! Now, I have researched and am going to see our ped neuro, and have found a local doc who does it. And Nath wants it too!! I know that he wants the best for all of our kids, but Juliana becomes a test case. I know that. We should all know that.
We learn from each other, the docs learn from us, we learn from them. Thank god for all of this. Without it we would all be in the dark.

Talking about Experimental. I'm having a very hard time deciding whether or not to have the Caps Surgery for my daughter. Dr. Nath recommended she have the surgery, he saw her at the SD Picnic in California. Now I have two Ortho Dr.s (one of them performed her muscle tendon transfer) telling me that her glenoid is to small (about 1/4 the size it should be)and the chances that the Caps surgery won't hold are pretty high. They recommend the Osteotomy. I e-mailed Dr. Nath (who I really think is very good) about the glenoid issue presented from the Ped Ortho Dr.s here and he told me that at this point in time they don't have enough data that shows a correlation between the size of the glenoid and the success of the surgery. She still may need the Osteotomy, but that they (TCH) support our decision regardless.

The "Modquad", "muscle/tendon transfer", whatever each hospital decides to name it, has been around for a very long time, it's only in the past years that it has become new to BPI patients along with the other surgery's involved. Our Pediatric Ortho Surgeon here in SB is going to a conference in December that will discuss with other Dr's new procedures just for the OBPI patients. Unfortunetly our daughters surgery is scheduled for Dec 3rd, and we need make a decision soon. We're off to see another Dr. in LA who has more experience with the Caps surgery in OBPI patients for his opinion.

I just hate to put her through another surgery, knowing that she may still have to have another. As Dr. Nath told us, there are no guarantees with the Caps Surgery, as every child is different.

Okay, now you will be blessed with my two sense. Eveyone here is accurate....but my feeling is that all surgeries are experimental. Three years ago when my son had Mod Quad, he was then the youngest or one of the youngest to ever have it this early. Dr. Nath was upfront and honest and told me this right to my face. I appreciated this so much. I told him that he was the doctor and he knew best....( I think that I said this before....and guess what my son was born with and ropbi.) My husband and I feel that we did my son a great favor since he got so much recovery from MOD QUAD. Just my opinion. However I feel that there are still alot of questions that are remaining....and I think that we did Primary and Mod Quad because that is what was best for my son....and that is what our heart felt we should do. As for Bi-ceps and Caps....I have no idea which way we will go with this !!!

Just a thought about the two villages where some kids had surgery and some didn't-just because the children in the second village MAY HAVE had less recovery doesn't mean they 'did poorly'. Many of the adults posting here had no surgery and I don't think they would like to describe themselves as 'doing poorly'. They just do things DIFFERENTLY.

Two villages - one village's kids being treated surgically and the other village not being treated. So - one doctor trusts in his treatment and the other doctor basically tries to disprove it...so kids went without treatment and did poorly. So I wonder - how could this doctor sleep at night? OK - yes so our kids benefitted by this because it proved to the world that surgical repairs would make a difference... but we learned this at the COST of what?these children's lives in that other village. (and quite frankly - why didn't they just get rid of the doctors who were injuring all those kids???) See why I have a problem with this?
My kid was in the village not treated surgically. He does quite well, as a matter of fact he does everything any other kid does and doesn't seem to be bothered by the fact that his arm is a little weaker than other kids. I don't believe he would have benefited and because no one could prove he would, I wasn't willing to make him a guinea pig, hooray to all who do. Experimentation will bring knowledge, but I am just not willing to make my child an experimental model. Studies are and should be important. Without studies and statistics this surgery is really just experimental and TCH and others should be doing them for free. Medicine is not an exact science, so to say that not choosing surgery provides a bad outcome is not fair ball playing and quite frankly, Francine, I sleep well at night and so do my child's doctors.

At 4 months she could not move her arm.
My son also could not move his arm at 4 months and today at age 4 the untrained eye is unaware he has BPI. Good news, great news, no surgery, just good old fashioned therapy. I just think that people should be wary to embark on possibly life altering surgeries without good outcome studies published, which to date despite all the information gathering TCH seems to do, does not exist and if it does I want to see it. I have been waiting for it for 2 years. I am happy that the surgery option has worked for many, but lets hear from some who haven't been as successful or don't they exist here?