United Brachial Plexus Network, Inc.

Well we got 2nd opinion from Dr. Waters (wonderful man) in boston today. As I expected (I was told he was conservative), he suggested holding off on secondary surgery for now b/c my 8month old daughters shoulder still looks ok. she is internally rotated and all that goes along with that (no suppination, winging, etc). However she has great range of motion, she can lift her arm above her head, bring her hand to her mouth etc. we have been told she has a mild to moderate BPI..We have Mod-quad scheduled at TCH for end of august. Who should I trust...the theory that the earlier the better for mod-quad for shoulder development reasons or the theory that 50% of children in my daughters situation will not need surgery and will correct on their own. I am so afraid of shoulder malformations and the repeated caps surgeries.

can anyone share their experiences with me? I have read so many speak of the wonders of Mod Quad but my daughter already has great ROM. Will Mod quad be more preventative for her rather that give her more motion? If you havent had any surgeries so far, plse share how you are doing.

Thank you in advance for your help.
Terri.

I guess you need to know how many children who had mod quad went on to need caps, from what I read here it's quite a lot, so the mq won't necessarily save your child from caps and might reduce her ROM. If the impression here is wrong, and most of them avoided caps b/c of mod quad, go for it. Remember, the long term effects of these surgeries on the shoulder joint or anything else are not yet known, they haven't been done for long enough. Good luck with your choice.

Our son was older than your daughter when TCH recommended the mod quad, he was 20 mos. He had great return and function and was right on the edge of needing it or possibly recovering more on his own. We chose to wait, but he soon plateaued anyway and they ended up doing the surgery one year later. He also needed the caps after that. I probably would have done it sooner because of his shoulder. Maybe if we had done it sooner he may not have needed the caps. I can't look back now we obviously did what we felt was right for him at the time. We also find it is hard to break their old habits of how they do things and hold their arm. My son does great now and has super return and use of his arm, but I still find I am cueing him with certain things that are clearly habit. Something to think about. This was our experience only. We will actually meet and hopefully get an opinion from Dr. Waters this weekend at the BPI picnic in Boston. We are almost 1 year post caps and 2 years post mod quad. Good Luck with your decision. Stacey

Our daughter, Hannah had the MQ when she was 11 months old. She had good ROM and could get her hand to her mouth. She was slightly internally rotated. We based our decision on the shoulder malformation theory. I wanted her to have the best chance at having her shoulder grow and develop correctly. When she was internally rotated her arm at rest didn't always rest in neutral, therefore, her ball and socket couldn't grind out correctly. She is 18 months old now, we were told that she doesn't need anymore surgeries. You would never know she was injured at all. She has 95% recovery. The only thing she has a hard time doing is putting her hand behind her back. I am happy we did the MQ when we did. She hasn't developed too many bad habits. She is actually outgrowing some of them. I think that you also have to feel confident in the decision that you make, and know in your heart that you made the right decision for your child. No matter if you decide to wait or go ahead with the surgery.

Lisa

Well, I think that's a tough one to answer. My son didn't have mod-quad till he was 2 and a half. He had caps at 7. That whole shoulder mal-formation theory is very compelling to me, but at the same time, I can't see how an early mod-quad will really help with the shoulder joint because you're also battling decreased nerve supply to the shoulder.....So is any of it preventable? I'm not sure. I see in theory that mod-quad will help normalize some of the shoulder movement, which in turn leads to better formation of the shoulder joint. But, if your daughter already has great range of motion, what will the mod-quad do for her that she can't do now? With my son, it was clear. He couldn't lift arm above chin, no external rotation etc. Someone who said they've just not got all the data yet is right. I think they're all learning even now what's helping and what's not. They weren't doing caps (I don't think) 7 1/2 years ago when my son was born, and I don't know if the mod-quad will necessarily prevent caps in the future. You will come up with a decision that you're comfortable with and don't look back. No second guesses. Because nobody has all the answers right now. Unfortunately, no doctor can tell you what the future holds. It's all guess work.

Hello,
Your daughter sounds very much like my son's injury. He had primary when he was 9 months and then we were told he would need mod quad around age 3 or 4. Well at the post op check up TCH told us that they had changed their protocal and were doing the mod quad earlier to avoid the problems with the shoulder joint. My son had pretty good motion before mod quead. He could get over head but it was a battle to get it up there. He could not reach behind his head, ie touch his ear. His shoulder was internally rotated. We did have mod quad at 20 months of age. My son is now 5 years old. We just had a check up at TCH. DR. Nath looked at my son's shoulder and told us that my son was one of the very first to have the Mod Quad at the earlier age, he was the first they switched for younger age. TCH was very impressed with his shoulder. He does not need Caps and stated that his shoulder is looking very good and strong. At first, I was relunctant to do the Mod Quad when he was 20 months but I looked at it as a chance for him to develop a better shoulder than if he did not have Mod Quad at the earlier age. So far, he has avoided caps. MY son had ruptures of c-5,c-6, and c-7, nerves. Today, he has pretty good function and it is hard to tell he has an injury. Good luck in your decision .

This is a tough one! My son also had what was considered to be better than average range of motion. and yet, he still couldn't raise his arm above 110 degrees, and could not abduct to the side very well. We decided to do MQ at 18 months (a year and a half ago). I consider this the best decision I have made to date regarding Matthew's recovery. Even though he had great initial recovery, MQ helped him get so much more. I too struggled with the question of whether of not surgery was the right thing to do based on the returns he had already made. But looking back at the pre MQ videos now, I can't believe what I thought was "great recovery". No doubt in my mind that the functional returns he has made were well worth the surgery hell. We have been told caps will not be right for Matthew. His shoulder is dislocated. I have no doubt that the shoulder would have been worse had we not done mq due to the severe internal rotation tightness, which was significantly relieved. I don't think mq can totally prevent the shoulder dislocation issue, but even without that, the internal rotation and tightness just gets worse and worse, and in our case it was relieved through mq so that many new movements/functions were gained.

This is an emotional issue. I finally had to separate out the caps/dislocation issue from the internal rotation tightness/decresed function issue. Good luck with your decision.

Cathy

When in doubt, get yet another opinion. Each opinion gives you more to think about and more things to question. Don't stop researching and asking until you have your answer.

These decisions are so very hard to make! But you will do what's best for your child, no matter what the conclusion is.

big hugs,
francine

It's so very hard to decide what to do. I'm just going to let you know what we went through just to give you some info. Matthew had mod quad at age 18 months. His arm was very internally rotated. We were told that with mod quad this issue was resolve and caps would not be an issue until he's 5, but he was not at risk for dislocation. In March we were told that Matthew was dislocated and needed caps but they didn't want to do it until he was 3. We would have to wait a whole year. Also during mod quad his pecs were released which was supposed to releive the tightness. We're almost a year past mod quad and his pecs are tight. Our team feels like they're tight because he's still internally rotated and that has a hand in pulling the pecs. His pt has done myo-fascial release on him on the anterior shoulder. When she does this his pecs loosen immediately. We researched different types of surgery and found a surgeon who performs an anterior capsule release. We feel this will benefit Matthew at this time and looking back I wish I never would have allowed his pecs to be released. We also see a conservative neurologist who has in our case always recommended surgery for Matthew but not for others who TCH has. Matthew started losing function and that's the only reason why we had the mod quad sooner rather than later, otherwise we would have waited. Your daughter sounds like she's doing very well.
Cindy

Terri,

it's so hard to say, even based on other people's experiences because each child is different, their injury is different, the age at which they had surgery and exactly what was done... you see?

Francine is right, go get yet another opinion.

Is there any chance you could come to the UBPN camp and reschedule the mod-quad for after Labor Day; There will be a medical panel (see post re: this topic on all message boards--especially the camp message board) and a clinic and you would get a great deal of information.
Then, hopefully, you will have all the info you need to decide on to keep or cancel the surgery apt.

Peggy