modquad--Opinions?

[StephP]

Just wondering what some people think of having Modquad done if child will be 20 months old? My son had primary at TCH 13 months ago. He has shown a lot of improvement. Can now bring arm up to about 80 degrees. We have scheduled the modquad to be done at TCH in January because the doctors there recommended it mainly because he is so tight. Since seeing TCH docs, I took him to a BPI specialist in our area who strongly recommended NO surgery for now. His reasons were that he has great shoulder development and we'll still see benefits from primary and that the baby is too young for Modquad. Our neurologist also agreed to no surgery for now. I'm on the fence now.
If you had your child get the Modquad around this age, did you think he was too young? What are the advantages/disadvantages of doing it now versus later?
I'm also going to try and get a hold of Texas to ask this question, but was wondering what you all think.
thanks!

[Julie-work]

This is based on my daughter's particular situation...
My daughter has a severe ROBPI. She had the nerve grafting surgery at 5 1/2 months and the mod quad at 13 1/2 months. While the nerve regeneration is a very slow recovery process, we did see some signs of improvement before the mod quad was suggested. However, my daughter's shoulder area was extremely tight. She could not lift her arm up past shoulder height and we could feel the tightness when doing her passive ROM exercises. Since the mod quad, my daughter's shoulder is not tight and it (along with e-stim to strengthen the muscle) has allowed her to lift her arm above her head. I don't think she would have been able to do this without the mod quad. It was explained to me that TCH found that by doing the second surgery earlier, rather than waiting 1 to 1 1/2 years after the first surgery, that recovery processes coincide with each other. In other words, when the nerves reinnervate the muscles, the muscles are not tight so they would be more likely to function properly. If the tightness remained, the child would learn compensatory movements which are harder to un-learn.

[francine]

Maia had the mod quad at age 19 months - she had primary at 7 months. We are also glad we did it early on - now that she's 4.5 years old I understand completely about 'learned compensatory' movements that are hard to unlearn. You'd be very surprised! The other problem is that without full range of shoulder flexion - the glenoid is not actively getting shaped correctly to be able to hold the bone in. The glenoid is flat and the humeral head is pointy and the range has to be there in order for it to be shaped from the movement itself.

The other thing I have to add - outside of the physical plusses - there is an emotional plus of doing surgery younger than older... Maia does NOT remember (consciously at least) her primary and mod quad BUT she remembers everything about her capsulodesis at age 3.5.

-francine

[TNT1999]

Nicole was 10 months for primary and 23 months for the Mod Quad. I feel that the age of the MQ was appropriate for Nicole. I know of some children / babies having it done much younger, but I don't know if I would've been okay with that, esp. in cases where the injury isn't that severe (although that wasn't the case with us as Nicole's injury is severe). Anyway, looking back, I wouldn't have wanted the MQ to be done any earlier or any later. I think that Nicole had the surgery at an age when she was young enough to retrain some of her habits. Some drs recommend waiting until 3-4 y.o. Well, I can see that at 3 1/2 y.o., Nicole has really developed some compensatory habits and "her own way" of doing things. I know it would be harder to break those habits now. Also, as Francine brought out, there are the emotional aspects of surgery. Nicole was much more aware of everything going on with the Caps surgery that she had at 32 months than she was for the MQ at 23 months old. If the dr recommended to us doing it sooner rather than later, I would likely opt for sooner unless there was a lot of progress being made and / or the injury was mild. I would ask the ?, if by waiting is there a chance that the surgery might not be needed at all? or is it pretty much inevitable? Another thing is that from what I've heard you might continue to see benefits from surgery for years, so at what point would it be okay to have the MQ according to the other BP Specialist?

Are you in a position to see Dr. Waters or some other BP Specialist for a 3rd opinion? Sometimes that's helpful when you have two conflicting opinions. I know that Dr. Waters is known to be conservative and I think he might even be doing the MQ type of surgery (his isn't exactly the same, but similar) at an earlier age now from what I've read of different patients who go there.

I know these are difficult decisions. I hope you can feel comfortable with whatever you decide.

-Tina

[Karen Hillyer]

Gavin had primary surgery at 6 months and a subscapularis release ( sort of mod quad) at 2 years
He regained great movement from the sub scap release and all went well until he was 7 years old, when his shoulder got tighter and tighter and tighter
he ended up having a muscle transfer last year aged 9.5 years and also another subscap release where they had a lot of scar tissue to remove from the original sub scap surgery.
There are still no long term guarantees with these surgeries and what works now, may need more work later.
I just thought I'd share our experience with you
Karen

[Alice]

My son Joshua did NOT have the primary but did have the mod quad at 3 years old. He got great movement from it and am so glad we did it. They have recommended another surgery for the last year, but I am holding off for now. Good luck to you.

[m&mmom]

Steph,
Matthew had mod quad done at 18 months. In April TCH said schedule mq, in June they said wait a year, in May his neurologist from the bpi clinic in Philly said wait, in August both TCH and his neurologist said to do it. His arm was so internally rotated that he was starting to lose function. This was the deciding factor for us. You need to do what is right for your family and if you need a third opinion go for it.
Matthew had a great recovery from both his surgeries. By the next day he was back to himself and required no pain medication by the time we left the hospital.
If Matthew wasn't loosing function and his neurologist would have said no and TCH said yes we would have gone for a third opinion. Luckily everyone including all of his therapists agreed he should have mod quad done at the time.
Cindy

[Stacey]

TCH recomended mod quad for Nicholas at 19 mos. He had great return and function but definite limits. He seemed to cont. to make slow progress so one week prior to surgery we talked to Dr. Nath and ended up postponing it until he plateued. However he ended up needing the surgery anyway, and they still needed to do all the parts of it when he was 3 years old. It was much harder to have the surgery when he was older in my opinion. He had the caps at 4 1/2 and definitely remembered the previous surgery at TCH so that was very hard on him and us. And the compensatory patterns Francine talked about are well learned at this point and he still needs reminding. We are constantly trying to reeducate his muscles. He had to hold his arm in a certain way prior to his surgery. Now he can do it without compensating but does some because he forgets. For those two reasons we would have done the mod. quad earlier if we had to do it over again. Our personal opinion only. Good luck in your decision it is always very hard. Stacey

[sharlon]

marlin had quad at 13 months too. i think the earlier the better she did really well coming out of the splint and had more range immediately.

[StephP]

Just to let you know that Dr. Nath e-mailed me a response(very nice!). He said that the earlier the modquad is done the less risk of the shoulder becoming dislocated. Not to say that it might not happen anyway (shoulder dislocation). Their preferred age for the modquad is 12-14 months.