Any Mod Quad regrets?

[Heather B]

Just curious...Does anyone have any regrets having the Mod Quad surgery?

My 9.5 month-old daughter Clara (ROBPI) is scheduled for Mod Quad surgery Aug 12 (eval the 11th.) She seems to been gaining movement, albeit at a slow pace (she can now rub her eye...wahoo!) When we were at TCH in March, Dr. Nath wanted to go ahead with the Mod Quad the next day (she was 8 mo) as it was decided she didn't need primary surgery and we already had a surgery room scheduled. He said it was aggressive, but he was definitely advocating it. The rest of the team decided they wanted to see how she would do over the next few months & wanted to see her again when she was 12-14 mo (talk about an emotional roller coaster!) We live in Japan right now (most likely for another 14-16 months) so we're trying to decide if the surgery is recommended, should we wait until we're back in the states for good (it's a 20+ hour journey, which is harder on us, she usually sleeps), or do we even put her through the surgery since she seems to be SLOWLY recovering.

Has anyone noticed any lost function from the surgery? She's gained so much, I would hate for her to lose anything. I would appreciate any input/personal experiences. I'm just so torn! Argh!!!! This is all SOOOO hard!!!!

Thanks again!
Heather

[christy]

Hi Heather.

While Katie had to have primary she too needed the caps at a very young age (11.5 mos). However she was unable to lift her arm due to contractures (we had been told before the primary that she actually needed a pec release at the same time) and therefore wasn't getting to see the success of the primary. The results were amazing, no regrets. We have always been aware, even if unconcsiously, that each surgery was going to be needed because the function levels would start decreasing and we would see outward changes in the look of how her arm hung. I would ask Dr. Nath what would/could be affected by waiting on the mod a couple of years and throw that into the equation. In our case the contracture was causing even further deformity of the shoulder joint, pain and loss of function so we felt there was no question of waiting. That may not be true in your case however. Not much help, I know but sometimes you have to ask alot of questions and go with your gut instinct on the decision.

[CathyY]

The only regret I have about Mod Quad is the amount of time I spent agonizing over the decision instead of having it done! It exceeded our expectations in every way. My son gained so many new movements, which he uses every day now 1 1/2 years later. So very glad we did it and I would make the same decision again! Good luck with your decision.

Cathy

[Clint]

Heather,

I'm sure you will hear this a lot today, but we have had no regrets from the MQ. Hannah can now touch her ear, the back of her neck, and is even starting to put her hand in her back pocket.

I know that some kids have different recovery times when the splint comes off, but I have never read of anyone loosing any function long-term.

We opted to have the surgery early in the hopes that the joint will form correctly and lessen the possibility of more surgeries. For each surgery (primary and MQ) we drove from Charlotte, NC to Houston and back. Definitely a long trip...2 days in the car. But Hannah travels well and slept a good bit of the time (execpt for the puking incident in Louisiana, but forget I said that!).

Good Luck. I'm sure you'll make the right decision.

[Francine_Litz]

Many people hate when I say this but Maia's mod quad was a miracle surgery. It gave her the world. Regret it? No way. I feel like Cathy Y. .. I regret spending so much of my energy worrying so much about it. It was an amazing surgery FOR MAIA. I say FOR MAIA in caps because every child is different and each child's issues are different so you need to make careful considerations and research it completely. We also think the world of Dr. Nath. He is working so hard to make life better for the kids.

I journalized Maia's mod quad experience.... it wasn't an easy one, she had a lot of post surgical pain and then we ALL got this major flu and she was puking into her splint and all....awful memories.
http://www.injurednewborn.com/maia/homepage.html - so you can read it but understand that it was not a reaction that normally happens... LOL..

Good luck,
I wish your child the best,
-francine

[Kristie]

Heather,
My son has not had Mod Ouad surgery yet (or any other). But I do have advice for you! If Clara is gaining then I would hold off on any surgery. IMO gaining is gaining no matter how slow. I would rather let my son gain as much as he can on his own before he has surgery. There are plently of people who have surgery well past the age your daughter will be and have done great. Sure people will tell you that you should consider Mod-Quad earlier due to reasons like more time to help the joint form... or having it earlier helps them get used to it faster ect. You can check to see how it is forming and such via scans to see if this is a huge concern to deal with ASAP. If I were in your shoes I would consider waiting longer. Also I would get a few additional opinions. I personally don't think waiting until you get back to the states would be a huge problem. And that would make it very easy to get some additional BPI docs thoughts on Clara. From my understanding you are not really facing the same type of "time issues" with the MQ like you do with the Primary type surgeries.

Also I have heard of people having losses. The one that stickes in my mind most is that one mom mentioned that she was told her son would lose the ability to across his arm in front of him (like is need to play hockey).

If you would like to e-mail personally feel free to contact me at kristie@jesusway.org

Blessings,
Kristie

[tcon]

Heather, I too am struggling with the same decision for my 7mo old daughter. Dr. Nath suggested that she have Mod Quad when she was 10-12 months (we're tentatively schduled for aug 25). My daughter is also slowly improving but I am so afraid of shoulder joint deformity. What I most want to avoid is the repeated caps surgery. I am overwhelmed by the different schools of thought. I guess I need to learn more about the different approaches. We have an appt with Dr waters in June. Part of me thinks that having mod-quad early is a good idea and will hopefully avoid any permanent joint damage. Is there anyone out there who DID NOT have any secondary surgies and has avoided any shoulder problems. My daughter has internal rotation, no suppination, winging and the classic elbow posture. I dont think she has any contratures yet..I can do full ROM.

[Clint]

Heather,

I agree that the timing for the MQ is not as critical as with Primary. However, I think joint deformity is a major concern with these kids as they grow. The sooner there is a full range of motion, the better chance there is for a "normal" shoulder joint. While radiological scans can immediately tell you if there is a problem with the joint, being able to have it fixed immediately is another story. Sometimes scheduling surgery can take almost 6 months. I have also heard of parents being told that their child may loose some function, but I have never heard of any children actually loosing function.

Tcon-The internal rotation and "trumpet" elbow posture are indicators of a contracture. If there are no contractures the arm lies in a neutral position.

[Francine_Litz]

You'll read here that each child is different... for example we were told that Maia will not be able to reach behind her back (something she couldn't do anyway so it wasn't a loss).... I read above that another child CAN reach behind without a problem. Then I just read that one child was told that he would lose movements in front so hocky would be out....but this is what Maia can do best.... So my advice is not to compare what a child can actually do after the surgery because that is very personal.

There are many reasons they are doing the mod quad earlier than later... one reason as kristie mentioned is to try and form a more normalized joint earlier on. This makes a lot of sense. Another reason is to give a child better range earlier so that compensatory movement / habitual movements don't form or can get reversed early on.

Gains are good but it all depends on what the gains are... what additional gains will the child get from having the mod quad that he/she doesn't have now?

Dr. Pape talked about how important it was to remove all the "biomechanical" blocks first. Can't bring a function to its fullest unless all of the biomechanical issues are handled first. If there weren't biomechanical issues - the mod quad would not be necessary - there would be nothing to do.

I do know a child who had avulsions and avoided secondary surgery and doesn't have shoulder problems. Her arm is in great position and she proabably won't need any additional surgery. Muscle imbalances are a funny thing. Some have them some don't. Dr. Nath told me it's because kids with avulsions are less likely to have muscle imbalances because their recovery is more "even"...whereas with ruptures, things are growing in much differently - some fast, some slow.

Get more than one opinion if you are not sure. Ask a ton of questions.... especially questions about long term gains and long term losses if you have the surgery AND if you don't have the surgery. Ask for specific movements - like the mom who asked about hockey for her son.

http://www.injurednewborn.com/maia/drquestions.html
maybe there's a question in this list that you haven't asked yet?

[marymom]

there are plenty of BPI kids who are surgery free who have shoulder atrophy, minimal or no spuppination, and inward rotation,
My son is 4 with all that and I will testify, he is quite happy and complete.
...but who knows, maybe down the line, Ill be wishing I had done more...Im not trying to say that my choice is the "right" one, Im not sure there are such a thing as right and wrong choices
but at this time I have no regrets