Any Mod Quad regrets?

[thetylers]

My opinion is that the urgency of muscle transfer surgery is not on the same order of urgency for primary surgery. So I don't think it hurts to evaluate other clinics in the timeframe up to ~ 2 years old or based on whatever the MRI or other evaluations for your child indicate.

From what I've read and heard from Dr. Nath personally at the BPI fun day is that Texas Children's is moving their timeline for their brand of muscle transfer "mod quad" to earlier around 12 months old range, where prior it was more around 18 months to 2 years. I'm not way up on all the reasoning as to why this is better or not..

We do see Dr. Waters at Children's Hospital Boston as my son's BPI specialist and he and his team does not perform surgery as early as TCH, except as I said for primary based on their evaluations etc... Not to say he does not do primary nerve surgery, muscle transfers, etc... he certainly does. There's others on the board right now with children that are at the no primary / need secondary stage that can talk in much more detail. My son is 6 months right now with no primary so I'm thinking I've got about a year to do ROM, watch his progress, and research research research before we're at that next secondary decision point if deemed appropriate.

I did hear one reason on waiting on muscle transfer, and it was to let mother nature form the joint more, as a more unstable joint can lead to a harder time after surgery for it to form the right way. I'm sure there is a counterpoint the other direction as well as existing bad positioning will deteriorate the joint faster...

Anyway, sounds like you have time to get opinions and my advice is to feel sure you've got all the info you need before your child's surgery.

Steve

[Paula]

From what I was told the reason why they are doing the mq earlier on the kids is in hopes of the child recovering more movement earlier to have a better chance to carve out a socket maybe avoiding caps surgery later.
At first I did regret the surgery but because after coming out of the splint his arm was so weak and it took a few weeks to get back to presurgery state but after that he had some improvements and no I no longer regret my decision to do surgery.
Where in Japan are you? I have a sister and brother in law that are stationed over there.
Paula

[mom_2x_2002]

Thanks

This has really helped me out too knowing that I am making the right decision for Hannah to have Mod Quad done.

Nicki

[m&mmom]

I regret allowing Matthew's pec muscles to be cut. There's differing opinions out there on what to do. Before mod quad Matthew's pecs were tight. The pecs were released and now they're tight again. Once he has had the anterior capsule release the secondary issue of his pecs being tight should resolve.
We decided to have mod quad at 18 months. Matthew was severely interally rotated and he started to lose function. If this didn't happen we would have waited until closer to 2.
Cindy

[CathyY]

Cindy,
I am so curious about this. I have been following your posts about the anterior capsule release vs. the posterior approach and I am very interested to learn more. So I will certainly be following your posts regarding your son's surgery on anterior shoulder capsule!

But I have one question: how can his pecs be tight if they have been released? I don't understand this! Once the muscle has been released at the tendon, how can it be tight? I understand the concept of the capsule being tight, but I don't get how releasing the anterior capsule will give relief to pecs which have already been released.

My son's therapists have said that he appeared to be tight (he also had pecs release) but they felt it was due to the entire shoulder rolling forward due to posterior dislocation. I would love to know more about your perspective. Thanks for any additional info you can share!

Cathy

[m&mmom]

Cathy,
His pecs are tight because the shoulder is still internally rotated pulling them in. When his pt was performing the mfr on him as soon as she started his pecs loosened up. The tendon was released but the front of the shoulder being tight wasn't addressed during his mq.
The anterior capsule release gives relief back to the pecs because the humeral head is put back where it should be. I guess the way I picture it is the front of the shoulder is small and tight so it's pushing the humeral head into dislocation. Once the anterior tightness is released and the humeral head can rest where it needs to all the secondary issues resolved (tight pecs, partial dislocations, repeat surgeries,)
Hope this all makes sense (we've been painting all day, lol)
Cindy

[Francine_Litz]

Cindy - I recall that 15 kids had this done... do you know when the first one was done? Any way to get these parents to come on the message boards and talk to us about it?

Also - do you know what they would do if the child has a posterior dislocation and the front is NOT the culprit? I'm curious because Maia does not have any of these anterior tightness issues.

[CathyY]

Cindy,
Thanks for the update. I appreciate the follow up and hope you will continue to post any new information and experiences regarding the anterior capsule tightness approach. You seem to be the "pioneer" on this front!

Cathy

[Brenda]

Hi Heather!

My daughter Tara is going to have her MQ here in a month at Seattle Children's Hospital. We did go to Houston for her Primary. Though I would love to go back to Texas for her next surgery I live in Washington and the Children's Hospital here does have a Brachial Plexus Clinic with great doctors (they've all seen Tara since she was born).

Anyway, I wanted to pass on that I would be happy to open my home to anyone who comes to Seattle for BPI. I am a 'stay-at-home mom' LOL ya right! But seriously, if anyone finds themselves coming here please contact me and I will come pick you up.

Good Luck! Brenda

[Lulumom]

My daughter was recommended the MQ and bicep tendon lengthening at 18 months, we waited until she was 27 months and opted only to do the MQ. Her pecs were also released, wasn't prepared for this, found out after the fact...I would have liked to research that aspect more. So far no regrets, her first video eval stated that she was not a likely candidate for any follow-on surgery, except the bicep one, which they had recommended earlier. She had the MQ surgery in the end of September of last year.