United Brachial Plexus Network

Hi Everyone!

I want to get your opinion, please help.

A doctor recommended the surgery for my daughter (we are going to try botox first to determine whether the four muscles need surgery or just one) but this local doctor does not do surgeries on kids until they are 5 years old. My daughter is 19 months old and he said it's up to me if I do it now (with Dr Nath) or wait until she is 5 years old. He says because they are easier to work with on the rehab side.

I have my doubts because I think if I wait that long, her issues will grow more than necessary or take this doctor's advise and wait until she is able to understand what is going on.

My daughter had her Mod Quad surgery at 14 months old. This was actually performed by Dr. Nath. I was sceptical about the need for it that early, but everything turned out fantastic! We couldn't have imagined better results.

If there is one thing I have learned through all of this is that with rehab, (rather than the age of the child) it has more to do with the perseverance of the parents. Learn as much as you can to do at home from the OT and then get creative.

At home, I developed new ways to get her to stretch and strengthen that left arm. One was to place fishing weights in an old turkey baster for her to lift (starting light and gradually increasing the weight).

Bribe with candy if you have to (I know that sounds horrible, but anything it takes), but consistently get that arm (or arms) moving, even a little.

In the beginning, we were not given much hope. My husband and I were told that with the severity of our daughter's condition, the best we could ever hope for would be 20% use of her arm. With very hard work, she now has 80% at age 6.

I hope this was of some help and if you have any questions or want to simply talk about BPP, don't hestitate to email.

Best of luck!!!

Yaritsi's mom:
Well, really, it IS your decision when this surgery is performed.

The secondary surgeries are not as time-specific as primary is. The anterior capsule release is not being done on older kids yet-time will tell for everything.

You need another opinion. Your local doc sounds like he is not quite in the loop. Overall, the bpi docs feel that with muscle and tendon releases, the earlier the better.

Nath did my daughter's modquad when she was 14 months old. She is now 8 1/2 years old. I wish I had checked around more. I wish there had been an anterior capsule release (ACR) then. He did a "full cut" telling me and my hubby that he was "saving us from an osteotomy". Well, she'll need the osteotomy anyway and now she will also need breast reconstruction surgery because of the major and minor pectoralis muscles that he cut.

As time has gone by, I have changed how I feel about all the cutting and moving of muscles and tendons. I think that the ACR is the wave of the future. Even if you need tranfers with the ACR, less is transfered than in a "mod quad" style surgery.

Juliana's modquad gave the ability to lift her arm, but at what consequence? No internal rotation, severely impacted ADL, and a very unstable shoulder.

Get more opinions. You have the time. We have lots of great docs on our medical resource page.

claudia


Message was edited by: claudia

Thank you both Crystal & Claudia!

This is what I need to hear about, the long term consequences. I certainly do not want to jump at it and then regret it later. I have waited 1 year to see results and while I too think she needs surgery I will see other doctors and certainly see a bpi specialist not just local doctors. I see Dr nath next month and I will ask him what he thinks about doing just the ACR and not full Mod Quad.

Thanks!!

Yaritsi's mom:

There a number of doctors in the bpi community who are incredibly well versed in ACR surgery. It is not one of Dr. Nath's specialties. He is a plastic surgeon by training. The ACR uses skill and technology that is really the purvue of orthopaedists. Any surgeon can learn arthroscopic surgery, but orthopods like Dr. Pearl (who invented this surgery), Dr. Kozin (at Shriner's Philly) and Dr. Waters (at Children's Boston) are docs who do this surgery all the time. Though I am certain Dr. Nath will tell you that he is capable, I for one, would feel more comfortable with someone for whom the ACR is a part of their "vocabulary" of surgery.

All three of the docs I mentioned are available via email to ask questions. If you don't have Kaiser insurance, Dr. Pearl is quite expensive. Dr. Kozin charges nothing, as Shriner's is a no-fee hospital. And Dr. Waters is at a leading Children's Hospital and they take practically all insurances.

I suggest you contact some second and third opinions.

claudia

Claudia:

Thank you for giving me that information, especially about the insurance piece of it. I filled out a couple of days ago the admissions application for shriners but need to turn it in.

I will definately send them an email.

Thanks again.

My son Frankie had the mod quad 2 yrs ago at 13 yrs old with Dr Nath. He is now 15 yrs old I wish I had done it when he was younger but was fearful and unsure just as you are. We decided to have it done because he was having a lot of pain from the tightness and the muscles were pulling his shoulder up so he was very uneven which the mod quad fixed and stopped the pain but even with 2 yrs of OT 4 times a week at a specialized hospital he still can't raise his arm more then 90 degrees. No one knows for sure if having it done earlier would have made a difference due to the extent of his injury but I'm sure it would have been easier doing it then. When he was younger he had 3 surgeries before he was 5 and they were a breeze compared to doing it on a teen and the statue of liberty splint was on for 18 weeks 24/7 it was horrible I had to bath him and dress him and even wipe his butt. He was so depressed having to have all this done for him but now he will tell you he's glad he had it done. He went from 60 to 90 degrees going up. his shoulders are more in line and look more natural, clothes fit better, no pain and he did get alittle more finger movement but is still non functional. One thing that really was great was that before the surgery you couldn't move his arm over his head it was like it would break off if you tried. They couldn't even fit him for the splint before the surgery. Now he can lay in bed with it over his head of course his other hand has to put it there but it can get there and this has made a big difference in his sleeping also now he's not laying on it and sleeps more comfortably. I hope this helps I know how hard it is we had several BPI doctors tell us not to do it thqat he was to old but he wanted it. I guess its easier when there older you can get there opinion and they understand more but when there younger they don't remember it later.
I wish you the best and my prayers are with you. Mare

I just wanted to thank you Mare for posting in detail your experience.

Maggie is five and we have went to a couple of bpi drs who say dont have surgery because she doesnt have anything to do surgery with and then dr Nath says lets do the modquad we might not get the totally raised arm but it will loosen up the shoulder and then she might even get some more finger movement from it.

We have been debating this for a while now and reading your post I think made things more clear from a mother and bpiers point of view. Thanks again, Leslie

Leslie
Glad I could help if you need to talk my # is 908-705-6918 or email me at Tinny61@aol.com. Also I posted everyday on UBPN about Frankies experiences so you can look them up it was Nov 7th 2007 maybe this will help you also to know what to expect.
Mare

we had mod in nov of 07. It was the best thing for our son. He is doing great. I love our doctor.