United Brachial Plexus Network, Inc.

I was wondering this very question regarding surgeries and shoulder dislocations as our sons surgery was approaching. Then someone posted who takes their child to Boston I believe that their child has had NO surgeries and has a shoulder dislocation and they were recommending surgery to correct it. So that told me #1 it isnt connected to the surgeries and it reminded me that #2 all children and injuries are different. When it comes to preventing further damage I will do all that we can do. God bless!

hey Francine, no, Im not requestioning surgery for Max at this point- but you guys would be the first, promise
my thoughts were more along the lines of Debbie's questions and not meant as an "anti surgery" thing, just a question relating to the immobilization-actually the topic came up elsewhere with a friend who had a broken arm as a child and was telling me about his experience (casting caused a contracture)(by the way-water therapy 25 years ago he said was of immense help)and I wondered about how it related to surgery casting- In all honesty I dont know enough about the casting and so forth that they do after surgery but thought it was a relative topic- obviously with Maia it doesnt matter because what needs to be done has to be done- and I think you're right aboput the atrophied muscles coming back- I think they do with ROMs and exercise but -in an already challenged muscle(lacking nerve regeneration) the atrophy from casting at infancy it would seem- might not be as easily overcome with the extra ROMs and massage and so forth as atrophy in an older patient with more normal growth already-
just my thughts- seasons greetings and goodwill to women

Mary, I think you raise a good issue and I'll try not re-iterate what others have already posted, but will just try to add a couple other points. Remember that a lot of the children who have surgery have more severe injuries and as a result do not move / use their injured arm / hand very much. So, in those cases, it wouldn't make a huge difference. The trade off for no movement (or very limited ROM) for a few weeks is outweighed by the benefit of much more new movement shortly to come (or sometimes immediately) upon the splint removal. This is our first time that we won't be doing any ROM for a full 8 weeks so we'll see how this time around compares to other times when we've done ROM daily.

Another thing is that I think some children get really tired of all the therapy (formal PT/OT as well as everyday life stuff and nagging from parents "both arms please" or "left arm please") and in some way, the splint period is actually a break to some children from the constant correcting that they normally have to endure. It must relieve some pressure that they usually feel.

Also, depending upon how their injured arm feels, it might be more comfortable for them to have it in the splint. I've read many accounts where they children do not want the splint removed when the time comes for it.

I think it seems that every decison we face regarding medical care for our children has risks on both sides of doing it and not doing it. It's good to question those risks. Then, after doing all our research and lots of praying, all we can do is hope that we make the best decisions for our children.

-Tina

About the shoulder joint malformation corrections for children who have had multiple surgeries... I've questioned this too to try to determine if there's a link to surgery and here's what I've come up with (JMO). For one thing, as you mentioned I think that usually the children who have had multiple surgeries (or even one surgery sometimes) are the ones with more severe injuries. Another thing is that I know that drs. don't always recommend surgery for shoulder joint problems. Some drs. choose to leave the shoulder as is and basically give up on the joint. I'm sure they have some reasoning behind that too and it's just different schools of thought. Another thought I have is that perhaps some children (NOT all) who have BPIs and have not had surgery might have undiagnosed dislocated shoulders due to various reasons (perhaps again the injury itself isn't as severe, perhaps the parents haven't felt the need to seek additional opinions, perhaps the parents have been misinformed by inexperienced drs as many of us have gone through at some point, etc. etc.). BTW, if a child is getting therapy, but not seeing a BP surgeon, the therapist might likely miss the dislocation (none of Nicole's 4 therapists noticed until I told them what Nath said). So, I've found many other reasons for shoulder problems. BTW, Nicole's shoulder was partially dislocated before her Mod Quad surgery as indicated in an MRI the month prior. The MQ wasn't the cause of the dislocation, but an attempt to fix it before resorting to the Capsulodesis surgery. I hope this helps and again, it's all just my opinion -- today.
-Tina )

Tina,I like your line- just my opinion, today- Ill probably steal it

Katie was originally one of the kids that were allowed to do ROM after the caps. When I asked Dr. Nath about her trying to move her arm so much he said we should treat it as a cast and was considering making it protocol. That aside--Katie is now 5.5 weeks post caps and just tonight tried to pick her arm up out of the splint when I had to readjust the arm strap. No weakness yet...and we see her flexing her muscles (small as they are at present) all the time. Like the others, I don't see the immobilizations as causes of deformities or loss as they are such short time periods. And just like those in a cast, they pick up (and more, thank goodness) what they do lose rapidly. I have a picture in my possession at this moment of a BPI girl that everyone ignored her Mom's concerns about the bump around her elbow. She no longer has the head of the radius to make a joint, it sorta just deteriorated away because it was dislocated from birth. Which is what was happening to our kids that have had the caps and rotational osteos. Just like you and other non surgery parents we base our decisions on what we have researched and prayed about for our child. I don't think my opinion matters a hoot to anybody else because that is their child. Maybe I am with Francine in tired land so if I have written this in a way so not intended please forgive me. I just know that w/o the surgery Katie was getting more and more deformed, grouchy and ouchy. Her daycare providers were amazed at how happy she came back from surgery, we hadn't seen that side of her in months. To me, that was all I needed to know I did what was best for her in this particular case. Night all. Just a couple of more weeks 24/7, it should be interesting as I normally count on all of you to tell me what is going to happen.

Christy - now that we're over a week into this - I just want to meet you and give you a hug! This experience is something else, isn't it? What a trip. Definitely NOT Disneyworld.

you take care, sister,
francine