United Brachial Plexus Network, Inc.

I'm interested in corresponding via e-mail asap with anyone whose child has had the capsulodesis and / or the derotational osteotomy procedure done. If you're willing and able to help me, please post your email address here or e-mail me at rosesmom315@juno.com. Nicole hasn't had either, but has had both recommended by BP specialists and I'm just trying to figure out where we go from here. Thank you very much. -Tina

Tina - just wanted you to know that you are in my thoughts and prayers as you hash through each possibility. This is a very tough position you are in. But the outcome will be great because once you figure this thing out, you will be VERY clear about what to do or what not to do for Nicole and hopefully less fearful.

Big hugs,
francine

Hi Tina,

Cole Michael had the Derotational Osteotomy in March. He was 3 1/2 at the time. I would be happy to give you the details of Cole's experience or if you have any specific questions I would be happy to help. I have to tell you it was a really tough decision to make (surgery), but I'm finally feeling very happy we did it. Dr. Nath told us at the Boston picnic that our surgeon should be commended. So, that was one vote of confidence. And then a couple of weeks ago Cole had a check up from the surgeon who said he was doing well. WHEW!! We still have a long way to go, but all is going well. Take care and email me with any questions, and/or if you want me to tell you what we experienced.

Patty

Tina

I will keep you and Nicole in my prayers. I am sure you will make a wise decsion. You are in a very tough position... so prayers are what I can offer.
Kath

Well, since I can't reply directly under specific posts, I will just combine my replies together in one response:

Patty - thank you. I will email you.

Lyn - yes, I got your email yesterday and will be sending you a note back. Thank you.

Francine & Kathleen - thank you for you kind words. As you can imagine, I've been praying more than ever for wisdom to figure this thing out.

Also, I know my original post was kind of confusing so I wanted to clarify -- one dr. recommended doing the Cap. now, but said that we might still end up needing the Oste. later; another dr. recommended just going with the Der. Oste. now.

Tina,

you know that I said many times that I make decisions based on one thing "quality of life" and I quantify this by saying that PAIN is the top priority when I think of quality of life. In my practice I deal with people who have been in chronic pain for years and I, myself, have had serious pain since my 7th month of pregnancy and it has not yet changed other than it got worse.

When I think about osteotomy I shudder. There is a particular doctor who tries to tell me NOT to think of osteotomy as a "big" thing - he says it's easier than most other surgeries and it's done very often in bpi children.

But this is where my head goes.... I think of anyone who has broken a bone and I know that they have pain everytime it rains or gets cold. I know that two days before it rains, I can hardly walk with my knee pain.

So I think of osteotomy - where they surgically break a bone, reposition it and put plates in to hold it together - I wonder. What is it like for this person as they age? And I hope that moms whose kids have osteotomies...and moms with older children come forward and tell us what the long term aspects of this surgery are. I'd love to hear from a middle aged person who had an osteotomy as a child, too.

I look at capsulodesis as a means of helping the joint. They put the bone back in the socket and then tighten the tendons - so that the child has another chance at creating a more normalized socket. This to me sounds so logical.

If you just have an osteotomy - then what have they done to help the joint? Does this mean that they have given up on the joint? Will she remain subluxated or dislocated for the rest of her life? And then what about the concept of bone to bone articulation rather than cartilage to cartilage articulation...the bone to bone creating arthritic conditions.

You and I are in the same boat with this because we have both been told the same exact thing. I see the capsulodesis as being less invasive - they say not - but I don't understand how to look at an osteotomy as being less invasive.

We've already decided ourselves that the capsulodesis is worth a try because it helps the joint get another chance - but I'll tell you now - if they want Maia to have an osteotomy later down the road - I will have a million/zillion/gabillion questions because I have this mental block about cutting a bone.

What a hard choice this is.
I truly feel for you,
francine

hey (((tina)))

I know this is such a hard time for you- Nicole will be okay with your decision whatever it may be, just wanted to remind you- I know you already know that
and for anyone else reading this who is going thru the same thing I want to say that there are several people who have chosen to not do these surgeries against advice ofcourse...and they have happy well adjusted kids- email me for names if you want-
Tina, Im thinking Frankie quit just before these surgeries but I cant remember for sure...and also do you remember the post on the old board from the parents with older kids who were purposely NOT correcting their childrens dislocations? Who posted those posts , i cant remember:)
there were 2-3 moms who chose not to have these surgeries but I know your mind is made up, I am only offering this information for other parents who maybe reading and trying to decide the same things as you I want you to know I totally support you
Tina, Nicole is destined to be ok with your decisions and her surgeons will be divinely inspired I have no doubt-

Hi All,

I just wanted to clarify a couple of things. First of all it was a VERY difficult decision to allow the surgeon to do the Osteotomy. You have no idea how many times I second guessed myself (or maybe you do). I did talk to a few people whose children had success with it. But they are still children.... And I also wanted to let you know, Cole's shoulder is/was fine. He has some winging, but he has never had any problems with dislocation. This was strictly to aid in external rotation. I know everyone's injuries are a little different. And I know doctors choose to treat each case differently. It's definitely not for everyone. I'm very pleased with the results, but am not sure I would ever want to go through that again. To be really honest, Cole did well with the pain and the cast. What a trooper!

Francine, I did want to ask about future pain. I hope I don't sound to silly, but even if it was a clean cut, not in a joint, and it has healed well..... Do you thing he will suffer the same pain as others who have accidently broken bones? Or will only time tell?
Thanks........

Best wished to all.

Patty