United Brachial Plexus Network, Inc.

Hi everyone
We have been told recently by Dr. Nath that Parker would be a good candidate for the Ilizarov Technique. Dr. Gugenheim performs it. I can get no answers from his office, so am wondering if there are any families who have been through this and if you know if there are any surgeons in the Minneapolis/Chicago area that could also perform this surgery. Thanks so much! I am so lost on this one and have found no posts anywhere discussing it! -Pam

I am not sure how common it is in the PBI community, at least for OBPI, as it is used for fractures and limb lenthening and to correct defformity. I was told I could have it done (when I wanted the legth issue fixed), they said it wasn't possible due to the nerve injury, still not sure what they meant. It was 16 yrs ago, so things may have changed since.
Good luck with it though, hope you find some more info from people who've had this done. (I only know one friend of mine who had it done for her leg).
Marieke (30 yrs old OBPI)

Pam:
I know of a girl who did this when she was about 9 or 10 years old. She had had cancer of the bone, which was cured, but the tumor had been in the growth plate of one humerus. I will tell you that is was incredibly difficult on her. She is a tough cookie, too.

I would think long and hard about doing this and why you want to. The procedure is painful and the Lizarov brace is overwhelming. If Parker is school aged, then not only will there need to be a list of accomodations, but he will need to deal with the staring and the comments. This is not like being in a post surgical splint or cast.

Juliana has a marked difference in the length of her arms and the size of her hands. As aggressive as we have been in her treatment, this is one I, personally, have never considered.

Even as we consider two different surgeries to help Juliana gain function, I know that at some point we just have to accept what is. We are able to accept the reality of her situation, and I know that, because it has taken us about 2 years to get to the point of looking at the next step.

Not that you've really asked for it, but on this one, I would have to say, you need lots of extra opinions. The "Lizzy" is a huge commitment.

good luck in your decision,
claudia

Wow Claudia. Your opinion is very strong and gives me so much to think about. I really don't want to do this, and Parker has been through 3 surgeries already (he doesn't remember those because he was so young). It is tougher now because he is 7 and knows enough to ask, "Will it hurt?" He has limited sensation in his arm so I was just hoping it wouldn't be so traumatic. I am not doing this because of the lengthening, so much as the straightening and rotation. He has a severe bend in his elbow. This is one of the toughest decisions so far. Thanks so much for your input. -Pam

Pam, I am curious to understand then why not just an osteotomy? Usually they do this on adults so that they can control the new positioning and so that they can get lengthening (at least that's the way I understand it).

If your child is younger than 18, are you aware of Shriners in Philly. In my mind you should not be facing this turmoil alone, and I am certain that you will find much more comfort through Shriners. Otherwise, I am greatly concerned that Dr. Nath is making this recommendation, he might be using you and your family to diversify his medical practice.

No one has ever brought up an osteotomy. I don't know what that is? What does Ilizarov do that osteotomy doesn't? We will be meeting with Dr. Gugenheim soon. I will bring this up. Thanks for the idea.

Has Parker ever worn an elbow extension splint? I know that I had a pretty bad contracture "bend" in my elbow and have been able to avoind any surgical procedure by wearing a splint every night to straighten my elbow. After 7 months of not being able to wear my elbow splint some of the contracture has returned but is going away now that I am able to wear my splint again. And the neat thing about it is that I actually sleep better with the splint.
Good luck with your decision. It is a big one to make.
Amy 19 ROBPI from MN

Pam, this is how I understand it. An osteotomy is when they fracture the bone, reposition it and pin it or brace it and pin it so that it grows together in a new position. With this method, the position is the position and it can't be changed again unless you re-fracture the bone.

The the Lizaroff brace, they fracture the bone but they don't reposition the bone, pin it or anything like that. They attach the brace by putting the rods of the brace through the bones and every day you turn the knobs on the rods and the rods slowly turn the bone for you. The rods can rotate the bone and the rods can also separate the bones. So like I wrote earlier, this brace is used when an osteotomy isn't enough. It's when you want to have control over the position of the bone and if you also want to have the arm lengthened.

The Gehrings daughter Kylie had an osteotomy and they put all this information about it on a newsletter for the Midwest Brachial Plexus group a while back. Also, I know some who had the Lizaroff brace and if you want I can send her your email. Can you post your current email?

I was googling this morning and found a website for you : WWW.AESTHETIC.COM.UA hopefully this will help you with your rough decision !! Gayle