United Brachial Plexus Network, Inc.

Ok, I don't want to ask this but I now find a need to know. Katie's therapist told me last week that she couldn't get that last "oomph" out of her bended elbow. Also the elbow is clicking and popping like crazy a few degrees from what should be fully extended.

I emailed Dr. Nath and am so saddened by his answer. This wasn't a surgery we were expecting and she is not even out of the caps splint full time yet. He suggests that she will need the bicep tendon lengthening in the next few months.

What is it, how was it, what did it do for your child, did it change things for good or bad, what was the recovery, the splinting, the post therapy...you guys know all the details I am asking for. I have to weigh this option well as I am not real certain that she can tolerate another procedure any time in the near future unless it is a very needed necessity. Three so far in 17 months. Needless to say, we are hurt, angry and fearful all over again. Kimberly is just numb. We were so excited..kind of figured it all out. The next video was to be in mid march, figured they would say wait three months and send in another and then we would see them in Columbus (don't forget us Karen!) in june and go from there. That would give her a little break. We had hoped to let her have 1 vacation, 1 summer free to be a kid, maybe see someplace besides TCH (grateful though we are for them) for once.

Sorry to be so whiny tonight and appreciate your answers. And if anyone has any inclinations to throw us in your prayers for awhile, please do. We need them all, especially right now.

have I reminded anyone lately of how much I appreciate this family? and how much I hate this @!%$*# injury?

thanks

christy and family

christy - I am unclear as to why he is not suggesting a dynamic splint first? There's the dynasplint and the ultraflex splint.... (there are pictures of both on the splint page http://www.injurednewborn.com/maia/splints.html)

It might be worth a try? I'd ask.

-francine


and yes I agree with you about hating all of this.. I think that the capsulodesis thing is really stressful and you guys would just now be able to breathe a little bit...just the thought of something unexpected like this is enough to throw anyone into a tizzy.

will be keeping you guys in my prayers,
francine

Christy, I'm so sorry to hear this. You have all been through so much already. Is this something new? Could she straighten her arm completely before the surgery? I can feel it already, getting stressed as I type. How about starting off with a dynamic splint? How many degrees does she have straightening her arm? Oh, I feel like unstrapping the splint right now just to see what's going on, but I won't, I'll wait and do it in the pool next Monday and with pain meds. If it doesn't risk anything major, I would really recommend waiting until after the summer for the surgery. You all need a break and when is Katie ever going to exercise her arm if it's splinted so much? The summer is not a fun time to be splinted. Oh well, I don't know what else to say here except that you're all in our thoughts and prayers. Write me if you'd like, to vent or whatever. -Tina ) ((((( )))))

christy.....can you spell w-a-y t-o-o m-u-c-h s-t-r-e-s-s ??

yeesh - don't you guys ever get a break?

I concur with tina - have you asked Dr. nath about a dynamic splint?

http://www.injurednewborn.com/maia/splints.html
there are pictures of two dynamic splints that are frequently used - the dynasplint and the ultraflex...

I hope he thinks it's worth a try...

I'm dreading saturday BIG TIME - we start with just 15 mins in the pool on sat and sunday...

My heart goes out to you - I hope he approves the splint trial.

we're here for you sister!
-francine

Hi Christy, My heart goes out to you and your little one. The way the bicep lengthening was explained to me is.. they cut out a section of the bicep (with a "z" shaped incision where the arm bends), they cut the bicep length wise and and attach the ends making it longer, then re-attach it. I heard Dr. Shenaq speak about it during a workshop over the weekend. Then last Monday Dr. Nath suggested it for our daughter. She is scheduled in March. This will be her 3rd surgery and it's very difficult for me to start thinking of another, but we do what we have to. Hope my description was helpful. Best Wishes.
Julie Wolfgram

Hi Christy, Just wanted you to know that you can count on prayers from me. I'm so sorry that you were given this news. Katie has other needs too besides her arm. Doctors and therapists' jobs are to look for ways of improving the physical problems because that is what they know, but there is so much more to any child than just their physical needs. Kids also need the chance to have fun and be kids - stress free. It would be unhealthy for them not to have that. Seems to me that by working so hard to improve only one area of a child, the other important areas would suffer. I do not know why the next surgery would be so urgently recommended. There must be other options that you could try first. The rest of Katie has needs too and balance is so important. I feel for you and your family for being put through so much and I will say extra prayers for all of you. Love, the other Christy

I know this is not the news you wanted, but I sympathize. My daughter is 5 now. She had Mod Quad November 2000, and then Bicep/Brachialis lengthening July 2001. This July she is either going to have the C7 transfer or the intercostal graft. As far as the Bicep Lengthening is concerned, it is much easier than the other surgeries (in my opinion). The surgery lasts an hour to an hour and a half. They casted Kelsey in the Operating Room, from mid upper arm to mid lower arm. It stayed on 8 weeks, then 10 weeks in an extension splint. We used trash bags taped on the arm during bath time to keep the cast dry. The results were wonderful! Kelsey was so happy to have her arm straight to her side. She is able to rotate her lower arm now, and can touch her nose, ear, tummy. She never could before.

Surgery decisions are tough. I am sorry you have to make your decision so soon after the last one.

Thank you, Christy (CW1992) for saying so well what I wanted to say, but didn't know how to say w/o it coming out wrong. You have a great way with words.
-Tina )

Hi Christy,

Ian had the biceps lengthening done this past summer, and the results were great. My only regret is that we did not do the surgery when it was first suggested to us over a year before we actually did it. During that year, in which we attempted to correct the contracture with therapy, Ian lost a great deal more extension, and when he finally did have surgery Dr. Nath was unable to gain full extension. I feel that if we had done the surgery when recommended instead of going with the "fix it through therapy" approach our surgery results would have been excellent instead of just great. Of course this is just our experience, every injury is different.

Ian was very happy with the results of surgery, it was interesting to see him compare his arms and notice the difference himself (he is eight).

Ian now sleeps at night with his dynasplint, which seems to be working well. Dr. Nath feels that we will be able to gain the full extension/last few degrees using the splint. So far it has been working well (aside from a rash episode!).

Good luck,
Bridget

We just returned from TCH last night(monday surgery)Blake had capsulodesis and bicep lengthening done and even though he is splinted, it is so wonderful to see that arm so straight!!!I'm so looking forward to when we see some results, I'm sorry your child has to undergo another procedure, we really asked a lot of questions before caps on Mon, we didn't want his contracture to get worse from splinting(the normal bend at the elbow) Blake is splinted with his arm at 90 degrees(arm straight out to the side) Blakes brachialradialus muscle was super strong, so hopefully the bicep lengthening will work!!! Good luck and my thoughts are with you as you make another tough decision.