Need your opinion on Capsulodesis

[claudia]

I will start off by saying that I did not look at the video. I feel the same way as Francine: I am not qualified to make a judgement about any child but my own.
As for the surgeries we choose to do with our children: for me, primary and modquad were no-brainers. My child had no function and those 2 surgeries gave her function. In light of the function she had, we chose to do biceps lengthing. And we are glad we did.
It was a choice we made. We could have held off. We chose not to. Unlike primary, there is no time-frame.

My point here is that the decision is YOURS. The doctors can't make it for you, nor can we. If you feel there has been improvement, then just don't do surgery. Or, you can send another (new) video to TCH and to Dr. Kozin or whomever you want and see what they say.

The surgeries are recommended. They are not mandated.

Francine has developed for herself (and Maia) a criteria for surgery and she has followed that criteria, NOT just what a doctor says. My husband and I also have our "family criteria" and, for instance, biceps lengthening fit into our criteria for doing surgery.

Make a list of what you want any surgery to accomplish: take away pain, improve function... and then talk to the doctors again. And if you are just not sure, then just keep asking questions.

hope it helps,
claudia

[admin]

Logically speaking...IF the video to TCH showed dislocation so obvious that it could be diagnosed from that video then
I would believe that another Dr, particularly one versed in Obpi would be able to spotthe dislocation also.
and since they both cannot be right (or can they, is it possible the dislocation healed itself? I would be open to that)
I would assume that the doc feeling your daughter is better qualified because he has acess to touching and palpating her.
You can always get another opinion
Things that I would consider far more and long before ever consulting a doctor is do I even want to consult a surgeon?
is my child having pain and is it affetcing her well being...because I believe that surgery CAN have a negative affect on the well being of a child and the whole function of thefamily as you have already experienced (as well as positive -this is MY view)- I would try to avoid it if possible.

[Mary1]

Claudia How are you. Do you plane to look at the video? Mary

[Francine_Litz]

On this link is a picture of Maia post splint...
http://www.injurednewborn.com/maia/coolmax.html
At the bottom of this page is her picture - this picture was only taken 1 day out of the splint... it's her leftie arm. You can see that her biceps contracture is gone - her arm is straight - and internal rotation is gone as well. It's the best we've seen Maia's arm in a long time. It's now after 6 days of unsplinting and biceps are beginning to function again and for the first time her arm looks quite natural. We are extremely pleased that we made the decision to do the capsulodesis. Her issues were such (and shown on a CT scan) that the capsulodesis was the correct surgery to do. Maia is also very pleased with the results and calls her arm her "sweetypie armie" now. She kisses it and cuddles it.

-francine

[admin]

I don't want to start any trouble but how come people here give opinions and thoughts based on what people write and pictures posted on websites but have problems looking at a video?

[Francine_Litz]

Guest - thank you for bringing that to my attention. So now I have watched the video and I have this comment to make to the family...

What a cutiepie! That's so cool that he can do jumping jacks!

About the capsulodesis, send the scans to the two doctors that you are talking to already and to another one not yet on your list or even more... and don't stop asking questions until you are completely clear on what you want to do whether it's to do that surgery, another surgery or NO surgery at all.

I'm sorry that I cannot tell you anything more by watching the video, but I didn't know that my own daughter was dislocated or had severe internal rotation until her doctor pointed it out to me and we got the scans to prove it... and she was dislocated twice. And her elbow is dislocated too. Neither my husband or I NOR ALL of her therapists knew she was dislocated at any time.

Because each child is so different, there is no way I can tell you what the best thing to do would be. Not only is each child so different but each doctor has their own idea of what needs to be done and how it needs to be done.

I do wish you the best in your decision making process. Parents always make the right decisions for their children. Have faith that you will, too.

-francine

[Francine_Litz]

Louise - actually the foam inserts come off in strips and I just cut up this $5 long sleeve winter Cool Max shirt that I got in the running store and sewed it onto the foam... zip zip zip... anybody could have done it. Didn't take much effort at all... just a little thought about how to cut and where to sew! LOL

[anahithasdad]

Thanks to all the wonderful parents that have responded to my request for opinion. I will post another update once we meet the local surgeon with CT scans, on Thursday (7/31).

Best Regards,
-Srinivas

[anahithasdad]

Sorry for the delay in posting this update:

After seeing the CT scans, our local orthopedic surgeon said there is indeed posterior subluxation of humeral head with respect to glenoid in Anahitha's affected (right) shoulder. Glenoid also is poorly formed.

But he said this was not reason enough to go for any surgery. He said though it is not in ideal condition, it had settled in a good position and the child is able to use the arm with no pain and with relative ease. He said he would not advise any surgery at this point in time. He advised continued PT and evaluation after 6 months. We think we are going to go with this decision, unless something drastically changes....

Thanks a million to all the parents that responded to us...

Regards,
-Srinivas