Percs

I took Nathan to see the orthopedist today. According to the surgeon, Nathan’s hips had gotten significantly worse since he first saw him, and we needed to talk about surgery. He told me that Nathan’s left hip was at about 42% subluxation, and the right was at about 35%. He felt that at this point the best alternative was adductor and hamstring release using percutaneous incisions. He explained to me the risks and benefits of the surgery, told me that even with this surgery it was possible the hips would still come out of the socket, and scheduled Nathan for surgery a month from now.

I have to admit that although the news was bad, I wasn’t terribly upset by this. I guess in the last few months my views have changed and I am most interested in Nathan’s quality of life. If a minimally invasive surgery has the potential to give him some release from pain and increase in function, then I feel happy and willing to move forward. Until now I have been completely opposed to the thought of surgeries or Western medications. But now I am not, I just want him to feel happy and comfortable. I know how uncomfortable tight adductors can be because I’ve been dealing with this myself for the last few months. It’s terrible! So if there is a quick and easy fix for Nathan, then I’m all for it.

Here’s the curve ball.

Before I wrote this post I went back and looked through old posts where I wrote about Nathan’s hips. I realized that the change hadn’t been so significant after all! When he was first seen by the UCLA orthopedist, he was found to be at 35% subluxation of both hips. Six months later at Children’s Hospital Los Angeles the right was at about the same degree of subluxation, but the left had progressed to 40%. Today, the right was at 35% still (no change in 1 year!), and the left at 43%. This doesn’t seem so alarming to me! In fact it shows that what we are doing is having a decent effect as the right hasn’t changed and the left is not much worse.

So now I have a tough choice to make. Keep doing what we’re doing and hope that he doesn’t get worse or that the progression continues to be slow, or simply skip to the “end game” and go for the PERCS surgery?

I found a really good explanation of the surgery here:

Adductor Lengthening / Hip Muscle Release

Already from reading this information I am less comfortable with the procedure. When the doctor described it, I thought it would involve cutting a portion of the muscle, not all of it. I don’t know how I feel about them completely cutting the adductor?

Has anybody had experience with this procedure? Any thoughts/suggestions would be greatly greatly appreciated!!!

Comments

  1. This child is different than Nathan but the only one I remember has had this surgery.

    http://elenadoodle.blogspot.com/2010/11/little-anxioussurgery-is-thursday.html

  2. Hi Marcela! I am relatively new to your blog. I found it thanks to Barbara. 🙂 Does Nathan already receive phenol or botox injections in those muscles? We are currently dealing with these decisions (surgery, injections, therapy) for our son whose right hip is 50% subluxated. Unfortunately, there are no straightforward decisions, but I agree that quality of life is the best guiding principle! I wish you much clarity, wisdom & peace with your choice for Nathan. (Both him and Belle are ADORABLE! 🙂

  3. Hi Marce, we are not at home, I have almost no time to read. Please check Ulzibat operation. When I am at home I will send you one video. I have known about this approach since 2007. Oliver left hip is also getting worse. In case I will give a green light to operation than I am thinking only about this approach. They are also some pages in Spanish.
    Here is the video. You can find also some info on the youtube.com
    http://www.youtube.com/watch?v=uaX6rapGMgQ

    Why do I like it? They don’t cut the fascias. They cut just and exactly the problem. Once the muscle is cut then the child cannot get the power from the ground.
    Actually, I still don’t know if they do it also for hip’s problems. I have to check it. But the problems with hips can be more complex then to cut just adductors. Unfortunatelly, I have no time to write about it more and in English even more difficult.
    Hips have been my main issue these days. I am still looking for other option but I am not happy with Oliver’s hip. I have to control it myself. The doctor ……… don’t care???? I am not going to wait for the day, they say it is bad. I know that it has been bad alredy.

    So, good luck. Sometimes there is no good solution, just the better one. Unfortunately.

  4. http://Tami says

    Hi Marcela,
    I know it has been WAY TOO LONG and for that I apologize, but I have started following your blog again and this is the same surgery that Izzy Cate had at 1 1/2 yrs. of age. And we couldn’t have asked for a better outcome. Call me if you have some time to chat about this and all kinds of other things! I think of you and your sweet family all the time and pray for you constantly. Hugs to you my friend,
    Tami Fite
    Just email me and then I can e-mail you my phone number!

  5. Ryland had surgery last Jan and we had alot of different problems with it. He did Botox for a couple years which helped but it’s wasnt working much because he wasn’t gaining weight and needed to, to have more botox. His legs are better than before surgery but he had lots of nerve problems with it, it’s just now 14 months later is he finally gaining weight back, last year at this time you couldn’t even touch his feet and he was throwing up all the time because of the pain and whatnot. We switched his formula and uped his med and it took till June for him to get over whatever was causing problems.
    I don’t want to scare you many other kids have it done and are fine but I just wanted to let you know what could happen.
    We did Rylands in Jan because he would be at home for a month and it was snowing and cold season so it was a good time to keep him at home. He had casts on for 3 weeks. Now he wears a brace on his right legs because it falls to much to the side while he sleeps, can’t remember what it’s called
    I was 8 months pregnant when it was done but I wanted it done before having to take care of a baby.

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