Archive for April, 2016

Question of Bones

Big points to my cousin in Florida for asking a great question about muscles vs. bones.

If you have no idea what we are even talking about, read this post first. It will fill you in on Chloe’s upcoming surgery.

My cousin’s question is: “Is shortening the bone easier than ‘stretching’ the muscles and tendons?”

I nearly addressed this in my original surgery post, but it was getting so long I decided not to. But it brings up a couple of really good points that are key to why this surgery is the better fit for Chloe.

First, the short answer is that NO, shortening the bone is NOT easier than manipulating tendons and muscles. Both the skill and difficulty of the surgery itself and of the recovery time and process would be way simpler and easier if it were only involving muscles and tendons.

Lengthening or releasing muscles and tendons is a great and helpful procedure for many patients. However, there are 2 main reasons that this femur extension surgery is a better fit for Chloe at this time.

First, the doctor is wanting to fix a greater degree of angle than a tendon/muscle procedure would fix. In fact, the doctor’s goal for Chloe’s surgery is to fix 45-50 degrees of her contracture! That’s a significant change. And it’s not a change that a tendon/muscle release would accomplish. If I remember correctly, a tendon/muscle release fixes closer to 10-15 degrees. Chloe’s contracture is significantly worse than that.

The other big reason this femur surgery is a better fit for Chloe is that the end goal is increased function. If the only goal were straightening, then a different surgery might be an easier option. But since the end goal is more functionality in walking and standing for Chloe, then it is important to keep the muscles and tendons more intact. Simply put, if we go to snipping those muscles, then she loses the functionality of controlling them for walking and getting around.

I did mention though that the doctor does plan to slightly release her tendon at the hips. He is going to do it quite conservatively so as not to lose that function. This tendon portion will be an easy surgery to go back and do again if we decide he needs to release it some more later. But for now, erring on the conservative side is the best choice for her. Time will tell if she would benefit from any releasing later on.

So again, thanks for the great question. And don’t hesitate to ask some more.

(*disclaimer: I am obviously not a doctor… These posts are my way of updating friends and family on Chloe’s upcoming surgery, not to be the final word on medical procedures or judgements.  These posts are purposely written in a very simplified and general way so as not to run everyone off with crazy vocabulary and medical talk. And guess what? I might mis-speak the logistics now and then so don’t be citing the journals on me…. I’m communicating the general idea, and it’s okay.  Thanks. :))

Operation: Straighten Those Legs

IMG_6822It is time to update our friends and family on a big, upcoming surgery for Chloe.

But, first…

The background:

For the past few years, Chloe has been losing the ability to walk and even to straighten her legs. Her muscles have continued to tighten and shorten to the point that now her knees are half-bent at their straightest and she is bent forward at quite an angle at her hips, too. To imitate how difficult standing and walking have become for her, put your self in a wall squat position and attempt to walk around the room while holding that position. It is quite laborious! Because of the pain and difficulty this position causes, Chloe usually chooses to move around in her wheelchair or by crawling on the floor. While these 2 modes of mobility are totally fine, she wants to stay on her feet.

There is no clear explanation for this decline in mobility. Doctors’ best explanations are quick growth and results of puberty. Puberty tends to wreak havoc on the bodies of kids with neurological issues.

For a couple of years, doctors have mentioned different procedures and surgeries that might possibly help straighten her back up. But there has never been much clear guidance for them about which one might be most successful. Remember that Chloe remains quite a mystery since she is still undiagnosed. The best doctors can do is speculate what might work since they don’t have a comparison of others with her diagnosis.

Recently, Chloe had the opportunity to be the subject of a highly specialized gait analysis. The details of getting her into that clinic and the story of her amazing performance there is the subject of a later blog post. (Someone remind me to tell the story soon if I forget!) But the results of that gait analysis led doctors to pinpoint which procedure is the most likely to help her. Doctors determined there was one surgery that might be able to keep her on her feet by straightening her legs.

The surgery:

The name of the surgery is Distal Femural Extension Osteotomy. Basically, the surgery consists of cutting a wedge out of each femur just above the knee (yes, cutting through the bones and removing a chunk out of each) and repositioning the bone at an angle, thus, “over correcting” it and making the leg straighter. The bones will be held back together with plates and screws, “deforming” the femur bone in order to have a straighter leg. It’s quite an extensive surgery to consider. The surgery is a way of bypassing the knee in order to straighten the leg. You can watch a video here. (Don’t worry — there’s no blood or anything. It’s actually a training video with a model.)

The doctor will also slightly release the tendons in her hip flexors at the same time, but that is a very minor portion of the surgery. Releasing her hip flexors will slightly straighten her body at the waist. Hopefully the muscles will continue to stretch to bring her more upright.

The doctors are opting to leave the integrity of all of the leg muscles as is; and the hope and expectation is that those muscles will all stretch with the new angle and will remain able to function fully.

The recovery:

At the time of the surgery, Chloe will be hospitalized for 3-4 nights. Then she will go home to rest and recover for 4 weeks. She can’t put any weight on her legs for those 4 weeks.

Then a month after surgery, she will be admitted back into the hospital for 4 weeks for intensive rehab therapy which will continue to strengthen and lengthen the muscles in her legs and teach her how to use her legs with their new angle. A month in the hospital is a long time, but what a great opportunity for Chloe to make progress!

The decision:

Perhaps in another blog post, I’ll tell you some of the things that seemed to us to be significant ways that God has been orchestrating this whole thing for a while. Too many coincidences to be coincidences…, you know?

We sought counsel and second opinions for several months while praying that God would guide our decision.

Doctors agreed in the end that this major surgery is the only way to keep Chloe on her feet. While the process will be painful and time-consuming (ALL-consuming!), it is really the only option available to us at this point.

Chloe has known about the possibility of this surgery from the day we learned about it. We felt that it was important for her to be a big part of the decision. She has wanted to do the surgery all along. She wants to stand, to walk, to cheer, and to dance. As the time draws near and conversations become more real, her anxieties are definitely increasing. (As are ours!) But she still says she wants to do it. The other day while we were talking about it, she typed that, yes, she still wants to do the surgery because “legs helps her to stand up.” She is the most persistent, hardest-working person I know so if anyone can do this thing well, it’s her! She’s ready to go.

The plan:

We have a small window of time in which to do this surgery. It’s now or never. It’s a one-time-chance kind of deal. There’s no guarantee of success. But it is the only and best option available. And we are grateful for the opportunity.

Surgery is scheduled for May 9 (less than 2 weeks from now!) and will happen here in Fort Worth. Chloe will stay in the hospital for most of that week with careful pain management and recovery time. Then we will go home for rest, rest, recovery, and more rest. Four weeks of lying around.

Then, she will go back into the hospital around June 6 and will most likely be in the hospital through July 4. That month will be spent doing intensive therapy several times a day and determining what braces and supports her new legs might need. This surgery is literally redesigning the motor dynamics of her body so we don’t know what all that will entail.

The only guarantee at this point is that her legs will be straighter at the end of this process. We are also hoping and praying for increased function in walking and standing. We are hoping it is much easier for her to walk. And we hope she is able to dance and to cheer on her feet to her heart’s desire.

And the usual:

Feel free to ask questions. Chloe is privileged to have so many people who love her and care about her success. The better you understand the surgery and recovery, the more specifically you can pray for her. And we definitely appreciate all your prayers!

Stay tuned….

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