Wednesday, March 3, 2010

Surgery or Therapy?

{WARNING: LONG POST. I want to get all this info down so I don't forget what everyone has said. So many differing opinions, it's hard to keep it all straight! Plus as a bit of a disclaimer, I didn't reread this post... forgive grammatical, spelling, and incoherent thought errors. I'm tired and worn out. Thanks. :) }
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Will, now age 7 1/2, started walking on his toes when he was about 2 years old. I was told that he would outgrow it as it was just a habit. Then when he was 5, I brought it up to his (new) pediatrician and after watching Will walk, he referred us to a (somewhat) local orthopedist.

The orthopedist did his evaluation and watched Will walk, too. He said it was habit and that Will should outgrow it. He said no physical therapy was needed and to not even bother drawing attention to it. He did, however, throw in the statement that if he hadn't stopped walking on his toes by age 8, he would probably need surgery to lengthen the tendons so he could physically walk flat-footed.

So that's what we did. We left it alone and ended up just watching it continue.

Summer of 2009, Will began having terrible headaches and we went to a chiropractor. The chiropractor basically said his hips were out of alignment because of the toe walking which in turn landed him some pretty harsh headaches. The chiropractor was able to bring the count of headaches from 6/week down to 2 in 4 months time. Very nice!

During the time with the chiropractor, Will began walking flat-footed occasionally as well. I figure at some point his hips were hurting so badly that the toe walking helped with the pain and once the hip stopped hurting he was more able to land flat-footed. It's a theory anyway. I estimate that his toe walking/toe standing went from 95% of the time down to about 85% of the time. So while it was a decrease, he was still on his toes a lot.

Shortly after we began seeing the chiropractor, Will had his annual well visit with his pediatrician. I mentioned that the toe walking was still going on and he recommended another orthopedist. I'm not sure if the first one was pediatric or not, but this second one is. He comes from Birmingham once a month to see the patients in the area. He's the guru 'round these parts and I've been told he's one of the best nationally. We'll call him Dr. K.

So we saw Dr. K about 10 days ago. He evaluated Will and watched him walk, but Will wouldn't walk on his toes. He tried so so hard to walk flat-footed, and it was much like a duck walk. Even without the high tip toe demonstration, Dr. K said that no boots, casts, or stretches would be able to fix the problem. Our only option would be surgery to lengthen the tendons. Basically he said that if we don't do the surgery and leave him 'as is', there will most likely be degeneration of the fronts of his feet, with severe callousing, and his feet & leg bones will grow improperly. Oh, and the brain hard-wires itself between 6 - 8 years of age on how to walk. Great.

My understanding is that the surgery is a quite "easy" one, but it does require Will to be "put under," and any anesthesia is scary to me. The procedure would be a few small incisions and they would poke tiny holes in his Achilles tendon to weaken it and allow it to lengthen. Although it is technically an out-patient surgery, he would have a 23 hour stay at Children's Hospital in Birmingham because he's young. He would come home in non-loadbearing casts that he would have to wear for two weeks. They would equip us with a child's wheelchair as well. After that, he would be in load-bearing casts for another two weeks. After that, 7 - 10 days in special boots and then finally after that in his regular shoes.

If we do the surgery now, he could be in his regular shoes by summer.

At first I was in agreement with the surgery, although it scares me terribly. But being the engineering folks that we are, we begin to poke around and ask different people for differing opinions. And here's where it gets hairy. So if you've stuck with this post for this long, try to stay with me. :)

The pediatric physical therapist pegged Will as a sensory seeking, gifted child. She said that when you have a gifted child, their brains like to work... a lot. He stands on his toes to keep sensation going. She equated it to sitting in church during a boring sermon. When you start to fall asleep, you move around to keep your brain stimulated and awake. Same for him, it's just all the time. If you have spent any time with Will, you know that his brain is ALWAYS going. I tend to believe that this why he started walking on his toes. Although he is walking on his toes for the sensation and not because of a physical deformity, the therapist is in agreement with Dr. K about having the surgery. She also mention that sometimes toe walking does return in sensory seeking kids.

We have a personal friend that is also a PT (but not pediatric). He said that if it were his child he would exhaust all other options before committing to surgery. He seems to believe that since Will is still growing, that the tendon and muscles should also continue to grow and stretch. (I believe that's what he said anyway. :) )

So, if you're keeping count, that's two orthopedist that say surgery by age 8. 1 PT that says Yes and 1 PT that says No.

Then, bring in another friend that is an educational consultant that deals with gifted children and knows about sensory seeking kids, too. (She's nationally recognized for her work, I just happen to be lucky enough to know her as a friend in real life and get free consultations! ;] ) Anyway, while she agrees that Will may be at a point where he does truly need the surgery, she suggested that we work through the sensory issues first while doing physical therapy and give it until August. When I mention the hard-wiring of the brain by age 8 (which will be September for Will), she enlightens me that while that is true for most kids, gifted kids don't hard-wire those motor skills until closer to 11. Good to know. :)

Today we went to see our chiropractor who also "votes No" to the surgery. He agrees that the sensory issue needs to be taken care of or the toe walking could just come back. Plus he, personally, had a similar surgery at age 12 and has had problems with his Achilles tendons his whole life.

So that's two more votes for No surgery, bringing the professional votes total to 3 YES and 3 NO. Nice, huh?

I now go back and forth on what the "right" answer is. I don't know that there truly is a right answer.

Please pray for guidance and direction regarding this decision. I need to turn this over to God and realize that no matter what Jeff & I decide, He is in control of Will's life.

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{And HERE is our decision}

8 comments:

Meagan said...

Well Becky its really a lot to think about and I know its hard not to worry about our boys...Yet I know you've seen God work through them and many other things in your life! There are a lot of ifs? and whys? in life and should or should nots? but we can only do what were lead to believe is the best for our children! I will lift Will and you up in my prayers for sure but be confident in your decision because we both know you are trying to make the best possible life for Will! God Bless and Best Wishes Keep me posted! Sorry its been so long since I've been on I'm trying to catch up! I was excited to see that you decided to homeschool and that it was going well..The boys also changed schools and our doing very well and love it!TTYS!

yummy wasabi said...

I'm so glad you posted this. My daughter is 3 and walks with her feet turned in. Beyond pigeon toed. She stumbled a lot after she learned to walk and still does sometimes. We took her to an pediatric orthopedic specialist when she was 18 months old and they told us exactly the same thing. They said, "If it's still a problem when she's going to kindergarten, come back and we'll take a look then, but it should correct itself over time." I learned a lot from your post. You are right, God knows best. I know I strive my best every day, especially as we approach challenges and decisions to pray that my will can be one with the Father's. He will never lead you astray and any challenge he gives us is for our learning and benefit.

Becky @ BoysRuleMyLife said...

Thank you, ladies!!! It was so SO nice to wake up this morning to these wonderful, supportive comments!!! I can't tell you how much it meant to me. Thank you! Thank you!!

laurel said...

Hey Becky!
I am sure this is a really tough decision. I don't have insight to offer but I will be praying for wisdom for you and Jeff.

Deborah said...

This is a huge decision. One I have the local Prayer Warriors working on - not to mention my own daily prayers in action!

My only wonder is if you showed the picture of the Orthotic Device to the P.T. that I sent and if that could be tried. If you decide to forego surgery, that device could be of great benefit to help keep him more on his feet than the balls of his feet. If this is purely habit / intellectual stimulation and he needs retraining, that device could help.... just a thought...

As a nurse working in the orthopedic field for 25 years now, although not the pediatric field, I am concerned about more time passing by. I just know that orthopedic problems can cause such disruption in the human body and that the quicker and earlier it is dealt with, the better for the patient and the quicker the recovery. I feel as your friend I should put that out there, but not as pressure... just as someone who does care greatly about what you are going through. I am positive you have many talented folks to help you work through this, but if I can help, please, please let me know.... If my opinion was not wanted, please just delete this. I don't want to offend... I just want you to know that I do care deeply....

Andrea said...

I understand the importance of this decision! And I know that you are not taking surgery lightly - it's definitely a risk.
I wish that I could give you advice. But my advice really wouldn't matter. You know that the Lord is who you need to hear from right now so that you can make a wise choice in a short amount of time.
So be in prayer - diligent prayer! He will answer you!
Blessings,
Andrea

Chef Penny said...

Logan has toe walked his entire life as well. He is now 12 and only toe walks about 10- 15 % of the time. The turn aroud for him began when we started agressively treating his sensory needs. A gentle reminder now will get him flat footed and he has learned other ways to get the sensory fix that he is craving.

His tendons are tight and he does do pt to stretch them among other things. But he has definetly improved.

He's a gifted kid too so maybe that's why it worked so late. I will lift you up in prayer too!

Mary@notbefore7 said...

Oh that photo looks like an all too familiar stance...

Glad all has gone well my friend!