Monday, February 23, 2015

Surgery Postponement

Oh my goodness I don't even know where to start.

I've postponed any surgeries for Elena.  It's good, and bad, in many ways.  I'll try to explain.

Over 8 months ago we started noticing Elena's crouch getting worse. I brought it up to her regular doctor, mentioning that her movements had become labored and her endurance/ability to carry had declined. He dismissed it as nothing. I was not pleased, but I didn't know what else to do. Our main PT suggested finding another doctor for a second opinion. I dragged my feet on this for lots of reasons.

At the beginning of fourth grade, her gait looked terrible--to me, anyway. Aside from occasional complaints of knee pain, Elena was happy. Fourth grade was (is?) challenging for her, but not as bad as last year. She is keeping up well academically and socially; physically she has different issues, but overall school has been very positive. Elena has been healthy and overall happy and rests well.

Then she started complaining of knee pain more often. Crying, sobbing, several times a week…so I started looking for other doctors. We went several times to her main ortho, hearing every time that "it's not that bad"and getting dismissed. That's when I started going to other doctors, driving myself crazy with ways to try to help change Elena's situation.

Then Elena decided to join the Drama club. Everyone supported this decision. She landed the lead in the school musical, and everyone made her strength/comfort a main focus to try to get through the final performance. She got a neoprene leg brace to attempt to deal with her ongoing tendinitis (just above her left knee-her main weight bearing leg), we cut her PT time in half, Elena started seeing a massage therapist, she got lots of rest and stretching. And we kept going to doctors.

Second Opinion (SO) basically said that it was time to do something. His recommendation was knee capsule release and slight lengthening of her medial hamstrings as well as ilipsoas; she would be in full leg casts for ~6 weeks, weight bearing immediately, then out of casts/rehab for another 6 weeks. I was upset my SO didn't agree at all with our main ortho. So I went to another doctor, recommended by SO.

A Gathering of Many PTs urged me to make sure doctors didn't touch her hips; her hip flexors may seem to have contractures, but they don't--she has good range, and they didn't think iliopsoas lengthening would help her get out of her crouch. They argued for a Therapy Exercise program specifically targeted to get her out of her crouch. I was (am) doubtful this would succeed-but agree that it would't hurt.

Third Opinion (TO) disagreed completely with hamstrings, recommended distal femoral osteotomies instead. I was so totally confused and upset--how can none of these doctors agree? TO's argument for osteotomies made sense to me, at least at the time.

I finally got Elena's gait lab report (that I couldn't read, as it wasn't formatted in a way I requested) and sent it to SO and TO, as well as a new set of E's hip x-rays. TO got back to me first, and conceded that her gait lab study indicated that she could be helped by hamstring lengthening OR the distal femoral osteotomies. I mentioned that I know when they do the osteotomies, frequently they bring down the kneecaps (patellar tendon advancement) at the same time and asked if we should consider this, as E has patella alta and tendinitis from the pulling on the kneecap. Doc said we'd have to do an x-ray to look at her knees; I said do it RIGHT NOW. So she did. Both of Elena's kneecaps are fractured from stress of crouch gait. (Docs suggest stress, not impact, due to nearly identical break--the right crouches worse than left, which is true and inferred by degree of fracture.)

Left Knee. Fracture is close to cap
Right Knee. Fracture is separate from cap

I was crushed-my child is breaking her bones just trying to get around as best she can. I went ahead and scheduled the osteotomies and patellar tendon shortening (they don't do advancement on growing kids) so I could have her ready for summer break.

Then I got a call from SO, who warned me "absolutely do NOT do the osteotomies" and we talked for an hour why not. He said it wouldn't fix her crouch gait. Period. He said after examining her films and gait report (which his office returned my data disc, and printed out a report for me with his notes and recommendations) that he stands by his suggestion of lengthening surgery. He said the broken kneecaps are upsetting. It doesn't always happen but he has seen it before. He answered my question well about "when do you surgically intervene in a growing child?"--"When there is pain, and/or when there is a decline in function". We definitely have both.

I got in touch with some families I know whose children had broken legs; I found that rehab (in typically developing children) is closer to a year than 6 months, as I had originally thought.


So.


I decided to postpone (indefinitely?) the osteotomy surgery. I immediately felt better about it. I was upset with myself--if it felt that wrong, why did I schedule it? Was it desperation? I never want to make a decision out of desperation. My first reason was she wouldn't be better by summertime; that was the main reason to do it at the end of February--after the play, ready for summer. Since that wasn't going to happen, the procedure was cancelled. I feel like others were hinting at me against the osteotomies--therapists, blog readers--but I wasn't listening. I wasn't open-minded enough? I needed more than a hint? I don't know. It's a lesson I'm glad I have the chance to learn. I feel like I am patient, but maybe not enough? I don't know.

I decided to give the PTs a chance. It can't hurt, and if decide to go with surgery it's better if she's stronger before any operation. I asked Theresa how long it would take to see results, assuming that Elena could do her exercise regimen; she said three months. This would end our exercise regimen too close to summer break to opt for surgical intervention afterwards, so I told Theresa I'd give her six months (until the end of summer).  If Elena could do it. If her pain is too much, we opt for surgery (most likely with the hamstring lengthening with SO).

There is also a clinical trial we might be involved in (more on that later) and some possible changes in bracing. Onward!

4 comments:

Anonymous said...

I am glad you are leaning towards lengthening surgery and stretching instead. If Elena were my daughter and based on my own CP experience(I have CP) I would opt for the PT stuff and lengthening. When I saw the X ray pics I was like "Ouch!" that was quite shocking. So I understand how you feel dear Amy. My doctors said my lengthening surgeries prevented what happened to Elena's knees. On a side note, if her bones broke that easily, does Elena have a calcium deficiency in her diet? If so it could explain her crouch being so bad because calcium helps the muscles to relax/release and her bones breaking simply from her gait. PLEASE LOOK INTO WETHER SHE HAS A CALCIUM DEFICIENTLY!!! It might explain her GI issues in your much older posts too.

Anonymous said...

HI AMY.. I JUST RECENTKY HAD AN ORTHOPEDIC APPOINTMENET, AND IT WAS DISCOVERED THAT I HAD AN OLD KNEE FRACTURE(RIGHT KNEE) AND A HIP FRACTURE FROM A FALL I HAD 3 WEEKS AGO..

CURRENTLY, I HAVE NO MOVEMENT IN MY RIGHT ANKLE AND BECAUSE OF THAT MY RIGHT KNEE IS BENT ALL THE TIME AND I AM ON MY TOE, THE KNEE WILL NOT STRAIGHTEN WHEN I WALK OR STAND.. THEREFORE, I HAVE KNEE PAIN IN THE RIGHT KNEE BECAUSE OF THE INCREASE STRAIN ON THE KNEE..

THEY SAID THEY COULD DO ACHILLES LENGHTENING BUT THST I MSY END UP WITH TOO MUCH FLEXABILITY BUT RIGHT NOW I HAVE NOME.. MY HAMSTRINGS ARE NOT CONTRACTED BUT THE CALVES ARE, AND BECAUSE OF THE SEVERITY THEY WILL NOT BE ABLR TO DO THE PERCS METHOD.. PLEASE I WOULD GRATLY APPRECIATE YOUR FEEDBACK AS WELL AS FROM OTHER READERS.. AS I DO NOT KNOW WHAT THE BEST THINGS IS TO DO ALL I KNOW IS THAT I NEED TO DO SOMETHING.. I HAVE NOT SLEPT STRAIGHT THROUGH THE NIGHT IN MONTHS

PLEASE I WECOME OPIONS.. THANKYOU MELISSA

Madalyn Oconnell said...

What a trooper! She sounds like she is making the best of it and what a heartwarming story about the school play. I would have loved to have watched that with my own eyes. I know that things will out the best for you, just hang in there and it will get better.

Madalyn Oconnell @ Steadman Hawkins Clinic Denver

Agnes Lawson said...
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