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!

Surgery Decision, Mostly Made

After three different doctor visits, a lot of time thinking and gathering information, I think a decision has been made (pending a few phone calls).

We are going with a different orthopaedic doctor.  She recommends  a distal femoral osteotomy, in both legs.  If this is the only procedure, Elena won't have to wear casts--just braces that we can remove if needed (bathing, etc.).  She may have something done with her patellar tendons; I'm not sure yet.  If she does, she'll need to be in casts for 6-8 weeks.  

That's the short version, anyway.  Her hips are fine (shallow, but fine).  The distal (femur end near the knee instead of the hip) osteotomy makes sense to me, given her femoral ante version and how badly her knees are angled toward her center line.  If this helps her posture/gait, which is the intent and which the doctor believes it will, less pressure should be on her knees/ankles/big toes, which should help alleviate (or at minimum, not worsen) her issues related to her crouch.  

The majority of stories I read related to surgery regret seem to focus on procedures involving the hips.  Has anyone had a distal femoral osteotomy (not involving hips) out there?  What was your experience? Are you glad you did it? How was recovery?

The procedure, as far as I understand it, is relatively simple and the cut site gets some sort of "cap" on the bone, which is supposed to make the overall process (including recovery) quick.  This doctor believes that changing the bony structure is a better way to help crouch gait than lengthening tendons.  I'm not sure I believe this, but regardless--I do think that in Elena's case, the osteotomies should yield good results.

I look forward to any and all comments.  

Tendinitis

The verdict is in!  Doctor says Elena is suffering from tendinitis (left patella).  This isn't a huge surprise, but I'm glad she saw a doctor--I wanted to rule out anything more serious.

But...how do you fix E's tendinitis when her regular method of movement is constantly pulling on her left kneecap?  If she rests too much, she gets super stiff.  If she doesn't rest enough, she will just make her knee worse.  I have seen over the past few days her pain starts earlier and earlier in the day.

So, it's the "full court press" plan.

She got an ace bandage at the doctor (I had been using Coband at home, but we ran out) and I learned how to properly wrap her knee.  Elena loves the compression, she says it feels much better with it wrapped up. 

She'll be fitted for a neoprene knee brace.  It's still pretty hot outside here, so I'm not so sure how she will tolerate it.  We'll see once we get it.  I assume she is going to love the feel of it, given her experience with compression so far.

We discussed using knee immobilizers for a while at home.  We still have her old ones...she already enjoys her stander (it's her only comfort standing up) so I'm not sure if the immobilizers would be a better choice.  The doctor assures me she can walk in them...I disagree, but we could try it (especially if only on her left knee?).

The doc said she could benefit from more flexion at her ankle, to give her less stress on her knee when moving.  Meaning, a different brace than her KiddieGait (or no brace at all).  This will be trial and error at home--not to mention, how can we work on this when she is supposed to be resting?  Finding a right balance here is going to be a real challenge.

I had mentioned patella straps that runners use--they wear them right under their knees to prevent/alleviate tendinitis pain from running.  Doc says we could definitely try it.  Now I have to see if they make them small enough for Elena (my guess is she's the size of an average 6 year old).

General rest and stretching at home.  

I mentioned that we LOVE LOVE LOVE our Dynasplint brace.  E wears it every night, she says it feels good to wear it b/c it's the only brace that she can move in, and it's a great stretch.  E normally wears it on her right leg, b/c that's the leg that is tighter.  Doc gave us a prescription for another one, so she can have both legs stretched in a way she approves.  (I am really excited, b/c this brace is expensive.)

At school, the plan is for Elena to participate at a lower level of intensity for PE and recess.  When in the school, she must use her crutches to ambulate out of the classroom (frequently she'll just walk or touch the wall, or use just one crutch).  When sitting, they'll elevate her left knee. 

I guess we do this for 2 weeks, and reassess.  Heck, it will probably take that long to get her neoprene brace!  I think tendinitis is going to be more of a reoccurring phenomenon, given Elena's general method of walking.

Thank you for your comments, especially if you have CP and have experienced knee pain.  Your experience is very valuable to me!  If you can think of any activities that might help us, please comment.  I'd especially like advice of how to be active and not aggravate her knee pain (if that exists).