Surgical Consultation Recap (ongoing)

Things have been busy here.  Overall, things are wonderful, with the exception of Elena's gait/crouch.  So, we've had a few appointments to gather information.  Warning, it's long.

I made an appointment with another orthopedist, recommended from a friend.  So, we took the day off school and headed to Richmond to see Dr. Chester Sharps. Long story short; I like him, he's very personable.  Our meeting got pushed late (we had 2 other appointments that day, and we were the last appointment of his day), and while I wasn't upset at him, my patience had run out and I didn't present myself the way I had intended.  Basically, I wanted to say to him "So, what do you think?" and instead, all my frustrations with her current doctor came pouring out, and then we talked options.  Here's the options recap.

Elena has 9 problem areas (if you are going to address "all"), assuming her hips were fine (her last x-ray indicated they were, I found out later that x-ray isn't current enough).  From the hips down, they are: 1) hip flexor (iliopsoas) tightness/contracture, 2) adductor tightness (not terrible, though), 3) hamstring contracture (multiple, forgot the actual names), 4) patella alta (high kneecap, both sides), 5) knee capsule contracture (don't remember the name; basically her knee is caught in a contracture so it can't straighten), 6) femoral and 7) tibial anteversion, 8) severe pronation mid foot (rocker foot), and 9) bunion (initial formation of) on her left toe.

I was a little shocked at the list.  That wasn't really my question, so I had him remove any area from the list that wasn't really a problem with her movement.  I want to improve her "ease of movement", not have her just stand straight.  He removed any osteotomies from the list, stating that her anteversion didn't seem to affect the way she moved very much.  I asked if it would get worse, he didn't seem to think so.

We both agreed that the best course of action to protect her joints and have her move better is to get out of the crouch.  To do that, Sharps stated that one needs to approach it from two points:  hips and hamstrings.  If you lengthen hamstrings, you still have hip contractures, so you bend over at the hips.  If you lengthen hips, you can straighten from the thighs-up but are still bent at the knee.  This sound logical to me, but most docs don't touch iliopsoas b/c I guess they figure they are easier to stretch/small to operate on?  Not sure.  Sharps also noted that b/c E's knee is in a state where it can't be straightened, he'd do a knee capsulectomy (cutting the knee capsule)--basically making a cut so the capsule can be extended.  Because of the knee procedure, Elena would have to be casted above and below the knee to ensure stability and proper healing, for 6-8 weeks.  She could be weight bearing (think walk-like-a-penguin, which she can do a little).

Am I excited about that?  Not really.  When I look at a good time frame, it would have to be after the play (mid-February), still in the cold months (b/c otherwise casts would be too hot), ideally during school (she needs the distraction), and out to enjoy warmer weather and swimming/beach.

The logical time frame is right after the play.  She'd be out of her casts by her birthday.

I still wasn't sold, so I went to her regular ortho doc.  He's not a friendly guy, but I think we have a good professional relationship, and he's known her since she was 8 months old.

He saw her walk 10 feet with her crutches.  E was petrified of him, and she stood much taller than usual, not an accurate picture at all.  He said "Do nothing.  She's not that bad."

Now, I'd agree with him if Elena gave him an accurate walking example.  Or if he watched her move for more than three minutes.  Or if she wasn't crying from knee pain two times a week.  Or if her endurance was better--it's one quarter of what it was this time last year, and she's hasn't grown much.  Or if she was safe at home--she's started falling, including once down the steps.  Or if she could still carry something.  How is this picture not that bad???

We have tried almost everything we can think of.  Botox is out--it doesn't work anymore, and it doesn't do much in the first place; she gets daily stander time (in school and home), PT (in school and private), we stretch her every night.  She wears a night brace.  She wears a daily compression brace to try to alleviate tendinitis pain.  We see a massage therapist.  She sinks into her crouch and relies on her hands to try to keep herself from falling.  She is exhausted from just trying to move.  This is NOT the way it used to be.

*sigh* If I've learned anything from these consultations, it's that I made a gross misjudgment with our regular orthopedic doctor.  I assumed that since we've been seeing him since E was a baby, he'd know her better.  I thought he'd kind of know her trajectory, know what to expect, based on where she'd been.

THAT'S WRONG.  Doctors see all kinds of patients every day.

He doesn't remember us, he sees us maybe three times a year.  It's a snapshot.

Which makes me wonder why I put so much weight into his opinion, when one of his colleagues recommends something completely different.

I am trying to keep an open mind, but it's difficult.  As far as something noninvasive, no Botox.  PERCS could be fine for hamstrings/hips (that's basically what they'd do anyway), but it won't help her knee capsule.  I've heard of alcohol/phenol block, but again, that won't help the knee.

Of course I get the fact that no one wants her to get worse, given the potential with surgery and scar tissue or something going wrong (remember, no bony stuff here, just soft tissue). And I know very little of knee surgeries--my guess (?) is it's relatively minor, just to give space, not like reattaching the achilles or something.  But if I do nothing she still gets worse.  Her crouch is a negative feedback loop--sink, less stability, causes pain, sink more.

I assume that if she gets out of her crouch, she will have better ease of movement.  Am I mistaken?  Anyone have experience with this surgery--not osteotomies--to get out of a crouch position?

She was in a good place for the past 5 years.  So, I guess that means we were doing a decent job of keeping her stretched and moving until her growth (?) or daily expectations (school, home, responsibilities, etc.) increased to the point where she needs more than what we are currently providing.  

Anyone want to weigh in here?  I appreciate your comments.