Post-Op appointment with Dr. Standard

Tomorrow, we are 1 week post removal surgery and headed home after Ava's PT appointment!  She is so ready to be back home, see Carter, and go back to school on Monday.  She honestly cannot wait!  My schedule will be insane for the next week as I have to fit in 8 sessions and a night of 6 family minisessions in 6 days.  Ack!


We had our post-op appointment with Dr. S today and he addressed our concerns about ROM (range of motion) in Ava's hip flexion and her knee bend. Basically, he said to chill out.  He is a very calming person and he does NOT overreact to things.  One of the reasons that we chose him to take Ava's case is because he sees so many Perthes patients and often takes the hardest cases.  So we know he has literally seen just about every possible complication and outcome.  Ava was originally not supposed to be a 'hard' case, but her underlying tightness was a concern.  Dr. S. said that when he took the fixator off in the OR, he assessed her ROM and was able to flex her hip 80-90 degrees (when she was under anesthesia).  Therefore, whatever is going on that is preventing her from flexing her hip more than 30 degrees is not actually in the hip itself.  It may be that Ava is perceiving pain and tightness and 'locking up' the joint and she just needs to stretch it little by little and get used to that motion again.  He said that her knee did not bend at all under anesthesia and said that it may be a long time before her knee bends to 90 degrees.  :(  But he does not anticipate that either her hip flexion or knee bend are going to be long term problems....depending on your definition of 'long term'.  He did say that is a slow journey and not a race for her.  We are not to expect her to go from 30 degrees tight to 90 degrees in a few weeks.  It may be a month...or two.

While I am very relieved that he isn't concerned that there is something really 'wrong' with her hip, I am not excited about the prospect of dealing with this inability to bend at the hip and at the knee for months longer.  It is very difficult when she can't sit in a regular chair (or her desk at school).  And she is fighting stretches both morning and night because 'it hurts'.

The really good news was that her Xrays look very good!  He said that her hip looks "perfect" and her abduction is really good (which is why the brace isn't hurting or bothering her).  The head of her femur is round with no malformations, 'knuckles' or 'divits'.  They couldn't get the second angle on xray because you have to be in a froggy position with both knees bent in order to get that one and Ava can't bend her knee.  So there is a chance that the ball isn't as perfect as it looks on the one xray image, but if that is the case, it is only slight, so that's no concern.  The head is completely inside the socket where it's supposed to be, which is a big plus!  So if she can maintain her range of motion, this is a very, very good outcome from the fixator surgery.  It would mean that she wouldn't need any further surgeries unless something changes in the future.

This is the frustrating and difficult thing about Perthes Disease.  There is no way to tell how it will end up.  First, no two cases are the same and no two outcomes are the same.  So, you can't compare your child to any other child - or your child's progress to any other child's progress.  There are so many factors that go into Perthes Disease that even just deciding whether or not surgery is the right option is overwhelming. You can't look to other kids and say, "Well, it worked for Rylan and Reese, so it will work for Ava.  Their cases are all different.  Age, gender, range of motion, containment, rate of collapse, amount of involvement, etc. are all factors.  Then once you decide on a treatment plan, there is no guarantee that the treatment/surgery will work perfectly or that the outcome will be positive even if that surgery goes well.  I have heard stories of children who had fixator surgery, it looked wonderful and then the child relapsed - even years later.  They started to lose range of motion or have unexplained pain or need another fixator or osteotomy surgery or total hip replacement surgery, even.  It is a frustrating disease with many unknowns.  So, the only thing we can do is take the positive milestones as they come and work through any challenges - hoping and praying that we will continue to have good days.

Our mantra is going to be stretch, stretch, stretch.  Range of Motion, Range of Motion, Range of Motion....until we just can't take any more.  The more she moves, the better - we are going to figure out how to get her in the pool as much as possible and maybe look into equine therapy.  Apparently being on a horse is great therapy for Perthes, so I need to figure out if that's an option for us.

Ava quickly posed with Dr. S as he rushed out the door to see another patient.  He was very busy today - probably the least amount of time we have seen him yet at an appointment - but he made sure to stress that we were to stay the course and he will see us back in 4 weeks where we will decide what to do if her ROM hasn't improved.  So, it's back to Virginia Beach tomorrow and starting up with PT at CHKD again on Monday.