Surgery Date

Dr. Scott's surgery scheduler called on Friday. We are scheduled for surgery on December 10 at our favorite hospital (yeah!) for:

• at least the removal of the 8 plate in her left leg. 
• If we decide to do the Epiphysiodesis (which restricts the growth of her longer leg) it's not a problem to add it since we are already on the schedule.  

We will know the definite plans at our next appointment in September.

Unlike past surgeries where I pro-actively called to schedule I was bummed to get the call.

The surgery date is a week before she is out of school for the holidays which I was bummed about but when I told Mary she wasn't bothered by it. It's nice that she is older. I can tell her what's going on and if she's not bothered I can let my own concerns go. 

This is the LAST surgery that we have been EXPECTING but I have learned to not expect it to be her last. 

It will be nice to have both surgeries: the leg lengthening and the potential Epiphysiodesis that we have known about for 12-13 years behind us.

8th plate 12 months later and next steps

Today we saw Dr. Scott. Mary had a standing x-ray done while using a 2 cm. block. 

Unfortunately, her leg wasn't as straight as he would like during the x-ray for a more accurate measurement.

8 plate - is straightening her short leg/ inserted 13 months ago

We discussed:

• the 8 plate is straightening her leg and he would like to keep it in until December 2015,
• He is guessing she has a 3.5cm difference and he would like to get her closer to a 2cm or less difference to minimize discomfort as an adult
• There are 3 choices:

1. do a 2nd lengthening using an external fixator- no one is really leaning towards that option
2. stop the growth of the "normal leg" which has been mentioned since she was diagnosed at 5 months old
3. use a new internal lengthening device called a Precice. He has used it about 4 times so far and it has been successful. He is about to use it on another patient and he will let us know how it goes.

Now that Mary is 12 she has a big say in what we choose. 

I asked about doing nothing and leaving the difference as is but he does not recommend that- bummer!!!

We will see him in Sept. to check in and do another standing x-ray using a 3 cm block, and a hand x-ray to check on how much growth she has left. She is projected to be around 5ft 4in. She is currently 5 ft tall. On average girls stop getting taller around 14-15 years old.

At the moment the plan is to have an outpatient procedure in December 2015 to remove the 8 plate from her left knee. She will be sore for a couple days afterwards. At the same time he would go into her "normal" right leg and stop the growth. She will be sore for a couple weeks from this procedure.

The only things that ever bugs Mary at times are:

• her ankle can be stiff in the morning,  
• her foot can get sore if she has been really active, 
• Interestingly, sometimes she can feel the nerve tingling in her foot like she experienced in her leg during the ex-fix lengthening. He asked her to tap above the area next time it happens and let him know what happens if anything.

PS: I just reviewed the choices with Mary and she is very mature. She sees the downside to all 3 options:

• another lengthening doesn't sound great,
• she is nervous about the Precice being so new, 
• she isn't sure about being shorter than she would have been and she may not want to do anything on her right leg, only the left. 

The nice thing is there are options and we have time to decide...

Doctor Appt.

We saw Dr. Scott in Nov. I think we were nervous to see him because we were afraid of what he would tell us we needed to do next and we are a little burned out at the moment.

He saw 4 things:

• knee doesn't completely straighten
• leg length discrepancy of 2 cm.
• the pain she sometimes has on the side of her left foot is because she walks on the side of her foot
• she "toes down" because the lack of flexion in her ankle

He took a new x-ray and compared it to the last x-ray in July and verified the left leg is getting straighter with the 8 plate in the left knee. ETA for removal is summer or maybe later depending on her growth.

The lack of flexion in her ankle is new and he may want to put an 8 plate in her ankle when he removes the one from her knee to help the ankle.

The procedures don't require a lot of recovery. She can walk but may need a boot if it helps the soreness. 

He doesn't want to see us until May when we will schedule a date to remove the 8 plate from her knee but he doesn't want us to schedule our summer around it. We will squeeze it in between trips/camp.

We may also still do something for the additional leg length discrepancy at some point too.

Go back to PT for tune-ups as needed for example if walking gets stiff.

8-plate 3 1/2 months post surgery

We saw Dr. Scott a week ago, 3 1/2 months after her 8 plate surgery.

1st she had a standing x-ray

They had her stand on a 2 cm block because they wanted to check her hips/knees

The Physicians Asst. (who we had never met but she knew Mary's case) said her hips look good.

8 plate in left knee

After examining Mary, Dr. Scott said there are 3 things going on: 

• ankle range of motion, 
• knee isn't completely straight yet, and 
• knocked knee 

along with the additional leg length discrepancy but he doesn't want to do anything right now. 

The PT will hopefully help the ankle range of motion and getting the knee straight. 

The 8 plate is in to mitigate the knock knee and possibly gain some length.

He did mention doing an in depth gait study soon to find out exactly what is creating the issues. 

I have a video of her running but I am having trouble uploading it.

Mary also toes in so he suggested some PT for that and the Physical Therapist recommend we try wrapping a certain bandage around her leg to make her mindful to try to point her toe straight. We have ordered it but haven't tried it yet. 

We will go back in 4 months.

Walking Smoother

I think Mary is walking smoother now. 

• It has been 3 months since her 8 plate and foot surgery. 
• It has been 4 weeks since she got the walking boot off.

Limping A Lot

It's been 2 weeks since Mary got the walking boot off. She is still limping quite a bit. 

She has been to PT once and we have been doing the exercises at home. She has 15 more PT visits to use they were just busy initially so it was hard to get in to see them.

She has been active, walking the dog, riding her bike, etc. and her foot and knee hurt her at night. At night she has been soaking in Epson Salts, takes Tylenol and uses Biofreeze to help her sleep.

I just looked back and it looks like it took 6 weeks after the fixator/cast was off to start walking smoothly. Good to know...

Free once again- no walking boot!

Yesterday we saw Dr. Scott and Mary no longer has to wear the walking boot and is clear for all activities!

At this point he really wants her to start using her leg and doing PT so we can see where she is at. He is hoping she gets the last 10-15 degrees of range of motion in her knee back from PT.

We asked about why Mary's knee "locks up" once she has been sitting. When she stands up she has to push down on her thigh so she can begin to walk. He thinks it is re-aligning her bones. 

Mary wanted to know when the 8 plate will be removed and he is guessing a year from now.

I asked about the 2 marks on the front of her shin (one was discovered after the last cast was removed and the other one showed up later - it might be a scratch) he is guessing they are from poor blood flow in that area.

Good news is he doesn't want to see us for 2 months unless something comes up.

before surgery April 2014

2 months after surgery June 2014- I can't tell from the x-ray that the foot is straighter but it does look straighter in real life

Picture in the parking lot- this is as straight as she can get her leg at the moment. 

She was off riding her bike that afternoon

We haven't been pushing her to do a ton of PT while she had the casts and walking boot but now she will have to focus on it again to help her regain a good gait.