Consolidation update

Mary had a doctors appointment on Tuesday and consolidation is still progressing very well.

X-ray from August 13, 2019

X-ray from July 22, 2019

The bone on the left side away from the surgery site continues to consolidate very well and now you can see the consolidation barely coming in on the right side. The x-ray on the right is from 3 weeks ago.

Mary is still using one crutch and her doctor thinks she will continue with one crutch until October (4 months after surgery).  

There are some changes though. Mary no longer needs a shower chair and for short times at home goes without her crutch. Her doctor said to try for short periods at home. She can't do it at school because she would get too tired and you don't want to get into the habit of walking and leaning. 

We took a fun picture using the blocks they use for x-rays that show what Mary has achieved. 

External Fixator at age 9 = 6.6 cm represented by blocks on left

Internal PRECISE Nail Lengthening at age 16 = 3.4 cm. represented by block on the right

For a total of 10cm. combined.

Consolidation Is Going Well

Mary had a doctors appointment yesterday and had two x-rays. 

The first one shows the bone is consolidating really well on the left side. 

• Her doctor explained that the bone opposite of the incision site grows back faster which is what the x-ray shows. 
• Her Physical Therapist explained that the bone grows with a bulge then thru time the body absorbs the extra amount.

The second x-ray is a lateral view and it does show the bone is growing on both sides.

Since the consolidation is going well, he cleared her to full weight bearing with crutches and to move to one crutch once she can do it without leaning. 

We will see him again in 3 weeks.

He stated she may be all done by the Fall or Christmas. I was originally told 4 months which would be October.  

3 cm!!!

We went to the doctor on Day 30 and confirmed Mary was at 3 cm. - the goal!

June 11: Before lengthening

July 9: 30 mm/3cm

The Physical Therapist spent a lot of time working on her to help her stand as straight as possible to get a standing x-ray. 

Standing x-ray

Then her doctor decided:

• she should take 3 days off of lengthening and 
• then continue lengthening if she could tolerate it. 

He said the additional 3 cm she had gained will have huge benefits the rest of her life because that should leave her with a 0.5 cm difference but he wanted to see if she could get more length because she will likely lose some length she has gained when she has a foot surgery later.

We had to get a new RX for the lengthening device and the medical device company contact stated it was common to take a break at 2.5 cm then begin lengthening again.

The other good news is that Mary appears to be producing a lot of good bone!

Taking 3 days off did help Mary's comfort level and she was able to lengthen another 3 days.

We went to the doctor a week later and officially decided to stop lengthening. That meant she could also lose the knee immobilizer!!! 

So the hardest part should be behind us. Now we expect 3 months:

• of bone consolidation, 
• getting weight bearing privileges back, 
• regaining range of motion in her knee, and 
• learning to walk with a more even body.

Pain Started

Day 18 of 30 Mary started getting uncomfortable. We were surprised because other than the rash to the skin glue the internal leg lengthening has been going smoothly and usually things start getting uncomfortable around 5 cm. and she was at 2 cm.

On Days 21 and 23 Mary was so uncomfortable she had to stay home versus do  activities that she did the week before. One day she described it as it "felt like her quad had done a million squats."

She had to keep moving positions to try to get comfortable and had trouble sleeping a couple of nights. 

The good news is after seeing her Physical Therapist on day 24 and learning she was really tight and needed lots of massaging we backed off some PT and we focused more on massaging and it seemed to help.

We go to her doctor in 2 days and we are hoping he confirms we are at 3 cm. and she can stop lengthening and begin the consolidation phase and weight bearing.

2/3 done!

Mary had an x-ray on Friday and she has lengthened 19 mm so she is still tracking the 1 mm a day! 11 more to go!

June 28: 19 mm

June 11: 1 mm

She also had a lateral x-ray of her knee to make sure there is no slipping and there is none.

The lower metal is an 8 plate from 5th grade

We will go back in a week and a half. She will get a standing x-ray and she should be done lengthening.

Rash to Dermabond skin glue

The magnetic internal leg lengthening has been going very well except 2 weeks after surgery Mary developed a rash to the skin glue. She was prescribed a topical to apply twice daily, Triamcinolone but the rash spread away from the incision sites so 3 weeks after surgery she went on a 5 day dose of Prednisone.

rash near incision

rash away from incision

The itching is disappointing.

One Week of Lengthening = 2.9 mm

Mary had an x-ray today and she is on track. In one week the space between the broken bone has lengthened 7.9 mm. The goal is 22.1 mm more. If she stays on track she will be done lengthening around July 10, then she can become weight bearing and the bone consolidates. 

June 11
(paperclip was taped to outside of leg for x-ray)

June 17

First Internal PRECICE Nail Leg Lengthening session (post-op)

Mary had her post-op appointment today. 

• We learned the CT before surgery shows a 35 mm discrepancy. So the goal is to lengthen 30 mm. (Her foot is fused and she toes down so we can't go for the full amount.)

• They removed the gauze from the incision sites and we saw the mark that indicates where the PRECICE device is in her leg (The mark stays on the whole time of lengthening (approx. 37 days) so you know where to put the machine to lengthen and where to take the weekly x-rays to monitor bone growth.)
• The happy face is her surgeons traditional mark to indicate the correct leg for surgery.

There are 3 incisions: 1. top to insert rod and 2 screws, 2. middle is where the bone was broken and the device was inserted, 3. lower one is where 2 more screws are to stabilize the rod.

PRECICE Nail Lengthening Device

PRECICE device in suitcase

Device positioned on leg for 1st lengthening session. It is loud so you know the magnets are spinning.

Yes, that's a paperclip taped to her quad for reference for x-rays

Mary will lengthen .5 mm two times a day. You shouldn't have any metal close to the device when lengthening, and it needs to be within 7 cm. to work.

Mary needs to work on hip and ankle range of motion during lengthening but she should not bend her knee more than 30 degrees. She will work on her knee range of motion once the lengthen is done. 

Internal Leg Lengthening Procedure

Mary had the PRECICE Nail (internal lengthening) procedure on Tuesday, June 4. She went back at 12:45 and they called around 3pm to say they were testing the magnet, closing her up, and moving her to recovery.

We talked to her surgeon around 4:15 and he said she has good strong bones and everything went well but he is "mad at her ankle" and he really wants her to work on stretching her Achilles. (That means we will be looking at another surgery at a later date.)

We saw Mary at 5pm and she looked very good. She had finished the post anesthesia shivering.

She was moved to her regular room around 6pm.

Mary had an "On Q" nerve block and an additional shot. The shot wore off around 7am the first morning but the nerve block lasted 3 days and was wonderful!!! She had very minor pain.

Mary met with the Occupational Therapist the 1st morning and learned how to sit, stand, and sit in a chair.

She met with the Physical Therapist around lunch time and was thrilled to walk and get bathroom privileges back.

The second day she learned how to go up and down stairs then was cleared to go home!

Mary started having a little pain when moving once the nerve block ran out on day 3 but very minor compared to the external fixator procedure without the nerve block.

We went into this very hesitant, hopeful it is as "easy" as people say but so far I have to agree it has been a "breeze" / "dream" compared to the external fixator. The "On Q" nerve block is a huge part because they surgically they still cut a bone.

Here we go again (Internal Leg Lengthening)

Mary has had:

1. an external leg lengthening at age 9,
2. an 8 plate in her knee on her shorter side and an attempt at a foot straightening at age 11, and 
3. an epiphysiodesis (stop her longer leg from growing the height it would have without the procedure) at age 12.

Then I assumed we were done (and honestly I was a little burned out and needed a break) so I was very surprised at a doctors appointment at age 15 that they were excited about doing an internal leg lengthening on her femur. 

I needed time to process- I guess I should have seen this in our future because it was casually mentioned as an option but I dismissed it every time because Mary was very mobile had had minimal complaints.

I had a good conversation with the PA that helped me:

What do we hope to achieve?

• Minimize leg length difference to improve gate,
• minimize toeing down and landing on outside of foot, looks like there will be a foot surgery at some point and the lengthening will make the foot surgery more simple,
• have found when length is 2cm + different there are more problems down the road- as an adult with back, etc.

What happens if she doesn't do it?

• More complex foot surgery when she has it (2 phase vs. 1)
• Leg length difference will remain and the older you get the tighter everything becomes

What changed from 2017 to move this from a maybe to a "need to"?

• Medical technology is better: patients tolerate it so much better, and is more straight forward
• The difference is still big and in the past without the magnet would have just tolerated but now can make it better

Range for the Ex-fix that was "easy", or most kids got, and a range where it got more difficult..

• at 3 cm, more in the "easy" range
• at 5 cm nerves start getting tight

Are issues with nerve pain common at 3 cm?

• No since well under 5 cm, will be watching Mary’s knee, that’s why she will use a knee brace

With the Ex-fix there is a specific ratio of lengthening to consolidating - is there a similar ratio? If we did the Surgery on June 1, and lengthened for 30 days (plus first 7), when would you expect the patient to be fully weight-bearing?

• No specific ratio because everyone heals differently but ETA is 7 days after surgery, start lengthening for 30 days,
• At 4-6 weeks on one crutch, slowly become more weight bearing
• 3 months after lengthening, should be walking with a good gate again
• Teens consolidate slower but they can use a bone simulator if necessary
• So plan for the whole process to take 4 months

How long is the surgery?

• 2.5 hours of his time to put it in
• Less than an hour to take out

How often will we see him post op?

• Just like last time, weekly for the lengthening, then if consolidation is going well can start to push out

How often will we see PT post op?

• Initially all range of motion with hip, (1x a week)
• then strength training and gate therapy (2x a week)

When does he remove it?

• No sooner than 6 months but typically 8-12 months

Do you have to cut the bone to put the rod in?

• No, they make a 2 inch incision at the hip and tap it in the hollow section, then they advance it down, then they cut the bone in one place for the lengthening, put three screws in knee (2 screws at hip) to hold the rod

How do you take it out?

• Threads into the rod and pulls it out back thru the hip

How often do you wear the knee brace?

• Take it off to shower and sleep (on when moving around- he may have her sleep in it initially

Can you bend knee in brace?

• Some but the whole point is not to so the tibia doesn’t rub on the femur

I talked to two mothers that have gone thru both an internal and external lengthening and they described it as "a dream" and "a breeze" compared to the external lengthening we have been thru so we set the date for June 4.