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. 

Epiphysiodesis Procedure

On Thursday morning Mary had a "distal femoral epiphysiodesis using the phemister technique" aka a procedure to stop the growth in her growth plate in her longer leg in hopes to allow her shorter leg to grow and catch up to minimize her leg length discrepancy. The current discrepancy is approximately 3 cm.

This was procedure was number 7 for her fibular hemimelia. The first 5 were all associated with the external fixator in 2012 at age 9, then at age 11, she had an 8 plate put in her left knee and work on her left foot to help straighten it out. Mary is now almost 13.

• We had the first surgery time at 7:30, 
• Mary was more nervous for this procedure than I anticipated (older and wiser I guess),
• Dr. Scott's portion was only 37 minutes and we were called to recovery right before 9:00. 
• Other than shaking from the anesthesia initially (reminded me of me after by my deliveries of the girls), 
• recovery was fast and we headed home at 10. 

• We bought a machine that allows cold water to constantly "ice" the area for the first 48 hours (you do check the skin periodically and there shouldn't be direct contact with the skin). Insurance didn't cover it but we assume she will have more procedures, plus her parents aren't getting any younger and anyone can use it. We think it helped recovery a lot.

Mary has a strong pain tolerance. Although they prescribed a stronger pain med because the procure involves bone pain she only took over the counter ibuprofen at home. It is always nerve wracking going into the first night after a procedure because of concerns of pain management but Mary slept all night. Her first real discomfort after the procedure wasn't until 5:45 the following morning. Even then she said it was sore not painful. 

She really wanted to go to school the next day but the hardest part of the procedure has been using crutches. Her shorter, weaker left leg has to support her body since the procedure was on her stronger, longer right leg. She was unsteady as a result. 

She is very mature about the medical stuff and she realized it's better not to push too hard too fast so she can have a shorter recovery in the long run. If she went to school she also couldn't use the ice machine that seemed to be helping so much. 

It is day 3 and Mary hasn't had any medicine, she has iced a little bit and even practiced walking without crutches. 

So this procedure has proven to be "easy" as the medical world says it is. Medical easy isn't always easy in reality :-)

The procedure is a gamble because there isn't anything to precisely determine the best timing. You don't want to do it too early so that the short leg turns out to be longer than the longer leg that had the growth stopped, and doing it too late means its kind of wasted because the shorter leg doesn't get to catch up very much. Dr. Scott says it appears we have gotten pretty lucky, the growth plate looked like it still has some growth in it but not a ton. We have to wait and see the true success in 18-24 months when she should reach her adult height. She is almost 5'1".

Pre-Op for Epiphysiodesis

We had Mary's pre-op for the Epiphysiodesis on Wed., Dec 12. 

• On the longer leg Dr. Scott will make a small incision on each side of the knee,
• He will cut less than a cm. square piece of the bone (distal femur), twist it 90 degrees, and reinsert it. 
• He will also scrape the growth plate really well because he wants to make sure that growth plate stops growing.
• They explained by just doing the two sides it confuses the bone enough to stop growing in that area.

• He did take another standing x-ray with a 3 cm block and confirmed he wants to keep the 8 plate in her left knee for longer, he says sometime it rebounds a little when you take it out

Other surgery info:

• No liquids after midnight the night before
• Surgery would be cancelled if she had a fever of 100.5 and/or had a very productive cold or hacking cough
• We currently have the first time slot (because they know we will be on time :-) ), unless a small baby needs the slot.
• The actual procedure is only 45 minutes so she should only be away for 2 hours.
• They will give her local pain medicine (Novocain) before they close her up, and bandage the knee.
• She should have loose sweats to wear home, no yoga pants
• She will be weight bearing as much as tolerated, use crutches if need to originally
• We said we would pass on the wheelchair offer
• As she knows from before the more you move the better
• PT is optional, sometimes the knee loses range of motion
• We have a pain medicine for at home, advises to stay ahead of the pain initially (as usual)
• He is going to order "the ice man" for us which wraps the knee and surrounds it with cool water to help reduce pain and swelling.
• Her dad was good to think about the orthodontic forsus (a metal version of rubber bands) Mary has right now for her braces. We were given the chief anesthesiologists contact information and was advised to have it removed for surgery because it limits the mouth opening. SO she is off to the orthodontist to have it removed.