Removal of Precice Nail

Surgery #9: Mary had the Precice Nail removed approximately 17 months after it was put in (June 2019). Overall Mary said it was the best she felt after any procedure!

1st Surgery, age 9

9th Surgery, age 17

Unfortunately, it was just Mary and me because of COVID, usually her father and I are both there. She also has a new doctor. So although it was surgery #9 and would have been very routine there were some big differences for us personally. 

No Dr. Scott smiley face to mark the leg and due to a rash from the last surgery we requested they not use glue so that is written on her leg.

Pre-op

Saying goodbye before she walked back for surgery. 

We saw the medical device rep who was there when they inserted the Precice Nail and who would be in the operating room with her again. It was nice to see a familiar face with all of the changes.

I got to wait in the cafeteria where we normally wait, I wasn't sure it would be open with Covid.  I said goodbye at 7:45am and she went to the Recovery room at 10. I was called back at 10:20. 

Luckily they were able to get all of the hardware out! They did have to dig a lot so the doctor thought she would be pretty soar. 

Mary woke up quicker than they expected her to and she was shaking a lot so they wrapped her in a lot of warm blankets. 

An hour later she was feeling good. So she got her IV out, dressed and we headed to the car at 11:35.

At home she was comfortable with Tylenol and Advil. She took Tylenol, then 3 hours later took Advil. She did that for 3 days, then took Tylenol only. 

At home, Day 1

4 days after surgery she went down to one crutch and when moving within a room, didn't use a crutch at all. 

She didn't take any pain medicine and starting using crutches only when outside the house starting Day 6.

Couple of issues that came up: 

A day after surgery a weird bubble appeared under her dressings, near the wound so we went to the doctor and they re-dressed the lower wound. 

Two days after surgery, she developed another itchy rash on her leg again, like last summer. Last summer it developed 2 weeks after surgery. We saw an allergist after 3 days and she advised it probably wasn't related to the glue or anything else because the reaction was too late: 2 weeks in 2019 and 2 days in 2020. I believe in Mary's theory, her left leg has had enough and it reacts in a itchy rash. Luckily, this time it was controlled by Benadryl prior to seeing the allergist. The the allergist advised to use Zyrtec and Benadryl as needed and the Zyrtec knocked down the rash so she didn't need Benadryl after 3 day of being on Zrytec and stopped using Zyrtec after a week.

 

10 days after surgery she started using a stationary bike.

So in summary, pretty easy procedure!

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.