Wednesday, May 6, 2015

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...