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Friday, January 31, 2014

The Big (Tethered Cord) Plan

Today we saw Dr. Moss, Madi's neurosurgeon.  He's not only an amazing neurosurgeon, but he is also gentle, takes his time, and he truly cares for each of his patients.  Dr. Moss has been Madi's neurosurgeon since before she was even born.  We love him! 

I talked to Dr. Moss about everything going on with Madi, from her head to her (sweet little) toes.  He agrees that it sounds like she may have a symptomatic tethered cord.  She has multiple tethered cord symptoms going on right now... renal reflux, tight left heel cord (that was released but re-tightened, even though we work on standing daily in HKFOs), scoliosis (that may be worsening), and spastic bladder.  Before deciding about surgery, he would like to do a big bang MRI and a full spine MRI, which we can then compare to the MRI she had about 2 years ago.  The plan is to go in for the testing, then go straight to an appointment to see him.  At that appointment, we will determine if we are going to do the tethered cord release surgery or not. 

We did get some really great news at the appointment, and I am so thankful for that!
  1. We would do surgery at Cardon Children's Hospital, as he now works there primarily, instead of at Phoenix Children's Hospital. I was nervous about this, as we have only been there in the past for visits, and I do not know their policies and the such.  He assured me that if we do surgery there, I can go in with her while she is going under anesthesia and that I can stay with her during her entire stay, even if she ends up in the ICU.  I told him I've heard stories of families (in other states) not being allowed to stay with their children in the ICU, and he assured me he would never let that happen.  I feel SO much more confident about being at Cardon now. 
  2. If we do the tethered cord release, he would like to do an aggressive release.  He does not feel that she will loose any mobility or sensation from the surgery, which is always a risk.  He also thinks that doing an aggressive release will clear things up, and keep things cleared up.  He does not think she would need another release in the future.   
  3. We can do a heel cord release at the same time and hopefully get her left leg nice and stretched out again.  Because she does not have sensation in her feet, this additional surgery should not bother her, but will save her from needing to undergo surgery again in the future to release it. 
They said to expect a call to schedule the MRI and appointment within a week.  I will keep everyone updated on when our next appointment will be.  Please continue to pray for wisdom and guidance for David and I, as well as Dr. Moss.  Thank you for keeping our sweet girl in your prayers!

 

2 comments:

Anonymous said...

Your husband looks remarkably like my daughter's soccer coach. Was your husband adopted? (the coach was, which is why I'm asking)

Your story is so sweet though, and I imagine it must be such a blessing for both your girls to have someone to go through all the icky stuff with.

Jamie said...

No, he wasn't adopted, though I was :)