Monday, June 20, 2011

The changes we can see in Hannah post SDR

I know there are some other parents reading this blog who are contemplating or about to have their child undertake this surgery, so I wanted to document some of the changes we are seeing in Hannah and some thoughts on the procedure, where we had it done, etc.

We struggled with whether or not to have SDR done at the place/with the surgeon that pioneered the minimally invasive procedure and has had such great results.  This is at Children's in St. Louis, where kids typically stay for 5 days and then go home to intensive PT.  We decided that if we could find a surgeon with a lot of experience and success with SDR, who chose candidates judicially and cut a good percentage of nerve rootlets but not so much that kids were rendered incapacitated for a very long time, we would look at other places.  We also decided some amount of inpatient PT made the most sense for us if we could swing it logistically, as we know that the surgery itself is meaningless if you don't put in the time in rehab after, and that with 3 small kids at home and living in rural VT, our intensive rehab options are a bit more limited.

Lucky for us, Dr. Richard Anderson at Children's Hospital of NY fit that bill.  He is a very well-known pediatric neurosurgeon who directs their Spasticity Center and has a great SDR track record.  We have family and friends in the NY metro area and near to the inpatient rehab place so it worked for us logistically about as well as it can work, to move your family of 5 for this kind of thing.

So we are very happy and feel like the amount of nerves he cut (around 60%) was just perfect for our girl, because here is what we are seeing now:

-Two days post op, the PT/OT team at Dr. Anderson's Spasticity Clinic measured Hannah's tone using the Ashworth scale and on all measures, her tone was normal.  NORMAL.  To move her legs around is like moving Isabelle's legs around.  They feel loose and like butter.  It's amazing.
-Now that Hannah's up and about, we also notice her arms are much looser, something many people report even though the surgery is only to the nerves affecting the lower limbs.
-Her voice is stronger and louder.  Before surgery, she was often hard to hear and spoke with a very soft voice.  Now she speaks loud and clear almost all the time in a big strong voice.
-Her bladder and bowel control is totally fine.  I was worried she would have a hard time with that initially but this has not been an issue at all.
-She is a social butterfly.  Before surgery, she was a little more reserved and quiet, and prone to getting very distracted.  I'm not sure what this is about, but I wonder if she was putting so much energy into getting her body do what she wanted it to do, that now that she doesn't have to struggle as much, she can focus more on what's going on around her and engage with her environment more.  This is such a great and unexpected gift, especially as she is getting ready for kindergarten.

So, we'll watch as Hannah's strength continues to come back and see where she goes with it now that excessive the tone has been removed.  But just one week out, I am already totally sure this was the right thing to do for our girl.


Wojtkowiak said...

Your posts just make me happier and happier for all of you!! Hope to visit soon after we get back from our vacation. Love you all!!

jill Kopel said...

so glad to hear that hannah is doing so well in this process. such good news. i cant wait to hear her new LOUD VOICE when you all get back!
we are thinking of you guys
jill, ski, ruby, and ada

Jacolyn said...

Krista, I know this will sound weird but I'm envying the opportunity to have therapy will in-patient. It is only day 1 of being home and I'm exhausted trying to get Grace's therapy in, take care of my other (I feel) neglected kids and all the other "stuff".