He was our Doctor who was taking it to a case study.
He brought up a third option. Of Course! They talked about doing a posterior decompression, but they also thought you would need to stabilize the spine, by doing a spinal fusion also. Then if more problems develop in the future we would have to go in and do the trans oral. I asked him about how many trans orals he does a year and he said none!
I also talked to him about trying the growth hormone as an approach, and he thought that was reasonable.
The good news is for now we won't worry about what surgery to do.
We will hopefully see improvement from the growth hormone and may be if we see enough. We may be able to avoid surgery all together. I realized it's a long shot. But one can HOPE!
Kerry, it's been so long and I somehow came across this blog. I am so sorry that sweet Emma has to go through all this uncertainty.
ReplyDeleteI have 2 family members (my sis in law and my cousin) who have this. One is chiari 2 and does not require surgery. Her symptoms come and go and vary with severity. The other is a very bad chiari 1 case (brain has grown clear down her spine) and she has had multiple invasive surgeries. She spent a lot of time trying to get into the clinic in New York City, but insurance wouldn't allow it.
There are very few things worse than having to deal with health insurance companies. I am just so sorry that you have to deal with that on top of being worried about Emma.
Please know that I am thinking of you guys and will be praying that the growth hormone will be helpful.
We are praying for you guys.
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