Heath's Journey 12/10/10

mujul79's picture

I'm not sure how to start.

Ok so heres the news. We saw the NS today.

They took a fast hx and asked why the MRI was done and I told him about the x-ray. The Dr then pulled them right up on a computer for me to see.Heath has Chiari M1. It was eye opening to see his own scans. I have looked at many on the net but it is nothing like seeing the pictures of your own childs brain on a computer screan and having a Dr talk aobut how it is abnormal.

Facts: Chiari Malformation 1
Right side is 6mm
Left side is 2mm

Heath is in the normal age range for finding it out because he has symptoms. He was telling me children with no symptoms don't find out until teen years or older when it is because of other scans or headaches.

So whats next? We are going to get all his sleep study reports from Atlanta. We then talked about the risks of the surgery and the outcomes the Dr expects. It can help with Heaths balance, and tone but they are not imitate and will come with more PT, and if the sleep study reports show he has any nero central apnia it can fix that. So now we wait for the Atlanta reports.

I liked the Dr a lot. He was clear that while the surgery could help he won't just jump into it unless he sees the need on the sleep study reports. He was able to answer my questions about the recovery time and what exactly would be done in the surgery. He is talking about a decompression but Heath's ventricals are normal size so he did not think a shunt would be needed and the fluid around the brain stem was not being blocked, and his Scan also showed no sign of a bubble of CF in the spin. So that is all good news.

After we get the reports from Atlanta 2 things could happen.
1) If they show central apnia we will do the surgery and soon like Jan.
2) If they are not showing bad or no central apnia we will go back to the offic and talk about if the risks are worth the surgery and try to fix the devemental delays or get a repeat sleep study in Albany.

I called CHOA today and we got the ball rolling for sending all the reports and scans to the right place.

So how do I feel? Scared....... I just don't know what to feel, kind of in shock but since nothing can be fixed this weekend or even before x-mas I plan on just enjoying him and taking it like we have been one day at a time. I just want him to be happy and to do the right thing. I am happy that we have answers it has been a long 24 months of not knowing. Now it is the matter of if it can get fixed or worth the risk or not.