We FINALLY got the radiology report from the scan center yesterday. I had wanted to see what the radiologist had said, but knowing that a lot of the times, radiologist miss some important things on scans. I sent the images to several people to take a look and also to I submitted Stryder’s MRI images to The Chiari Institute for review and will wait to hear their opinion. I did this for several reasons. One, I wanted to make sure that we don’t miss anything when we go see the neurosurgeon and second, to make sure that I should be worrying right now. Every single person that has seen the images has said the same things, so I guess it’s time to move forward and accept that brain surgery is inevitable. (Just submitted to TCI today, and they review images two times per month).
So now for the next steps…
Stryder has an appointment at Shriners next week and then a neurology appointment on the 17th. I am saddened that scans were not done sooner. I can’t change that and have to look forward but I can’t help thinking that if maybe we had known sooner, some of the surgery would be avoided. What it comes down to is that Stryder’s collagen just plain sucks and is affecting all of his body parts, why wouldn’t it affect his brain too?
The report stated everything I wrote about before including the diagnosis of Arnold-Chiari type 1 malformation (pronounced key-are-ee) and the part that is most damaging is the clivo axial angle which is kinking his brain stem and that’s the part that can kill him as part of one of the bones is impaling his brain stem. From my understanding, this is caused because his connective tissue is so bad, but I’m not sure exactly. This particular problem doesn’t produce symptoms and usually the first symptom is death, so we are grateful to know it is there before. For those that want to know more about this surgery you can watch a video here.
On the report, it also noted mild levoscoliosis (scoliosis going to the left), diffuse posterior disc bulge at C3-4, and also severe chronic pansinusitis, which essentially his sinuses are packed full. He was diagnosed with chronic rhinitus at the Mayo clinic so that part isn’t that surprising.
We also got the New patient forms for his appointment July 8 in Michigan.
So now is the time to ask for help – we need to get to Michigan and it will cost a lot of money for flight, car, food, surgery, everything. We have a friend that set up a GoFund site, so please donate even $1 if you or share it so others can help. I will also be selling T-shirts and we have bracelets, too. I hate having to ask because people have given so much already, but my little boy needs brain surgery and we can’t do it alone. If you have suggestions, please feel free to contact me or email.