As Stryder’s brain surgery date comes closer , I find myself starting to worry more and more about it. I have often started thinking about what happens if there is a complication during surgery and then even if there are no problems, is he going to be different after? Will he not be as smart as he is now. I know that most of my worries are for not, but really, we just don’t know and it’s scary.
But with the worry, also comes excitement. I wonder if he will be happier- what will his demeanor be like because he will be in less pain? How much more will he be able to do after surgery? I know God has a plan and God is watching over my little boy- no matter what, I know that surgery is the ONLY option for life, especially after today’s phone consultation with Dr. Francomano today.
–She is Stryder’s Dr in Baltimore and an expert in Ehlers-Danlos Syndrome and other connective tissue disorders. (Stryder is still undiagnosed, but he does have a connective tissue disorder.) We saw her last in April and I was looking forward to the consult, but nervous at the same time.
I told her about sending Stryder’s imaging to The Chiari Institute and how Dr. Rekate wants to do the surgery on October 1. I asked her what her opinion was, not knowing exactly what she would say. Her first words were “You have no choice!” I knew this, but to hear it from a well respected Dr, one who knew Stryder was a big deal. She reassured me about Dr. Rekate, mentioning all of the neurological boards he is on and how he thinks outside the box and how wonderful he is and the top expert in the world for all of Stryder’s conditions. She said that Stryder’s Clivo Axial Angle was so severe that it too dangerous not to do surgery and she doesn’t think she has ever seen a lower number in her career-and yet he is only 6.
The next problem is Stryder’s local neurologist. I really respect him and he has helped Stryder with so many problems, number one being his epilepsy. I love this Dr, but during Stryder’s last appointment, he said that Chiari surgery is unnecessary in almost all cases. I did explain that it wasn’t the Chiari I was most worried about, but the kink in the brain stem, the cervical instability and he went on to explain that Chiari surgery is often not helpful, which I do understand and have read a lot about. Mind you, he didn’t look at the imaging, nor did he read the report, only based his opinion on his own opinions about Chiari. He asked if we would get a second opinion, even though I already researched and knew the numbers were bad and even though the number one Pediatric Neurosurgeon already said it was needed. Like I said, I do like and respect his neurologist so I was willing to do this for him. I have been trying to find another neurosurgeon that could provide this second opinion- a Dr that knows about connective tissue disorders, Chiari, Fusions, abnormal Clivo Axial Angles etc etc etc. I even wrote to Stryder’s Dr. at Shriners to see if they could recommend someone and I paid another hospital to have a second opinion where I was told Stryder was too complicated.
When I told Dr. F that Stryder’s neurologist wanted a second opinion, she flat out said “Do not get a second opinion. Don’t waste your time. Dr. Rekate is the top, the best, you don’t need a second opinion. I am your second opinion” All of a sudden a huge weight was lifted off my shoulders; she is writing a letter stating exactly why Stryder must have this surgery!
Dr. F reassured me, reminding me that we are on the right path and need to keep going down it. Yes, this is a hard surgery and yes, it’s very rare for a 6 year old to need a fusion, but we don’t have a choice. She also made the point that I keep reminding myself: why are we surprised that Stryder’s brain is kinking and bending when the rest of his body and joints are so profoundly hypermobile? She explained again that bracing is an absolute must with him, although not highly recommended all the time for most patients, because Stryder’s body isn’t doing what it should be, we are making him worse not bracing all the time. With that said, I ordered a new thumb brace for his hand and hope that it will fit. Another $100 spent with a blink of an eye…
I’m so glad we had the consultation, now I can move forward.
Surgery is scheduled in New York for October 1 at 7 AM. We have to be there two hours early and we have a Pre-op appointment and testing September 29. I plan on flying there on Saturday so we can have a day to see New York before surgery. Dr. Rekate’s nurse said to plan on being there at least 5-7 days after and then recovery will take months. Stryder will likely miss 8-10 weeks of school, although that keeps changing so we really don’t know.
I have been asked if Stryder would like cards to be sent, so here is the address for those that would like to mail him something:
626 NE Cougar Loop
Prineville, OR 97754
He loves getting mail 🙂
Now to loose ends:
Stryder’s birthday is on Thanksgiving this year. I realize that it’s a ways off, but with surgery and it being on the Holiday, I feel I need to start thinking about it. I would love ideas to make the day special for him.
Someone asked what his favorite foods were, so here they are from his words:
strawberries, strawberry cake, steak, macaroni and cheese, hot dogs, chicken nuggets, chicken, chicken wings, bananas, sandwiches. LOL I know he also loves BBQ chips.
I’ll keep everyone updated as I get new news….