Yesterday the phone rang and I saw it was Stanford calling. I literally took in a deep breathe and said to myself...here we go. It's been a long and emotional 15 months for me.
So moyamoya is a progressive disease meaning it gets worse until you stop it in it's tracks to help slow down the progression. If it is surgical intervened adults can go on to live a full life. Right now I feel like I have been lied to and pushed around. I can't count how many times I have laid out my symptoms to my dr in Boston. Imaging after imaging and was told everything looks great and to give it time.... Keep doing what I'm doing. Yes I'm alive, but feeling tired all the time, constant headaches and numbness have been very draining. Where is the quality of life there and where is the fight from the doctor in Boston to help me?
Side note: It warms my heart that my daughter told me yesterday that she wants to be a neurosurgeon when she is older and go to medical school at Stanford. She wants to operate on moyamoya patients. I know she will do it!
Sorry for the rant, but I feel in a sense I have been saved. I feel like i am being given a second chance. I was told that the surgeon in California has only had 40 cases like mine and all have been pretty successful. I was also told a very important scalp artery was spared in my last surgery which is a great thing!!
I am writing this because never settle for what one doctor tells you. If you have the gut feeling that you know he/she is not correct...go get that second opinion...go get that third opinion. No one is going to fight for your life, but yourself! I've known for the past 15 months that my surgery did not work, but in the medical field education trumps intuition. My intuition got me my diagnosis...my intuition made me get that second opinion.
To hear that I am getting little to no flow from California and being told I was getting a good enough amount from Boston is a little alarming. That's a huge difference in diagnosis!
It's hard not to worry about the financial and emotional strain this will have on my family, but my life is worth it. I need to be around to see Kadyn graduate from medical school and Watch Colton become an adult redifining all odds!
I got this! We got this! I am extremely blessed and thankful today!!! Thank you God!