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What an Experience.
What an Experience Part II
Well for those who wanted to follow my story regarding my treatment for Sturge-Weber, here is the story of my third surgery which won’t be as long as the first part.
My wife and I were hoping to get a call from the doctors for a date on when we would proceed with the big operation. I receive the call on January 24th from my Neurosurgeon asking me if we could meet with him Thursday of the same week which I had to refuse since it was so short of a notice because of my wife’s work. So we agreed to meet on Monday the 30th for a last look at everything and that the operation would take place the next day. I was very happy to hear this since I figured I would get operated on the second or third week of February only.
Well that same day I had to go for a walk and really think for the first time what I was doing and I started asking myself questions that I hadn’t thought of before, I was asking myself if I had taken the right decision and how was I going to adapt to my new vision, was I going to be free of all the seizures I was having. As I was walking down the street I asked myself if I was going to be able to see the road the same way I was now, for you this might be a stupid question but when you’re told that you will lose your left side vision from both eyes you have to wonder. But I had told myself that I was going to go through with this with a positive attitude no matter what.
So we drove down to Montreal and met with the doctors and we were explained the procedure of the operation and at what time I had to be in the next morning.
I was prepped for the operation at 7:30 in the morning and I was on the operating table at 7:45 and within minutes you are put into a beautiful sleep. I was told by my wife that the whole process of the operation lasted a total of 9 hours.
When I finally woke up that evening and I opened my eyes for the first time I was shocked to realize that I could see from both eyes. I had imagined that I would see dark on the left side of both eyes which wasn’t the case. When one of the doctors came to check up on me I told him that I didn’t understand what was happening to me with my vision. He explained to me why and then he showed me the truth of what I hadn’t realized. He stood at the end of the bed and told me to look at him straight in the face without moving my eyes. He took hand and slowly moved it from my right side to my left side and he asked me to tell him when I wouldn’t see his hand anymore. That’s when It hit me and made me feel really weird inside of me, as soon as his hand had passed my right side vision and was about to go on the left side of my vision, I couldn’t see his hand no more. I was totally shocked, I had kind of hoped that I hadn’t lost my vision but he made me realize what it’s like to have your right occipital lobe taken out of your brain. Now that I’m back home I have to prepare myself for my therapy for my vision and that might be a story of its own.
We shall see.
The Sturge-Weber Syndrome Community, a branch of the Vascular Birthmarks Foundation, provides support and services freely and upon a volunteer basis for individuals and families living with SWS and vascular birthmarks, while sponsoring research and promoting physician education and awareness, as well as education of the public at large.
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