Tom's Journal

What an Experience.

This experience is coming from a regular person - like you, or your wife or husband, or another member of your family.

If you have someone in your family, or yourself, who lives with the syndrome called "Sturge-Weber", this is something you might want to read and try to put yourself in my place.

When I see a child or an adult having seizures, I know how they feel when they get them compared to you or others that don't live in their bodies. I know, because I personally have "Sturge-Weber".

During the 4 years since I've been diagnosed with this syndrome (I'm 38 years old) I have been on medications and hoping that they will help to stop these seizures that I've been getting.

Most of my seizures are the same, but twice now I've had a seizure where it seems that I totally loose consciousness. This I know from my wife who was with me during my first seizure, and from the nurses in the hospital with my last seizure.

I have decided, along with my wife after numerous meetings with doctors and specialists, that the medications can only do so much and that my next step would have to be an operation to remove the part of the brain that is causing all of these seizures. We made this final decision on October 31st of this year when I met with one of the top Canadian neurosurgeons in the world and his team. They showed me through my "MRI" that was taken in June of 2004, the exact spot where they could see something abnormal, but would need to do more testing. The testing meant that I had to get operated on to have depth electrodes planted in my brain, but first they wanted to have a new "MRI" done.

On November 21, 2005, I was admitted to the Montreal Neurological Hospital for a new "MRI", and on the 22nd the operation to implant depth electrodes in my brain was performed. I would have to keep the electrodes in for at least two weeks, until they could provoke a seizure by slowly removing me off of my medication.

On Tuesday, December 6, I started to have some seizures that started at 4:00pm and lasted through December 7. I even remember having hallucinations from these seizures and some of them were very scary.

After this testing, I had to go back for the operation of removing the depth electrodes.... I can tell you that after that operation, when I woke up it is was painful. Apart from migraines I have to say that this is the second worse headache that I have had to go through.

I will be back in Montreal in February for the big operation, once the doctors get all the needed information. I can tell all of you around the world - that if I have to be a guinea pig for the rest of the people who have SWS, then I'm willing to do it. Hopefully, the doctors will be able to make the lives of our future children and adults a better one to live in.

If you are interested in the continuation of this story after the operation, please just contact me and let me know. It will be my pleasure to let you all know how the operation went, and how I feel after being operated on.

Hopefully, after reading this, many of you will be able to understand a little more of what people with SWS are going through.

Tom Gilbert
SWSCC

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.