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Hello, My Introduction and Story

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Old 06-25-2004, 01:04 PM   #1
Join Date: Jun 2004
Location: Long Island
Posts: 1
Daimajin HB User
Hello, My Introduction and Story

Hi everyone, I've been reading through the threads here and I've decided to register and introduce myself so that I can interact with everyone.

My name is Roy, and I'm a college student here on Long Island, NY. I was born with fibrous dysplasia (Pagets disease?) which resulted in some generative bone patches on my skull. When I was thirteen years old, a patch of this degenerative bone on my right temple began to grow and expand, and consequently I had cranio-facial surgery to have it removed. Everything went fine up until after I was released from the hosptial. I have a post-operative infection, and was rushed to the hospital for an emergency procedure to remove the titanium and other materials applied to reconstruct the area where bone was removed.

I slowly recovered, and everything was fine until two years ago when another patch of bone began to grow and expand. This patch was located on the right side as well, but further back on my skull, about 3 or 4 inches above my right ear. Again, I had cranio-facial surgery, and the "tumor" was successfully removed. When I awoke, I noticed that my left arm, from the elbow down, seemed bigger, puffed out and engorged with blood. I also had a lot of trouble using it (It would take multiple attempts for me to grab a glass of water, or something similar, it was very uncoordinated). The doctors hadn't said anything about it, and since I was in a very diminished capacity (lots of pain meds), I didn't have the presence of mind to bring it to their attention. Soon enough, I had two seizures, I don't remember how many days after the actual operation they occurred. The first one I remember all too well. My left arm began to "jump" up and down, and then suddenly my whole body started to shake and convulse, and then I lost consciousness. I woke up the next morning thinking it was a dream, but the nurses explained to me that it was a grand-mal seizure. I had another one the next day, but it was cut short by a dose of Atavan (i think this was the drug) that the nurses quickly administered to me. I was able to tell them a seizure was coming because I felt it in my left arm. It felt like electricity. Subsequent EEG tests showed that there was nothing abnormal, though. However, MRI's revealed a lesion on the surface of my brain where the tumor was. Supposedly, the "tumor" had grown to the point where it was resting against the surface of my brain, and the removal of the "tumor" left the lesion.

So anyway, they put me on dilantin, and eventually I was at a therapeutic level, and they released me. Today, I take 800 mg of generic phenytoin daily, 400 mg in the morning and another 400 mg in the evening. I haven't had a seizure since the operation, which will be 2 years this July. As for the side effects of phenytoin, I've noticed that my cognitive capacities have lessened a bit. It causes a strain on both long and short term memory.

I'm not sure if having only two seizures counts as epilepsy, but I figured this would be the best place to read about my condition and post my story.

For those of you who have epilepsy, and you who support those who have epilepsy, I tip my hat to you and commend you. It's not an easy thing to deal with, and I wish all of you the best of luck, and most importantly, bravery.

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Old 06-26-2004, 07:39 PM   #2
Junior Member
Join Date: Jun 2004
Posts: 16
Sonja7890 HB User
Re: Hello, My Introduction and Story

Hi Roy!

Welcome. Thank you for sharing your story. I'm new too. I'm sure you'll find comfort and encouragement here!

Last edited by Sonja7890; 06-26-2004 at 08:00 PM.

Old 06-28-2004, 05:53 AM   #3
Join Date: Jul 2003
Location: Minneapolis, MN, USA
Posts: 390
Art_930 HB User
Re: Hello, My Introduction and Story

Good to know you, Roy - thank you for sharing your experiences. We are all here to share information and provide support for each other. Welcome!

Old 06-28-2004, 09:12 AM   #4
Join Date: Apr 2003
Location: St Petersburg, FL US
Posts: 445
LisaG890 HB User
Re: Hello, My Introduction and Story

Hi Roy,

Welcome to the board. Pull up a chair - Thank you for sharing your story. Looking forward to knowing you better!

Lisa and kids

Old 06-29-2004, 04:40 AM   #5
Senior Member
Join Date: Oct 2003
Location: erie pa
Posts: 226
gagcas HB User
Re: Hello, My Introduction and Story

hi roy,

good luck and welcome to our happy little family. hopefully you will find that this board will be a big help and make a lot of new unknown friends. good luck and talk at you soon.

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Old 06-30-2004, 06:04 PM   #6
Junior Member
Join Date: Oct 2003
Location: USA
Posts: 49
yolo HB User
Re: Hello, My Introduction and Story

Welcome Roy,

I had to reply you! I want to welcome you to the board.

You are sure to find some good information I did...


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