While I was in the process of getting diagnosed like I’ve mentioned in previous posts I had to get MRI’s, blood work, and EEG’s done. After we received the results for the MRI the doctor noticed I had a cyst on my brain. He stated that it looks like an innocent cyst that I might have just been born with and that unless it grows in 6 months when I was scheduled for my next MRI it wasn’t a tumor. Well, not only was it bad enough that I was going to be diagnosed with something life changing now I might have a tumor?!
The next step was to get an EEG and figure out what was causing all of these problems. The doctor said that since I had already had an EEG at our local hospital he wanted to step it up a notch and do a monitored EEG not just the hour long one. It was an EEG that monitors you for 48 hours inside of a hospital and on top of staying at an uncomfortable hospital, I couldn’t sleep. The reason why I couldn’t sleep is because they wanted to force my body to go into a seizure and see what the spikes were like on the recordings after that.
I was admitted into a hospital into the neurological wing where all they do there is testing on people like me. I was actually the oldest. The rest were younger and some were little children. I saw that and almost cried because at least I was able to live my life freely up until 17 years and they wouldn’t have that chance. That’s when it hit me that my condition whatever it may be isn’t just a game, it’s something that WILL change my life.
I was hooked up to the EEG and it was one that I’ve never seen before. It was this huge machine that is hooked up to all of the wires and if you got up to walk around you had to push it around almost like an IV when you go to the hospital or what you see in the movies. It was so completely obnoxious and annoying. Although the good thing was since the wires that were hooked up to my head were so long if I had to go to the bathroom in my room I didn’t have to drag that around with me. It’s actually kind of funny because when my friends came to visit me they were looking for me while I was in the bathroom and they found me because all of the wires were hanging out of the door.
While I was in the hospital my dad had taken those days off of work because whenever I go to the hospital he is ALWAYS there, even when I was hospitalized with pneumonia and an asthma attack when I was 8. He stayed up the whole time except for when my mom came for the day he would nap in the chair, the nurses actually gave us extra blankets for him. We watched movies the whole time, my mom bought me literally every favorite food or candy I liked to keep my spirits up. I still regret up to this day not going to the other patients on that floor and talking to them. They must have been so scared to be that little and be going through something like this, it is so unfair for children to go through this. They are too young to understand what exactly is happening. How do you explain to a child that they can never do something again because of their condition?
Well the doctors tried to trigger a seizure by keeping me awake and by doing the strobe light test and absolutely nothing worked. I thought maybe it was a miracle, maybe I only had those two seizures and that was it, I’m not epileptic.
Once we got home from the hospital my parents were being cautious and were trying to help me get into bed safely. Good that my mom ended up staying because as soon as she was about to get me another blanket I started to seizure, only this time I tried to control it so I wouldn’t have one. From my experience I feel like this is the worst thing I could’ve done. I remember my mom screaming for my dad and then she tried to hold me but I felt my whole body tense up and it was so painful but I was trying to not have it and then I don’t remember anything after that.
My parents called the hospital and told them what had happened, they said it’s not uncommon they have had plenty of phone calls like this. They said that they will get my results as soon as they can to the doctor.
The doctor called us once the results were ready and he said that there were spikes in my EEG even though I didn’t have a seizure. Pretty much my brain is abnormal and is constantly spiking. That’s when he gave me the diagnosis.
Once we went to the other doctor in NY he looked over all of my results. He went back to the MRI and said that I didn’t have a cyst. It looks like it is part of my brain tissue hooked onto my skull. He told me that most likely what happened was when I was born the doctors squeezed my unformed head a little too hard (my mom had terrible complications with my premature self during labor) and that’s what that was. He said it’s nothing to worry about but that I should get MRI’s at least annually to make sure nothing has changed with it. He went over my EEG’s and said the same thing, that I was having spikes even without the seizure and it was occurring in my frontal lobe. He confirmed the diagnosis and then he proceeded with what causes it, what I should stay away from, and what I can do.
I can’t:
· Go on roller coasters
· Drink
· Be sleep deprived
· Be stressed out to the max
· Skip my medication
· Take baths
· Be unsupervised
· Do kickboxing anymore, until the medicine shows it’s working
· Work around sharp objects until the medicine works
· Drive
That’s just the small list. Pretty much in the beginning I didn’t do anything except stay at home supervised all the time or if I went anywhere, my friends had to know my parents phone numbers and vice versa. Once the medicine actually showed that it worked and this was the medication for me I had a little more freedom. I could now be unsupervised for certain things, I could go back to kickboxing, and after some time I could drive. When I got my license back that was the one of the happiest moments of my life.
Has anyone else been monitored like this? What else can't other people do?
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