Topher's Surgery for Seizures
Donation protected
On December 2, 2016 I had my first "big" seizure - in my AP English class (turns out I had been having pre-seizures for years). I don't remember much about what happened, just that all of a sudden the teacher was speaking jibberish and then I couldn't hear anything at all and I could feel myself falling. The next thing I remember the paramedic was getting an IV started and I was in the ambulance. I always remember the parts that involve needles (yuck)! The rest of the day is a blur to me still, getting to the hospital, my mom arriving (she'd been in Portland), and finally getting to go home.
Fast forward to this December. It has been a long long long year. I can't tell you how many seizures I've had. Too many to count. I'm grateful that I am finally on medication that has reduced to amount greatly over the past few months. It was a rough ending to high school, playing baseball, and trying to start college. I just wanted answers to what was happening to me.
You see all of this comes from something that I had a long time ago, a cholesteatoma. What the heck is that you ask? Well it is an abnormal, noncancerous skin growth that can develop in the middle section of your ear, behind the eardrum (thank you internet). I had one of these bad boys that was misdiagnosed when I was younger - it caused all sorts of trouble. It's behind the reason the right side of my face is paralyzed, and why I am completely deaf in my right ear. It also grew to the point that it ate away and thinned out the bone on the lower right side of my skull. When that happened the bacteria from my inner ear got into the lining of my brain and I gave myself meningitis! It's a long story and my mom has the quick version which she can say and most of the time not get too emotional till later. I spent a lot of time at Dorenbecher Children's Hospital that year in the ICU and regular rooms, not a fun way to spend the spring and summer.
The reason I'm asking for your support is that over the last year I have spent days and weeks at Dorenbecher's again. This time trying to figure out why I all of a sudden was having seizures. After all the testing we think we know that because of scar tissue that has developed over time from the original tumor removal. This tissue is causing disconnects in my brain and basically screwing everything up. It really is the worst, and makes me feel awful all the time. It's like a flickering light - only I can't fix it. This part of the brain is responsible for "filing" so I can't remember short term, or pull things from long term either. Facial recognition is also hard, like I think I know you, but your face isn't ringing the right bells or I can't figure out your name. It's pretty embarrassing to run into someone you've known basically your whole life, an old teacher, 4-H leader and not know who they are.
Thankfully, I have some fantastic doctor's who think that they can remove the tissue and my brain will recover. The only problem is that they recovery process is pretty long for this surgery with lots of rehab. Even the best case I have a 3 to 6 month recovery time after surgery where working or going to school isn't going to be an option. That's why I am asking for your help. I have pretty good health insurance and my mom works really hard to help me and has been paying all of the medical bill the last year, but I know she is worried that she won't be able to juggle who gets paid first much longer. I need her help, because I also am unable to drive to Portland until it is documented that the seizures are gone or controlled for a long time. I also need her help just remembering what the doctor said the first time, and to remind the countless other times I ask later. I know she has used up all of her sick leave, and at some point won't have vacation left. She said she would just take leave without pay and when I asked how that would work she told me not to worry and she'd figure it out.
We both hate asking for help, if you know either of us very well you know that. With that being said, I am asking for your help to help me and my mom get through this very challenging time. Anything raised will go to my medical and rehabilitation costs. Thank you for taking the time to read this, and I appreciate your consideration.
Fast forward to this December. It has been a long long long year. I can't tell you how many seizures I've had. Too many to count. I'm grateful that I am finally on medication that has reduced to amount greatly over the past few months. It was a rough ending to high school, playing baseball, and trying to start college. I just wanted answers to what was happening to me.
You see all of this comes from something that I had a long time ago, a cholesteatoma. What the heck is that you ask? Well it is an abnormal, noncancerous skin growth that can develop in the middle section of your ear, behind the eardrum (thank you internet). I had one of these bad boys that was misdiagnosed when I was younger - it caused all sorts of trouble. It's behind the reason the right side of my face is paralyzed, and why I am completely deaf in my right ear. It also grew to the point that it ate away and thinned out the bone on the lower right side of my skull. When that happened the bacteria from my inner ear got into the lining of my brain and I gave myself meningitis! It's a long story and my mom has the quick version which she can say and most of the time not get too emotional till later. I spent a lot of time at Dorenbecher Children's Hospital that year in the ICU and regular rooms, not a fun way to spend the spring and summer.
The reason I'm asking for your support is that over the last year I have spent days and weeks at Dorenbecher's again. This time trying to figure out why I all of a sudden was having seizures. After all the testing we think we know that because of scar tissue that has developed over time from the original tumor removal. This tissue is causing disconnects in my brain and basically screwing everything up. It really is the worst, and makes me feel awful all the time. It's like a flickering light - only I can't fix it. This part of the brain is responsible for "filing" so I can't remember short term, or pull things from long term either. Facial recognition is also hard, like I think I know you, but your face isn't ringing the right bells or I can't figure out your name. It's pretty embarrassing to run into someone you've known basically your whole life, an old teacher, 4-H leader and not know who they are.
Thankfully, I have some fantastic doctor's who think that they can remove the tissue and my brain will recover. The only problem is that they recovery process is pretty long for this surgery with lots of rehab. Even the best case I have a 3 to 6 month recovery time after surgery where working or going to school isn't going to be an option. That's why I am asking for your help. I have pretty good health insurance and my mom works really hard to help me and has been paying all of the medical bill the last year, but I know she is worried that she won't be able to juggle who gets paid first much longer. I need her help, because I also am unable to drive to Portland until it is documented that the seizures are gone or controlled for a long time. I also need her help just remembering what the doctor said the first time, and to remind the countless other times I ask later. I know she has used up all of her sick leave, and at some point won't have vacation left. She said she would just take leave without pay and when I asked how that would work she told me not to worry and she'd figure it out.
We both hate asking for help, if you know either of us very well you know that. With that being said, I am asking for your help to help me and my mom get through this very challenging time. Anything raised will go to my medical and rehabilitation costs. Thank you for taking the time to read this, and I appreciate your consideration.
Organizer
Chrissy Lucas
Organizer
Corvallis, OR
