Aaleayha
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您好！我叫克莉斯婷。( Nín hǎo! Wǒ jiào Kè lì sī tíng .)
For those of you who aren't fluent in Chinese....
Hello! My name is Christine.
I'm 23 years old and I've been having seizures for almost 3 years now. They first started when I got punched in the head. Some how that shifted the bones in my neck, and the bone growths that were unknown at the time, right into my spinal cord and possibly my brain stem.
We went through everything you could think of. They started me on an IV of Dilantin, when I was brought into the hospital for the second time, without asking of my allergies or checking up on me. I went into anaphylactic shock and almost died that night.
When all this first started, my family didn't believe me and thought me to be looking for attention. That changed after a year, when my mother walked in on one of my events. She has been my biggest supporter and defender since. She pays for my medicine and tests.
All the neurologists I went to gave up on my case, shoving me into the category of Psychogenic Non-Epileptic Events and handing me over to therapists. But I knew it wasn't psychogenic. I have been seeing a counselor for 17 years and counting, not once have I had any kind of serious mental problems. After my seizures started to increase, and cluster together, we took it into our own hands to figure out what the problem was.
After two years, we had pin-pointed the source of the problem. It was in my C1-C5 section of my spine. Every time we did a limited range of motion test, I would fail and go straight into one. Eventually, we gave up telling the doctors what we assumed... because they wouldn't believe us. They told us that they had no scientific evidence to back up our case. My MD did though, and he prescribed Lyrica to help. It's been a god-send. It slowed the progress of having 12 seizures a day to maybe once a month.
Sadly, about half a month ago while I was working at my desk, I started losing function in my left hand and it spread rapidly to my left leg. By that time, I had gotten my mother and we headed , again, straight for the hospital. By the time we were actually seen by an on call doctor, it had spread to my owl body. I was twisted into odd angles and I couldn't walk. they ordered everything under the sun first before we told them to do an MRI of my neck.
The next day my MD ordered the MRI and then let me go from the hospital. We waited three agonizing days until the appointment with him. He told us that they had found two bone growths, or spurs, pressing up into my spinal cord on the C3 vertebrae. We were happy and sad at the same time. WE had an answer! but .... it wasn't the greatest news.
They are still growing and I could possibly start growing more. We think it's due to the genetic degenerative disc disease. My grandmother has bone spurs all down her back and they cause her nerve problems to no end. My Mother broke her back in the lower lumbar region.
Unfortunately, we got the bad news. The doctors want to wait 3-4 more YEARS before they take any sort of action against it. I know they are waiting for us to get the money. With insurance, which we don't have, the surgery alone would cost ...3,400 dollars. No one will help us. I was denied by disability and medicaid.
I also am now suffering from the affects of the spinal pressure, in the form of nerve damage (pain, numbness, limited mobility) in both sides of my body now. The Lyrica is causing bad side affects that is messing with my speech and my ability to perform tasks.
My family is suffering and I can't do anything to help. To get my mind off this desperate and seemingly hopeless case, I'm learning to speak and write Chinese. I also do original and pixel art.
That's my story... and there is still more coming up in the future.
~Aalea
For those of you who aren't fluent in Chinese....
Hello! My name is Christine.
I'm 23 years old and I've been having seizures for almost 3 years now. They first started when I got punched in the head. Some how that shifted the bones in my neck, and the bone growths that were unknown at the time, right into my spinal cord and possibly my brain stem.
We went through everything you could think of. They started me on an IV of Dilantin, when I was brought into the hospital for the second time, without asking of my allergies or checking up on me. I went into anaphylactic shock and almost died that night.
When all this first started, my family didn't believe me and thought me to be looking for attention. That changed after a year, when my mother walked in on one of my events. She has been my biggest supporter and defender since. She pays for my medicine and tests.
All the neurologists I went to gave up on my case, shoving me into the category of Psychogenic Non-Epileptic Events and handing me over to therapists. But I knew it wasn't psychogenic. I have been seeing a counselor for 17 years and counting, not once have I had any kind of serious mental problems. After my seizures started to increase, and cluster together, we took it into our own hands to figure out what the problem was.
After two years, we had pin-pointed the source of the problem. It was in my C1-C5 section of my spine. Every time we did a limited range of motion test, I would fail and go straight into one. Eventually, we gave up telling the doctors what we assumed... because they wouldn't believe us. They told us that they had no scientific evidence to back up our case. My MD did though, and he prescribed Lyrica to help. It's been a god-send. It slowed the progress of having 12 seizures a day to maybe once a month.
Sadly, about half a month ago while I was working at my desk, I started losing function in my left hand and it spread rapidly to my left leg. By that time, I had gotten my mother and we headed , again, straight for the hospital. By the time we were actually seen by an on call doctor, it had spread to my owl body. I was twisted into odd angles and I couldn't walk. they ordered everything under the sun first before we told them to do an MRI of my neck.
The next day my MD ordered the MRI and then let me go from the hospital. We waited three agonizing days until the appointment with him. He told us that they had found two bone growths, or spurs, pressing up into my spinal cord on the C3 vertebrae. We were happy and sad at the same time. WE had an answer! but .... it wasn't the greatest news.
They are still growing and I could possibly start growing more. We think it's due to the genetic degenerative disc disease. My grandmother has bone spurs all down her back and they cause her nerve problems to no end. My Mother broke her back in the lower lumbar region.
Unfortunately, we got the bad news. The doctors want to wait 3-4 more YEARS before they take any sort of action against it. I know they are waiting for us to get the money. With insurance, which we don't have, the surgery alone would cost ...3,400 dollars. No one will help us. I was denied by disability and medicaid.
I also am now suffering from the affects of the spinal pressure, in the form of nerve damage (pain, numbness, limited mobility) in both sides of my body now. The Lyrica is causing bad side affects that is messing with my speech and my ability to perform tasks.
My family is suffering and I can't do anything to help. To get my mind off this desperate and seemingly hopeless case, I'm learning to speak and write Chinese. I also do original and pixel art.
That's my story... and there is still more coming up in the future.
~Aalea
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