Hey all,
My name is Taylor, and I am 18 years old.
A brief history about me:
When I was 11 years old, I was diagnosed with Type 1 Diabetes, and a day away from dying.
2 years later, I had an MRI. I was having constant, very very painful head aches, dizzyness, ringing in my ears, light headed, ect. So when I went to my pediatrician, he suggested an MRI. I got the MRI done on a wednesday, and friday, of that week, my results came back. My pediatican said I had Chiari Malformation type 1, and that I needed to see a Neurosugeon right away. let me back track a little bit... before getting my MRI, my pediatrician though I had a brain tumor, because of the extent of my headaches, and other symptoms, but also because of my behavior, like aggression, depression, ect. Before the head aches and what not, I was healthy, besides the diabetes, an active playing basketball, lacrosse, and softball.
It was like these symptoms hit me out of nowhere!
No one in my family has type 1 diabetes, or Chiari's, and they've been checked.
Back to my story,
So after we got the news from my pediatrician, he refferred me to Cincinnati Chilren's Hospital Medical Center. There I saw the neuosurgeon, who specializes in Chiari's. When he met with me and my family, he showed us my MRI results. He said it was the worst case he has seen in a pre-teen, and that he was surprised I was screaming in agony everyday. He said that my MRI results, are what he sees in older, middle aged adults. He said I had absolutly no other option. but to have decompression brain surgery. My Chiari's was between 15mm, and was starting to push up against my Brain Stem.
So on February 12, 2008, I had decompression brain surgery at 13 years old. My neurosuregon, Dr. Kerri Chron, told my family, that it was worse than he thought going into the surgery. They did an MRI halfway through my surgery, and ended up putting a dura plasty.
I was in the ICU for a while, until eventually I was moved into a regular room.
The reason I am asking, and joined this website, was because I wanted to know if anybody out there has had any problems since having the decompression brain surgery.
I am now 18, and it's been 4 years since my surgery, and I personally feel it was the worst mistake of my life.
I have headaches every single day, an I don't say that lightley.
The pressure in my head is so exxcruciating, i feel like my head is going to explode, or that brain matter is going to start oozing out of my ears.
My vision is horrible, especially when my headaches are so bad. My eyes do this twitch thing, where they move back and forth so fast. And I get double, blurry an spotted vision.
I get lightheaded everyday, and dizzy. Even getting out of bed, or off the couch do I get dizzy and see stars.
The ringing in my ears, are off and on.
The stiffness in my neck is back along with muscle spasms, aches, and pain.
I feel just as, if not , worse than before I had my surgery. I am on no pain medication. My neurosurgeon said that after my surgery, I would be as good as new, and get back to my daily life.
Well, was he FAR from being right..
I am no longer playing any sports. and i had been since I was in 1st grade.
I developed PTSD, and am currently seeing a psychologist and psychiatrist from the traumas of my surgery, diabetes, and other traumas that happened after.
I was also diagnosed with Celiac Disease, 2 thyrioid nodules, that I am currently being tested, and treated for to see if they are cancerous. I was diagnosed with An aberrant right subclavian artery. I was diagnosed with Tachycardia, and put on Beta-blockers, Topral XL- 25 mg to be exact.
I get yearly MRI, that are sent "supposivly" to my neurosurgeon at Children's Hospital.
Every year I get my MRI results back, they say "no trace of chiari's, BUT deffinite changes from my decompression surgery" and no one will tell me exactly what that means. They don't tell me anything at all.
I have not seen any neurologists. Talking to my psychiatrist, she did say that because of my surgery, I am prone to having seizures, but have not been tested for them.
I am at a loss.
I don't know where to go from here or what to do. All I know is I CAN NOT take this pain anymore. It was traumatizing enough at 13 years old, but now 18, it's enough. My memory is completly and utterly bad. My mind is too. I feel like I'm losing it all together.
I talked with my parents about seeing a neurologist as a next step, so we're looking into that.
Has anyone had these problems since having decompression surgery?
Does anyone know of Chiari's coming back? I think my neurosurgeon was full of it.