So I had brain surgery back in 2008. I have this thing called Chiari Malformation I. It is where my cerebral tonsils extend down into my spinal canal. It was what had been causing my headaches, migraines and other symptoms I've had since I was 4 years old. So a few months after my diagnosis, I had had surgery. They cut open the back of my head, removed part of my skull and top vertebrae and opened up my dura. A month later I had to have an additional surgery to fix a spinal fluid leak. For a while I felt a lot better. I still had bouts of bad headaches, but overall it improved my life. The surgeon who did my surgery pretty much told me I was cured and wouldn't need to see me again.
Here I am, 11 years later, meeting back with a different neurosurgeon. Apparently my cerebellum is herniated just as far again. They also said it looks to be fused with my brain stem, which is also herniating into my spinal canal. The doctor called this Chiari 1.5 They let me know I have a connective tissue disorder and the spinal flow to my head is completely blocked. The only option for relief is another brain surgery. I have all over body pain, pressure headaches, dizziness, I run into walls and trip over nothing, blurred vision, back pain, etc. I am terrified to have another surgery. Not only was recovery from that horrible and painful, I was off work for 2 months. I have an 18 month old, 4 other kids and a grandbaby to take care of. I can't possibly be off work, unable to lift my child for months.
So I just deal with it everyday. It is an illness that cannot be seen and nobody has ever heard of. Therefore I feel like nobody understands what I'm going through. Nobody knows how bad I hurt. Everyone just thinks I'm exaggerating. Half of the doctors I have seen don't even know what it is when I tell them. I wish there was more awareness about this condition. I wish there was more support for me. So if you are reading this, please check out some sites to learn more about this condition. Don't let those of us with invisible illnesses feel invisible.
https://www.conquerchiari.org/index.html
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Chiari-Malformation-Fact-Sheet
Here I am, 11 years later, meeting back with a different neurosurgeon. Apparently my cerebellum is herniated just as far again. They also said it looks to be fused with my brain stem, which is also herniating into my spinal canal. The doctor called this Chiari 1.5 They let me know I have a connective tissue disorder and the spinal flow to my head is completely blocked. The only option for relief is another brain surgery. I have all over body pain, pressure headaches, dizziness, I run into walls and trip over nothing, blurred vision, back pain, etc. I am terrified to have another surgery. Not only was recovery from that horrible and painful, I was off work for 2 months. I have an 18 month old, 4 other kids and a grandbaby to take care of. I can't possibly be off work, unable to lift my child for months.
So I just deal with it everyday. It is an illness that cannot be seen and nobody has ever heard of. Therefore I feel like nobody understands what I'm going through. Nobody knows how bad I hurt. Everyone just thinks I'm exaggerating. Half of the doctors I have seen don't even know what it is when I tell them. I wish there was more awareness about this condition. I wish there was more support for me. So if you are reading this, please check out some sites to learn more about this condition. Don't let those of us with invisible illnesses feel invisible.
https://www.conquerchiari.org/index.html
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Chiari-Malformation-Fact-Sheet
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