Lately there has been a lot of awareness for the awful disease of ALS with the ice bucket challenge taking the world by storm. However, I'm writing to tell you of another awful disease that has no cure and not many are aware of. I know more than I'd like to about this illness because I live with it every single day.
Arnold Chiari Malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine causing many symptoms. Chiari has wide range of diverse symptoms and affects everyone differently.
I was diagnosed with Chiari in October of 1999. I was having pain in my back and doctor's sent me in for an MRI. I got a call saying that the MRI results looked fine...a week later they called back. This time they informed me that the MRI had barely caught a malformation at the base of my brain and they already had me scheduled to see a neurosurgeon. After an extensive review of my medical history the neurosurgeon explained that I started having symptoms of Chiari when I was about twelve. However, so little is known about Arnold Chiari that is took them seven years to diagnose it...and then it was only on accident!
A month after discovering the Chiari I underwent brain surgery. The surgery is not a cure! It is only a way to help relieve some of the pressure on the brain and spinal column. Roughly six months after my surgery I began having spells of unconsciousness. During a typical "spell" I lose consciousness without any warning and I am out anywhere from 5 minutes to 2 hours. During this time I have severe pseudo seizures. I shake uncontrollably as though I were having a grand mal seizure...but my brain waves are always normal. I awake from these spells extremely sore and weak. It typically takes me 2-3 days to recover from it. I have been having these spells about once a week for the past 15 years.
I have seen doctors all over the country including at the Mayo Clinic in Minnesota and I still do not have an explanation for my spells or any ideas on how to treat them. We know that these spells are neurological and somehow related to my Chiari, however doctors still do not know enough about Chiari to know what is causing my spells or what to do about them.
Along with these spells I battle other symptoms of Chiari daily such as extreme fatigue, terrible headaches, extreme dry eye, pain in my neck, shoulders, and back, muscle weakness, constant tingling in my feet, constant ringing in my ears, hearing loss, etc. The list goes on and on.
I do the best I can to stay positive. I try to keep a smile on my face no matter how much I am hurting. I know a lot of people look at me and tell me that I don't look sick...that is my goal. However, underneath that smile I am suffering almost every second of every day. There is no cure for Chiari or it's symptoms. Most people don't even know what Arnold Chiari is...including the doctors, ER staff, and EMT's that work on me! There needs to be more research and awareness. I shouldn't have to go into the doctors office and explain to them what Chiari is! Living a life like mine it is very easy to give up hope, however, I am still holding on to some! I am holding on to hope that someday someone out there will find the answer. I have hope that someday someone will figure out what is causing my spells and think of a way to stop them. I have hope that someone out there will figure out a way to calm down Chiari symptoms without adding new ones due to medication side effects. Unfortunately these things won't happen if people don't even know what Chiari is!
On September 20th my family and I are participating in a walk to raise awareness and funds for Chiari research. My hope in doing so is that we can make enough people aware of this illness that maybe we'll reach the one who has the smarts and the initiative to take the funds we raise and find the answers so many of us Chiari sufferers are hoping for.
My goal in sending out this email was to make you aware of what Chiari really is and maybe you can pass that info on to someone else. However, if you do feel so inclined to support my family and I on this walk and also help me raise funds for Chiari research you may donate at https://www.conquerchiari.org/ccwaa14/TiffanyGoodson
I want to stress that I did not write you today to ask for money. Please don't feel any pressure to donate unless you'd like to. My main goal here is awareness!! Thank you for taking the time to read this.
Luvs & Hugs,
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