Debra's Chiari Story
Debra's Story Living with I changed schools at the age of 11 . Made new friends. At this time some of my symptoms went away. Well the depression went away. When I was a teenager I used to get horrible headaches. The pain was so bad I can remember going to the hospital a lot as a teenager for headaches. Blepharospasms are involuntary muscle closure of the eyelids. I get 12 Botox injections around each of my left and right eyes. I knew about Botox before Madonna did. "Smiling". But, I wasn't getting botox for wrinkles. To tell you the truth botox will make your wrinkles worse in my opinion. Botox doesn't last it wears off. In my case Botox in small units would paralyze my muscle spasms and the result of the botox injections would make my eyelids open up. Well, when I hit my late twenties I still knew there was something wrong. I always thought I had a brain tumor. But, nothing ever showed up in an MRI. (Depending on who was reading the MRI)
Home Thank goodness I had wonderful parents. I ended up living in my parent’s basement apartment. I lost everything. My job, my independence, even friends. Well were they really friends? I did have one cat and one dog I loved dearly. My pets helped me keep my sanity. During a visit with my neurologist to receive my botox injections he told me I had Nystagmus. Nystagmus is "Jumping eyeball movement" and this concerned him. He ordered an MRI. I was worried. Well, that explained why I would trip over a match "Literally” This Nystagmus caused me not to go outside. I was afraid. Imagine not being able to see the edge of a sidewalk or a crack. It was scary. I fell in an elevator shoot. Thank goodness it was only a three-foot drop. That was bad enough.
Home My neurologist then referred me to a neurosurgeon. Thank goodness for MRI's. I was so happy I had a name for everything. I searched the Internet. Joined support groups on the Internet. And I created my own yahoo chiari support group. I did my homework. I was ready to question my neurosurgeon for my first visit. I even typed up my notes. In the meantime my life stopped. I was just getting worse. Putting more weight on. Vision getting worse. I remember when I would move my head in a slow motion from left to right shoulder to shoulder I would hear a scrunching noise in my head. Like bones creaking. I hated it ...
My neurosurgeon explained the whole surgical procedure to both my parents and I. So, now it was the wait for a bed. On April 2, 2003 I received a phone call to go in the hospital. That day I was so nervous. I hoped and prayed for the best but preparing myself for the worst. That night I got various tests done as anyone would before surgery. It was one of the longest nights of my life. It wasn't an easy recovery for me. I found out I was in ICU forá days. And then remained in a step down unit forÞ days and then my private room in hospital for another week. My first night home I ended up going back in hospital I was in so much pain. At this point I was thinking what have I done to myself! There were about 40 - 60 staples up the back of my neck to the top of my head. I had a lining of a cow's heart for a bovine Dura Graft. No Moo Jokes please. " Smiling" ... How they made more room for my brain was my neurosurgeon did a Laminecectomy of the c1, c2, and Partial of the c3, which is partial removal of the cervical spine. And some other fancy terminology. However, I still have headaches. I should work for the weather network. When there is a high pressure coming in I usually end up in bed. I remember my first fall and of course I hit my head the first and only time ... I am very cautious of my head. Also, I have permanent brain damage. I see spots 24/7 even when my eyes are closed. It looks like this. but the dots are gold and black this Thank you for taking time to read my story. It is impossible to fit in all my story. Just remember you are not alone and if you are there is no need to be alone if you have Chiari. Please don’t hesitate to e-mail me at the below address. (Picture of me today -2008 - below)
Arnold Chiari Malformation
Chiari is Pronounced = KEEY- RR- EE
I always knew at a young age that there was something just not right with me. I never felt good. I was always tired, had a headache, “I fell asleep in class in grade one.” I was known as little Debbie. So short and had white hair. So blonde. MY eyes were extremely small.
Also, I was always dizzy, clumsy ... oh was I clumsy. I would make a great stunt person for
However, I don't blame my parents for anything. They brought me to so many different doctors/specialists. “It was attention” they all said the same thing. This made me depressed as a child as well. No one believed me. Having anxiety attacks on top of everything else.
Whenever I would go to Gym class, run, laugh a lot, cough a lot ... I would get a headache. It felt as if I was walking on my head (a lot of pressure). And I walked like a duck. I waddled. The pain was awful. I ended up missing allot of school because of the pain. 
And, people would make jokes about my eyes. As my eyes would close a lot involuntary and my eyes were extremely small. Bright lights hurt my tiny eyes so much that my eyes would just burn like they were on fire. I was finally diagnosed with Blepharospasms in
In my late twenties I started to notice that I was really sleepy during the daytime, dizzy, choking on food, I found it hard to swallow food, tingling in my hands and feet. Then I had no feelings in my hands. I couldn't tell the difference between hot or cold water. I had to turn down my hot water tank so I wouldn’t severely burn my hands.
Then, I was diagnosed with Sleep Apnea and also GERD. This was frightening, as I would wake up during the night choking on my food. I had to leave my job. I just couldn't go on working without getting any sleep. Besides I was so clumsy, and having a lot of headaches. I really believed my life was over. I was sleeping during the day. Awake all night. I was scared and lonely. I didn't know what was happening to me. It felt as though my body was deteriorating. I couldn't even wash my own dishes, as I had no feelings in my hands. Trying to walk anywhere was impossible as I suffered from severe vertigo.
Also, I could no longer read. My eye problems were to bad. I couldn't read "The Telegram anymore or any books. That's when I started to put weight on. Well who wouldn’t? Not eating right, not sleeping right. Well sleeping all day and snack at night. At this point my Sleep Apnea was so bad I needed to sleep in an upright position. I would sleep in a chair. I made my living room into my bedroom. My parents did get frustrated with me at times. Sometimes they
didn' tunderstand. But, still very supportive..
When my neurologist got my MRI results back. He told me what was wrong. I couldn't believe I had a name for all my symptoms. It was Arnold Chiari Malformation" I can remember the day so plain. He called about 6 other medical students in to look at my MRI with my father and I. There it was my worst enemy. Chiari.
( Picture to the left I am on my way to an appointent. My life in this picture is deteroriating ) My neurosurgeon knew a lot about Arnold Chiari Malformation (ACM, Chiari). He wanted me to get another MRI and decide on if I needed brain surgery or not from the out come of this MRI. I thought "Brain Surgery". My neurosurgeon sent me to different specialists, asked me to think about the quality of my life before he performed decompression surgery for a Arnold Chiari Malformation, 20 mm Herniation. My Cerebellum was 20 mm too long. The Cerebellum was blocking my spinal fluids and causing me to have most of my symptoms I explained in this article.
It was a big decision to make. "Brain Surgery" I knew I had the support of both my parents. I didn't have any children. Well Lucky (Now deceased dog) and Missie my cat to take care of. However, they lived in my parent’s basement apartment. And my parents would help me take care of them. ... ohhh and take care of me after my decmpression surgery.
Home
The big day was April 3, 2003 at 7:00 am in the morning I was wheeled on a stretcher into a waiting area before going in to the O.R. That was extremely difficult and emotionally draining lying there waiting. I prayed and thought happy thoughts. I assume if I was really nervous a person could be sedated first.
After surgery I could read again, got the feelings back in both my hands, my sleep apnea improved, however, my quality of life is a lot better since surgery. Decompression Surgery helped a lot reducing my nystagmus symptoms. I took my time letting myself to heal from surgery. Please if you are having surgery "Give yourself Minium 6 months to recover" If you can give yourself one year. That's what I did. And it played a big role in healing properly.
would be a bad day.
( Picture to the left is one year and six months after my surgery I went out to dinner with a friend )
Some Neurologist's, GP's, and many others in the health field don't have any idea what Chiari is. I will share one story for now. I remember getting x-rays done. The doctors kept looking for the bones in my neck. They wouldn't listen to me. They had me holding weights for the purpose of the x-ray. I am not supposed to lift anything over 5 lbs as the bones are partially gone in my neck ... I just think of how much it hurt at the time getting the x-rays ... Remember I am not complaining ... Just an example …
Thank you,
Debra Murphy
E-mail Debra Click Here
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