Chiari Awareness Month

September is Chiari Awareness Month

I just became aware that September is Chiari Awareness Month and here it is the last day of September. I'm becoming more and more aware everyday by what I am learning and by how my body is reacting; the last four days my symptoms have really been making me feel pretty terrible. I guess it just helps to confirm that the surgery is needed. Tomorrow I have my pre-op testing at the hospital....the time is near, it's becoming a reality.



I got this list from another Chiari awareness blog.

What can you do to help support and spread awareness for those with Chiari Malformation?
It's very simple:
Ask us about it.
Take the time to learn.
Share a link on your facebook/twitter etc.
Tell someone else about it.
Go to a Chiari Walk. (can be found on Conquerchiari.org)
Wear purple this month especially.
(Join the facebook event and share it! That helps too!)

Chiari Malformation is almost as common as Multiple Sclerosis (MS). You've at least heard of MS before haven't you? You may not know what it is...but you've heard of it. Chiari is so misdiagnosed that its name is not out there as is MS. About 1 in 1,000 people have Chiari. It affects more than 300,000 people in the U.S.

My Brain Is Too Big For My Skull

Posterior Fossa Decompression and Duraplasty
Yes, I know....it's brain surgery

Basically the cerebellar tonsils of my brain are descending into the spinal canal causing pressure on the nerves and obstruction of the flow of cerebral spinal fluid. This pressure has caused many symptoms throughout my body, especially on my left side. I have other symptoms that I have had for many years that also seem consistent with Chiari. The procedure is meant to relieve the pressure and hopefully restore proper nerve function so that my symptoms will disappear. I learned that people who have this procedure call themselves Zipperheads. I'll be joining the club October 11th.

The surgery involves removing a small amount of bone around the opening of the Foramen Magnum to relieve pressure. During the surgery Dr.Tyagi will be monitoring my nerve sensations throughout my body to see if they are relieving enough pressure. Then the likely next step will be to remove a small portion of the Dura, the covering of the brain, and replacing and expanding it with a bovine patch. There is the possibility of more steps to the procedure depending what is found when opening. Sometimes some of the bone of the upper vertebrae or the cerebellar tonsils needs to be shaved also. So we'll see what happens and give an update after all is said and done. I am hopeful that my symptoms will be relieved and even completely disappear, although it isn't promised.

Please pray that my symptoms will be completely alleviated, that I will have a speedy recovery and that I will have no further complications from the surgery.

Oh What a Year Brings

I sure didn't expect to be having brain surgery

Last September I began experiencing some very unusual symptoms. My face was swollen and constantly felt as if I had been injected with Novocain. This numb feeling would sometimes extend to my left ear and the back of my head. I was very unsteady on my feet and My Doctor sent me for a brain MRI, which revealed that I have a Chiari 1 Malformation. Of course I had never heard of this and took some research to understand what it was and if this was what could be causing my symptoms.

My doctor then referred me to a neurologist. Before I was able to make that appointment I began having crushing pain in the back of my neck at the base of my skull, which radiated into my left shoulder and down my arm. I had this before, but never this excruciating. I also was having double vision and slurred speech, as well as trouble with word finding at times. I was quite off balance and felt as if I could pass out at any moment. One night I woke Bob the middle of the night to take me to the hospital because I was in so much pain. I brought my MRI results along with me to the E.R. The doctors in the E.R. Suspected that I had Multiple Sclerosis or a carcinoid tumor based on how my symptoms presented. They did additional MRIs and several teams of doctors saw me. At this time they could find no reason for my symptoms and did not think that they were related to the Chiari 1 malformation. All they could say was that they believed I was having some sort of hormonal change; I guess because of my age….hmmm! I went home from the hospital a bit discouraged, feeling the same and not knowing how I was going to find a doctor that could figure out what was going on with me.

I pretty much went through the year with the same symptoms that would sometimes be very mild, but always present, and other times flare up and be quite unbearable. This spring I decided to just start making appointments, seeing several specialists and ruling out many possibilities. I did even see a chiropractor, which made me much, much worse. Finally when I went back to my primary doctor she said I should have seen a Neurosurgeon when she first gave me the Chiari diagnosis. I found out that I should never be having chiropractic manipulation on my neck and that this could be very dangerous for me. I think there was a misunderstanding, last fall when I saw one of the other doctors to get the MRI results because my Dr. was out of the office. This Dr. said I needed to see a neurologist. That’s when I had a really bad flare up and went to the hospital. At the hospital I did see a neurologist who said that my symptoms were not neurologically based. Therefore I thought I had done what my Dr. was recommending. My primary Dr. was so surprised when she heard my whole story and said, “oh no, you shouldn’t have seen a neurologist, you need to see a neurosurgeon!” Who knew that they were so different? Wow! All these months later it seemed I was finally on the right track now.

The neurosurgeon I decided to see is Dr. Ranchana Tyagi (Tea-ah-gee) at Robert Wood Johnson University Hospital in New Brunswick. She is the assistant professor of the department of surgery and director of the pediatric neurosurgery program. I chose her because of her interest and specialty working with Chiari Malformation. On my first visit I was amazed at the amount of time Dr. Tyagi spent with me hearing me out and reviewing my history and records. She referred me for more MRIs ruling out a syrinx, which was good news. This could have been much worse than it already is. I was quite surprised when on my next visit she offered surgery and said that there was an 80% chance that my symptoms would be alleviated and that it would stop the progression of my symptoms. I think my jaw dropped to the floor; it was an emotional moment. Just the thought of there being an answer and the possibility that I don't have to live with these symptoms for the rest of my life was so encouraging.

The surgery is called a posterior fossa decompression and duraplasty. Even though I knew that I had a Chiari 1 malformation and had researched what that could mean for me I never expected to get to the point of surgery. I was surprised and also relieved that someone believed me and that I now hopefully had the answer to these unusual symptoms. Dr. Tyagi doesn't even have the answers as to whether my symptoms are all caused by the Chiari. Seeing what changes after surgery may answer that, but the symptoms are not always reversed since they are caused by compression of the nerves. In making the decision about whether to have surgery or not I did a great deal of research and Bob and I returned for a consult with Dr. Tyagi so he could hear 1^st hand from her and help me to decide. Dr. Tyagi spent an hour and a half with us explaining the procedure and answering all our questions.