Tuesday, August 10, 2010

Conquer Chiari Walk Acoss America ~ September 18, 2010

Do you know what you are doing on Saturday, September 18, 2010? I will be joining thousands of walkers in our third annual Conquer Chiari Walk Across America to show my support to raise money and awareness for Chiari Malformation and related disorders.

There are walks in 30 states this year ~ our goal is to someday have a walk in all of the 50 states. Here's a link where you can find a walk in your home town ~ Conquer Chiari Walk Sites. Register to walk or sponsor a walker.

This is a great opportunity to spend some time outdoors, soaking up that cool, crisp fall air and maybe you will meet some new friends who just happen to be chiarians, too. Invite your friends and family members to join you for the walk. Since most of us don't do so well with the walking thing anyway, the walk is usually short and sweet.

Here's some more info about the walks listed below. If you don't see your town, find out if there's one nearby. Just think, maybe you and some friends could coordinate a walk in your town next year. Knowledge is power when it comes to Chiari. Let's conquer chiari!

WHAT? A series of coordinated Chiari walks held at the same time across the country.

WHERE? It is our goal to have at least one walk in each of the 50 states. This year we have 30 walk locations.

WHEN? Saturday September 18th, 2010. September has been named Chiari Awareness Month in several states. In conjunction with the Walk Across America we hope to get more states to recognize September as Chiari Awareness Month.

WHY? To raise awareness of Chiari; to raise money for vital research; and to get people involved.

In 2010 it is our goal to raise at least $300,000 for research. In 2009, more than $250,000 was raised with 90% of the money going directly to fund exciting, new research projects.


Friday, June 18, 2010

Surgery Again

Anyone who has had the spinal fusion hit me up with honest info on how it went... ie recovery time, pain involved, limitations, PT, and whatever else you might think is relevant. My doctors think it is time I visit the surgeons and begin speaking to them about the fusion. I am resistant to the idea but my head and body are not cooperating with me on this.

Friday, May 14, 2010

Tuesday, March 23, 2010

Monday, March 22, 2010

Revolutionary Decompression for Chiarians!

Hello all! My name is Lori and I am a fellow Chiarian. I am the mother of two girls, ages 15 and 9. Ten years ago a man picked me up and threw me to the ground. The back of my head bounced and I believe that is when I acquired Chiari. The idea that it can be acquired is relatively new, but it is the only explanation I accept. I was normal before the incident and most definitely not normal after.

Mine started with visual distortions and excruciating headaches. Then came the anger issues and balance problems. I thought I was loosing my mind, mostly because doctors were telling me I was loosing my mind. They kept trying to medicate me with anti-depressants. Somewhere inside, I refused to believe I was mentally ill. I wasn't making this up! So, I researched all conditions that had similar symptoms. I narrowed it down to Chiari or MS. MRIs showed no lesions so it wasn't MS, but they also didn't show Chiari. Then I found an internet article on Chiari 0 which is very controversial. It made sense to me so I looked up the doc behind it and it was Dr. Dan Heffez. He was in Wisconsin, which isn't horribly far from me, so I called and set up an appt. Dr. Heffez ran MRIs I had never seen before. My old MRIs were tiny pictures of my whole head. Dr. Heffez's pics were close ups of the foramen magnum from all sorts of angles. They showed I had a 4mm herniation. The standard for Chiari is 5mm, so according to most experts I did not have Chiari. Dr. Heffez recommended surgery based off of the MRIs and neurological tests he performed in office. I knew I didn't want to be a zipperhead! It freaked me out to get my entire head slashed open -- all those staples, all that pain!! No thanks. So, I researched some more and found a blog about Dr. Di and this teacher in TX who had endoscopic decompression at the Cleveland Clinic. I made an appt, met Dr. Di, and scheduled my surgery. I had surgery, staid in the hospital for 24 hours, never went to ICU, my and then went home. My dura was scored, never completely opened, so there was no need for a cadaver or cow membrane. I have about a 2" indent under the hairline to show for it. I am almost completely back to normal now.

I tell people that I spent ten years on a couch so forgive the lack of social graces :) I do not seem to have the issues affecting those who had the traditional surgery. I am so happy to be free of chronic pain!! I am currently running a supplement trial on myself. This supplement was introduced to me by a friend who found it while researching how to help his mother with MS. It is revolutionary and brand spanking new. I am so excited by it. You can follow my progress on the supplement at mychiaribooboo.blogspot.com. I will try to keep this blog updated as well. I want to thank Q for allowing me to join and become apart of this wonderful community blog.

Love to all,