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My Life Now, Living with Chiari Malformation type 1

Last year in April 2013 I was diagnosed as not having strokes. But with a life altering diagnosis of a malformation in my brain. It is called “Chiari (Kee-ar-ee) Malformation Type 1.”
Most everyone knows or has heard of “Spina Bifida.” Spina Bifida is Type 2 Chiari. This malformation in my brain causes the cerebreal fluid to build up and causes pressure on my brain, spinal cord and spinal collumn in my head and neck. The pressure builds up because the hole on the right side of my brain did not forme properly while I was in my mothers womb. The spinal collumn and fluid opens up to our the brain. Then we have cerbrial fluid holding our brain in place so the brain does not bounce around in our skull. The abnormality is life threatening, can be relieved if I was able to afford the brain surgery. Here is a link to the Mayo Clinic about Chiari.
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All these years I thought these dark circles were getting worse because just my sinuses because my sinuses seem to be all mucked up with fluid, which affects my nose, ears and throat. Come to find out the fluid is building up so much pressure its just got to find somwhere to go. This is the scarriest time of my life. Last year I had soooo Much on my mind, I had to interpret this. I had to accept this, and I had to learn that I am literally no longer able to do what I love to do, want to do or use to be capable of doing. That sums up Pushing my vacuum cleaner, lifting anything from below my waist line and the list goes on and on.
I had started to become involved with Yoga prior to the Emergency Room and hospital diagnosis. When I asked my doctor if this Chiari is dangerous, he replied Yes. When my husband asked if I had any limitations or could I go back to my every day life, my doctor took a deep breathe, he looked down at the floor, then lifted his head and looked deep thru my eyes into my heart and soul and said these words:
“Brenda, if your stomach muscles tighten during any activity, stop that activity immediately.”
I said, WHat, can you explain more please?
He said, No More Yoga, no more pushing and pulling the vacuum, no more going up and down stairs as normal, you must step one foot up, bring your other foot up to the same step and so on, if you like to cook, no more bending over to put anything into the oven, do not lift anything from the floor, do not reach above your head, if its at waist height and anymore than 2 or 3 pounds please ask for help…..," and On and On it went. He made himself perfectly clear. I however, was Not accepting this. It took a very very long time.
My abilities and Free spirit are Limited. I pushed myself to see how much I could do and went straight to dienial. I ignored it all. And everytime my hubsand stopped me from doing something I would get so mad, telling Him I am perfectly capable, and my sons were suddenly appearing to do more, and I didnt even realize that juist maybne my husband had a talk with them about making sure I dont over do it when he is not around.
Well, I over did it alright. I over did it because I pulled christmas gifts down form a high place with out help. I carried stuff that I should not have carried, I bounced up and down my stairs like any normal person who is only 34 years old would do, I wrapped gifts for my babes And when my husaband got home from work that day he took what I had wrapped up the stairs to the tree and I got pissed off at him. All the while he never said a word, he just smiled and had so much patience with me. Not a word was said. On December 23rd we had fun dumpster diving at a local furniture store, they had slightly used furniture that had been returned in a gignnatic dumpster, We pulled a small two seat sofa out and took it home. On December 24, I was secret santa and pulled an act of Angelic Divination on my soul friend, and life seemd great. On December 25th, we woke with no heat so we went downstairs to start a fire and the kids had their presents opening in front of the fire. It was so calm., My two dearest friends came and spent the entire day with us, I cooked a ham in my oven, I made a small meal for dinner. We didnt have much. The next day, on December 26th, something went horribly wrong, And Today I am sitting here taking advantage of these moments of clarity I am having,
I am on a the only medication available that has been used to treate Chiari. It is helping, But I am not the same anymore.
Life with Chiari type 1 is not a joke, and I hope this imformation is recognized. If I didnt know I had Chiari, I would have thought I was having the worst migraine of this entire world combined, I would have never gone to see my doctor immmediatly and I could have died.

Journal Comments

  • Jane Neill-Hancock
  • Brenda Dahl
  • ellismorleyphto
  • BCallahan
  • Brenda Dahl
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