HELP KATHY GET TO PHOENIX TO THE CHIARI INSTITUTE!

HELLO, MY NAME IS KATHY AND I AM A CHIARI WARRIOR! CHIARI MALFORMATION IS WHERE YOUR SKULL DIDN'T DEVELOP PROPERLY, LEAVING YOUR BRAIN NO WHERE TO GO BUT INSIDE YOUR SPINAL COLUMN. I HAVE HAD HEADACHE'S FOR YEARS, AS FAR AS I CAN REMEMBER. I'VE BEEN TREATED FOR MIGRAINE'S, BUT THAT MEDICINE DOESN'T HELP CHIARI WARRIORS!  IF I GO TO THE E.R. FOR THE MASSIVE PAIN AND THEY GIVE ME DILATIN(?) IT ONLY HELPS LOWER THE PAIN FROM A 10 TO MAYBE AN 8!! CHIARIAN'S LIKE TO SAY "OUR BRAIN'S ARE TOO BIG FOR OUR SKULL'S" THAT'S THE BEST WAY TO EXPLAIN IT! ONE WAY OF EXPLAINING THE HEADACHE IS HAVING A BRAIN FREEZE THAT WON'T GO AWAY! IT'S HORRIFIC PAIN!! THEY SAY THAT IT IS AN ILLNESS SINCE BIRTH, BUT I THINK OTHERWISE. ON JAN 31, 2011 I FELL DOWN THE STAIRS OUTSIDE OF OUR APARTMENT. I WENT ON DISABILITY DUE TO BACK AND ANKLE PROBLEMS. WHEN I BEGAN TO GET MORE PAIN IN THE UPPER BACK, MY DR HAD AN MRI DONE FROM LOWER BACK TO THE BOTTOM OF MY SKULL. MY DR CALLED ME IN AFTER HE GOT THE RESULTS. HE ASKED IF I HAD INTERNET ACCESS AND I SAID YES. HE WROTE DOWN "ARNOLD CHIARI MALFORMATION" AND TOLD ME TO LOOK IT UP. HE LOOKED AT MY HUSBAND AND TOLD HIM THAT THIS IS EXTREMELY SERIOUS! SO, WE LOOKED IT UP.  WAS ONE OF THE WORSE DAYS OF MY LIFE! WHEN I FOUND OUT THERE'S NO CURE, ONLY TREATMENT'S, IT SCARED ME TO DEATH! I DECIDED TO HAVE SURGERY THAT FOLLOWING JULY. 2 DAYS PRIOR TO MY BIRTHDAY. EITHER YOU GET THROUGH SURGERY AND GO HOME IN A COUPLE OF DAYS OR THINGS DON'T GO RIGHT AND YOU END UP DEAD OR IN ICU. WELL, I ENDED UP IN ICU DUE TO THE HOSPITAL WAS UNABLE TO STABILIZE MY SPINAL FLUID! I WAS IN SO MUCH PAIN, MY HUSBAND ASKED FOR THEM TO PUT INTO A COMA. THEY SAID THEY COULD NOT DUE TO THE AMOUNT OF PAIN MEDICATIONS THEY HAD ALREADY GIVEN ME WAS ENOUGH TO KILL A HORSE AND IF I WENT INTO COMA, I WOULDN'T SURVIVE. I HAVE YET TO RECOVER FROM THIS SURGERY. I'M HAVING ALL SIDE AFFECTS OF CHIARI. I HAD CREATED A FB PAGE ON CHIARI TO JUST GET INFORMATION OUT THERE FOR OTHERS. BECAUSE WHEN I FIRST FOUND OUT ABOUT IT, I LOOKED FOR IT EVERYWHERE AND COULDN'T FIND A WEBSITE THAT WAS IN LAMEST TERMS  SO NOW I FIND OUT THAT IN PHOENIX, AZ AT THE MAYO HOSPITAL THAT HAVE SOME UP TO DATE TREATMENTS TO HELP WITH THE SWELLING OF THE BRAIN AND TO STOP THE LEAKING OF SPINAL FLUID FROM SURGERY MISHAPS. I HAVE BEEN BACK TO MY SURGEON (THE ONLY NEUROSURGEON IN NO. CALIFORNIA THAT WOULD WORK WITH ME) AND SHE TOLD ME SHE COULD NO LONGER HELP ME! SO IF I CAN GET TO THE MAYO CLINIC SOON IN PHOENIX ARIZONA, MAYBE, JUST MAYBE THEY WILL HELP ME. I NEED TO GO ASAP! THAT IS WHY I AM ASKING FOR HELP. ALL OF THE FUNDS WILL GO TOWARDS TRANSPORTATION, FOOD, HOTELS.  I STILL HAVE HEADACHE'S EVERY SINGLE DAY OF MY LIFE! I ONLY CAN PRAY THAT I COULD GET 1 DAY W/O A HEADACHE! THANK YOU AND GOD BLESS YOU ALL!!!

Donations

  • Stephanie Kovacs 
    • $45 
    • 11 mos
  • Ellen Sullivan 
    • $30 
    • 17 mos
  • Greg Bernard 
    • $5 
    • 17 mos
  • Rhonda Leigh 
    • $22 
    • 17 mos
  • keith H 
    • $5 
    • 17 mos
See all

Organizer

Katherine Moore 
Organizer
Redding, CA
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