just had to ask anyone here have or know someone who has Chiari???

Discussion in 'Family Life - Stories, Pictures & Updates' started by shadowpaints, Dec 14, 2009.

  1. shadowpaints

    shadowpaints Chillin' With My Peeps

    Jun 20, 2009
    Rigby, Idaho
    Hi all! i am a 26 year old woman that has Chiari Malformation type 2. my 4 year old daughter also has it and she is type one. im just wondering if anyone on this HUGE board has or know someone who has Chiari??? Chiari is a malformation of the Cerebellum... which can cause many serious conditions . here is a link to read about it.... http://www.ninds.nih.gov/disorders/chiari/chiari.htm

    i
    had decompression surgery and a c1,c2 and c3 lamenectomy in 2006. im in daily pain and when i go to the ER when i have a worse than normal migrane, i dont get the best of care as Chiari is so rare still. any who i thought it would be nice to find someone who has Chiari and has chickens LOL [​IMG]
     
  2. chixie

    chixie Chillin' With My Peeps

    Apr 6, 2009
    kountze texas
    I have type one...It is already down to my c-2... and the neuro surgeon says that I will need surgery when I get older... I cannot work because i get major headaches and about pass out and I fall alot... 2 doctors missed it... and try to put it on your medical history at the ER and they think your making this up... It is sad when you have to tell the doctors what it is... also cannot get ssi because I am married and my Husband works and cannot get insurance to pay for the surgery because it is preexsisting... and aparently I had symptoms for years and just didn't know what it was
     
    Last edited: Dec 14, 2009
  3. shadowpaints

    shadowpaints Chillin' With My Peeps

    Jun 20, 2009
    Rigby, Idaho
    ditto !! the ER here thinks im a druggie. i have the paralisis and several other problems. but it is a LOT better since i had the surgery . i can function now! not pain free.. and still ahve some issues but i can enjoy my life a bit better. i have been having symptoms since i was a child, all the DRs shrugged it off thinking i was looking for attention after my parents divorce. i refuse to go to the ER any more for pain relief. i cant take the accusions! i dont have insurance either,since its pre existing no insurance will touch it and hubby makes too much for a state health card.

    its rough isnt it?? it seems as though your all alone too even with family around... ill never forget my fathers face when he came and saw me in the hospital and the nurses told him that all my migranes, balance issues, numbness issues, sleep apnea and swallowing problems were NOT made up and that i have had Chiari my whole life. i felt awful in one way seeing my dad so upset and then again all the things i complained about as a kid are now being proved true and now he knows i wasnt lieing!

    ((hugs)) us Chiarians have to stick together!! do you have a face book?
     
  4. chixie

    chixie Chillin' With My Peeps

    Apr 6, 2009
    kountze texas
    I wa made fun of by my family as a child..Becky has two left feet,,I was always clumbsy and no one ever suspected a thing... my migraines(or so i thought they were migrains) started in junior high.. and to this day If I laugh to much or cough the headaches hit hard abd fast aand I almost black out... My mom and sister moved on my property so they kind of keep an eye on me incase I ever black out or start having seizures(which I was told could be a possibility)... they now know when I am having my headache and are able to catch me if I start falling... I actually scared the mess out of my daughter(she's 18) cause if her couch wasn't there I would have hit the floor... I am sorry that you are having so much pain...My kids get some medical coverage and so does my Husband... If I want help (ssi ) i would have to divorce my husband...and thats not gonna happen anytime soon... And I am glad to finally meet someone who is going thru the same thing and who understands... I found out that I had it when I got hurt at work and had to have neck surgery
     
    Last edited: Dec 14, 2009
  5. shadowpaints

    shadowpaints Chillin' With My Peeps

    Jun 20, 2009
    Rigby, Idaho
    your name is becky also?? i go by Becca!! lol too funny! i have the siezures and many other issues... when my youngest started showing symptoms i had a MRI done for her... in fact both my daughters have had the MRI just to catch it early as it CAN be hereditary.

    i know that many people with Chiari can never get SSI as most DRs out there think that its livable. my hubby also makes too much for me to get ssi . Chiari is a awful syndrome and it is very devetating... i hope and pray that there is a better treatment OR cure someday. i would never wish Chiari on even my worse enemy. i have been told that i wil have to have anther surgery in a few years. im trying to avoid it. i have tried a ton of meds and nothing helps.. so i deal with it. the insomnia is the worst espesially this last week....... 5 tylenol Pms seem to help . i cant take codien or other pain meds i have built up a tolerance to them. i am allergic to all mophine products ( that made the post surgery in ICU painful!) there is only one med im not allergic to and its not prescribed to use at home and thats why the ERs calll me a druggie. i can only take one pain med that works and that im not allergic to! GAH! its so frustrating ayou know! ah well tho! ill continue to live day to day and do my best.

    what year were you diagnosed?? i may beable to help you find some way of getting the surgery. if your interested. there is a lot of Chiari resurch going on now!

    ((hugs))
     
  6. chixie

    chixie Chillin' With My Peeps

    Apr 6, 2009
    kountze texas
    3 years ago...and strange my name is rebecca.. nice to meet you...
     
    Last edited: Dec 15, 2009
  7. shadowpaints

    shadowpaints Chillin' With My Peeps

    Jun 20, 2009
    Rigby, Idaho
    ditto! [​IMG] its still so weird for me when somene notices the scar on the back of my neck, i tend to forget about it ! more than once i have went to scratch my neck and i jumped at the texture of the scar. the surgery really did help a lot. im sad tho as i missed the first 6 months of my youngest dds life as after her birth i started getting worse and thats how they diagnosed me.

    its amazing how many of us Rebecca's are out there! [​IMG] very popular name!
     
  8. chixie

    chixie Chillin' With My Peeps

    Apr 6, 2009
    kountze texas
    I have a cousin with the exact same name Rebecca Ann... very strange at family get togethers trying to figure out which one the are talking to..
     
  9. shadowpaints

    shadowpaints Chillin' With My Peeps

    Jun 20, 2009
    Rigby, Idaho
    not a good day today.. i have the usual naesous/dizzy/ heavy feeling that i get when im close to having a seiziure... only thing that is missing is the aura in my vision. my dog, merlin who is very alert to my seizures and can tell me hours before i have one is following me around i expect he will soon start jmping on me and barking.. telling me it will be soon. the seizures are a weekly occurance and im used to them. kinda scary when im by myself tho. my oldest DD knows if something REALLY goes wrong merlin will go to the front door and that she is to let him out.. he will go straight to my friends house down the road and paw.scratch and bark at the door till someone answers. i worry daily that im going to have a seizure and my dog is not gonna realize it in enough time to tell me so i can get somewhere safe like my bed.,. i worry about falling and hitting my head.... merlin has never been wrong tho. he even warned me once when i had him with me in walmart.. he has been a life saver literaly! im very lucky to have him.
    im so tired of the pain .
    any who,
    i wanted to see how you were doing today, Becky i sure hope your day has been much better than mine.
    ((hugs))
    Becca
     
  10. chixie

    chixie Chillin' With My Peeps

    Apr 6, 2009
    kountze texas
    MY dad was great...I am sorry that you had a rough day. I ope today will be better for you
    Becky
     

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