Tuesday, October 11, 2011

Walk Totals 2011

Congratulations to all those who participated in the Chiari Walks all over! I'd also like to say thank you to any who donated their time, money, effort, and support!

Walk totals:

Conquer Chiari Walk Across America Sites raised over $380,000!! There were 5,500 + walkers who joined in at walk sites all over. (info taken fromt their site)
That is AMAZING!

American Syringomyelia & Chiari Alliance Project have walks continuing throughout the year.

ChiariPeople of Pa had their Walk on September 17th for Wishes and Rainbows. They raised $3,100!!
Article above from the local newspaper ^

Indiana Northwest raised $27,000 with 300 walkers!!
Courtesy of my friend Carla Stone.


  1. Hello Namaste ! it's bishnu khadka from nepal i got ur blog from chiari search so i am writing u i had my chairi surgery and doctors say it was successfull but it wasn't i am suffering horribly now its been four months now my whole body burning, hands and legs are weak double vision, dizziness every time before it wasn't i am very sad and hopeless .......so how is your health........Any advice or help is greatly appreciated?

  2. thuva nordquist baronDecember 6, 2011 at 6:05 AM

    hej mitt namn är thuva, jag kommer från svergie och sökte på chiari idag för jag tyckte de var lika bra att läsa lite om självaste symtomen och lära sig om det.Jag var 4 år när jag fick diagnosen chiari II,då fick jag läggas in på akut operation för jag hade ingen chans att överleva, dom sa att jag hade tur för om jag kommit till sjukhuset 1 månad senare så hade jag varit död.Allt började på mitt dagis när jag började svimma hela tiden så min mamma fick vara med mig varje dag,nån vecka senare så började migrän komma och då bestämde sig min mamma att ta med mig till sjukhuset men efter några blodprov och röntgen tester så sa dom att jag var fullt frisk.. Så klart så ville min mamma inte ge upp hoppet för hon visste att jag var sjuk och behövde hjälp och min pappa var inte med om händelserna så mycket men han började förstå att jag inte var frisk när jag började spy och sova mer än hälften utav dagarna. Min mamma fick lida mycket för hon var mitt objeckt som jag ville döda när jag var liten , varför vet jag inte men jag var ju inte frisk så jag kunde nog inte hjälpa de.
    Jag minns knappt inget av min barndom när jag var 4-3 år för jag fick så många minnesluckor och trillade ner för våran trappa många gånger när jag svimmade.Doktorn skickade hem mig efter alla prover och sa nej till att skicka mig vidare till läckare som kunde mycket mer än han själv, när min mamma fick höra att han sagt nej till fler prover så började hon skrika åt han att skicka vidare mig till ett annat sjukhus, han skrev i journalen att min mamma var sjuk i huvet och säger att jag är sjuk men jag är helt frisk.Men de fanns en ängel hos mig som trodde på att jag var sjuk för hon hade själv sätt hur sjuk jag var , hon gjorde valet att skicka vidare mig till ett annat sjukhus och förlora sitt jobb för att rädda mig. Vilket jag är idag väldigt tacksam över. Jag åkte dit och fick diagnosen chiari II , ingen i svergie viste vad chiari var då men många läkare fick sätta hela sin kraft på att försöka lära sig om de och inom 1 månad operera mig. Hela operationen gick på 6 timmar och efter 7 dagar i koma så vaknade jag och var frisk. Men jag har fortfarande huvudvärk varje dag och har väldigt ont i kroppen men jag tar medicin för sånt. Annars är jag helt frisk!
    I hope you can translet every word that I whriten, you are a strong girl and I understand your happines and I think we all do! :) have a nice day :)

  3. Thank you all for reading/commenting!

    Check out chiarisupport.org it is a great site for support:)

    Bishnu Khadka- I still have issues after I've had surgery. Unfortunately, surgery is not a cure. It is just a form of treatment. For most it helps alleiveate pressure on the skull which helps some of the head pain. For me, it has helped. I do not get the same pain I had before it. Though I still have bad days and TONS of symptoms. I wouldn't want to go back to what I was experiencing then. Have you gone to your NS for a follow up?

    (in case anyone else would like to read:
    hello my name is Thuve, I come from svergie and searched for Chiari today because I thought they were just as good to read a little about himself, the symptoms and learn about det.Jag was 4 years old when I was diagnosed with Chiari II, then I added the for emergency surgery because I had no chance to survive, they said I was lucky because if I come to the hospital 1 month later, I had been död.Allt started at my daycare when I started to faint all the time, and my mom will be with me every day, some weeks later it started to get migraines and then decided my mom to take me to the hospital but after some blood tests and radiology tests as they said that I was perfectly healthy .. Of course so did my mom do not give up hope because she knew I was sick and needed help and my dad was not with the events so much, but he began to understand that I was healthy when I started to vomit and sleep more than half out of days . My mother suffered a lot because she was my items that I wanted to kill when I was little, so I do not know but I was not healthy so I could probably not help.
    I remember almost nothing of my childhood when I was 4-3 years because I got so many blackouts and fell down on our stairs many times when I svimmade.Doktorn sent me home for all samples and said no to sending me to the leaks was much more than he himself, when my mother heard that he said no to more samples so she started screaming at him to pass me to another hospital, he wrote in the journal that my mother was sick in the head and says I'm sick but I'm totally frisk.Men they were an angel with me who thought that I was sick because she had herself way how sick I was, she made the choice to pass me to another hospital and losing his job to save me . Which I am now very grateful. I went there and was diagnosed with Chiari II, none of svergie knew what Chiari was then, but many doctors had to put all their effort into trying to learn about them and within 1 month of surgery myself. The whole operation went in 6 hours and after 7 days in a coma so I woke up and was healthy. But I still have headaches every day and have very sore body, but I take medication for that. Otherwise I'm perfectly healthy!)
    Translated through Google and with the help of a friend from hexrpg.com
    It didn't translate every word.

    I am glad you are doing well. I hope you check out the chiari support website. It is a great place to meet Chiarians from all over the place. I have met a lot of people through Chiari. It is nice to have others to support you, who know what you are going through.