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Chiari & No insurance, No surgery

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Nissa325
Nissa325

Hey everyone, so I was diagnosed with Chiari in 2016 after I finally decided to go to my PCP and tell her that for a year my face, hands and feet were going numb along with headache, especially the ones that felt like I was getting hit with a bat in the back of the head when I coughed or laughed to hard and my neck was "locking" on me when I turned to fast to look another direction. CT scan and MRI showed Chiari Malformation. I was referred to a neurologist who recommended me to see a neurosurgeon however he is SO expensive and I don't have insurance, financially my family has been hit in every direction. So I've pushed it off. I'm currently on meds for the headache and neck pain. The neurosurgeon also doesn't accept any form of financial assistance program through the hospital. My job doesn't provide insurance. So how long can I go living this way without the surgery? My neurologist has recommended that I don't drive long distance anymore, because of my neck and that if I have a syncopal episode or get paralysis to get to the ER immediately. kinda sad, but I'm waiting for the day that I hit the floor for it to be the day I have surgery, as a person in healthcare I Know I can't get turned away then? But also I know it might be to late.

P.S I have tried to do what I can to get healthy, I workout, eat right, I've lost 56# and it's helped with some of my symptoms, like the balance issues, tingling in my feet and hands,the ringing and swooshing in my ears has significantly calm down. Unfortunately I still have a lot of other Chiari symptoms.

0 likes, 4 replies

4 Replies

  • kathy14843
    kathy14843 Nissa325

    Posted

    Each state has different programs for aid. I was a level 6 and needed and got surgery. The worse it gets can become permanent disability. I have known people to get free procedures through Cedar Sinai or 7TK day Adent Hospital’s. If Southern California. Pray all goes well. 
  • b2wc97455
    b2wc97455 Nissa325

    Posted

    Hi Nissa, please try this organisation give them a ring:

    The mission of Chiari Fund is to serve patients with Arnold Chiari Malformation and Related Disorders by providing monetary and assistance based on need for medical and non-medical expenses. Our hope is that community of patients and their families have the means and support necessary to continue their care.

    phone: : 843-203-8836  -  [color=#938b8b]To Contact Us By Phone Please Call: 704-831-8229

    ''[/color][color=#938b8b]Our means of financial assistance are helping those in need seek medical attention by paying doctor bills, hospital bills, and other medical related bills. We will also provide assistance by helping individuals with travel to and from doctors and/or hospitals. Furthermore, those that are in need of assistance in paying for electricity, water, gas, etc. will receive direct aid. These programs are implemented regardless of race, color, gender, national origin, age, religion, creed, disability, veteran's status, sexual orientation, gender identity or gender expression''

    Let us know how you are doing once you contacted them - GOOD LUCK[/color]

    • Nissa325
      Nissa325 b2wc97455

      Posted

      So y'all help people with Chiari get the surgery? I live in Texas and in a small rural town, so my Nuerologist is 45 minutes away and I have only 1 nuero surgeon I can go too.

  • b2wc97455
    b2wc97455 Nissa325

    Posted

    Dear Nissa,

    Call them, discuss with them..it is suppose to be organisation which will help any chiari patients around the US it does not matter which part of US you are..give them a ring ..YOU HAVE NOTHING TO LOOSE - let us know how are you getting on

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