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20874427 tn?1587995857

how can i get a chiari malformation advocate?

Hi,
I am a 57 year old Woman & Widow that has no Family and i am on Disability due to all my surgeries and  live in Port Huron Michigan... i  live in constant unbearable pain. and i want to give up cuz i can't take it no more so can someone help me and be my advocate and my story made national news due to tragedy and i have PTSD but they made me choose between my nerve pills and pain pills..I have had multiple shunt surgeries for Pseudo Tumor Cerebri that went on for 15 years and 37 shunt revisions. Now I have Chiari Malformation, Pulmonary Hypertension, and my diaphragm is 75% paralyzed. My spine has about 5 or 6 diseases including severe DDD, disk bulging and protrusions, severe stenosis, spondylosis, scoliosis etc etc. I can’t get out of bed nor wash myself and I have no life left. The pain doctors are too afraid to write anything or they say anything over 3 Percocets  is way to much and the opioids are all that works. I am not allowed injections of any kind because of the Chiari. Nor can I take Tylenol or Aspirin or Motrin or steroids due to liver and kidney failure. I live alone in Port Huron Michigan with no family, and do not know where to turn for help. I’m also in heart failure and just wondering how much my heart can take? This is not living, and the pain meds helped me at least cook for myself and shower myself. At this point I do just want to give up because the only thing I have to look forward to is more PAIN. Wished something would budge a little. DOES ANYONE HAVE ANY SUGGESTIONS…
3 Responses
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620923 tn?1452915648
COMMUNITY LEADER
Hi and weelcome to the Chiari forum.
I am so sorry that you are alone to deal with this, many times we are our own advocate as many even with family can not rely on them as many do not understand that Chiari can cause the issues/pain that it does.
Since you can not advocate for yourself or have anyone to fill that role, I am not sure , but will look into it for you....please have some patience as I do some research for you....I am not sure how long until someone gets back to me.

May I ask a few questions....first is your Chiari acquired? Or do you feel it may have been overlooked all these years? When did your story make the news? How was it featured?

Have you tried CBD or medical MJ?
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Hi Deb...I have some information from an orginization that can offer you some help....I will sennd you the information through a PM ( private message) as I can not post phone numbers on the site.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
Please get in touch with me.....
Helpful - 0
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