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Frustrated with Chiari and Doctors

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Old 08-25-2015, 05:50 PM   #1
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Default Frustrated with Chiari and Doctors

Hi i have Chiari plus a bunch of other diagnosis and sypmtoms. I was diagnosed in 2010 and had surgery two weeks after being diagnosed. Now i am not going to talk bad about NS in general but i was really let down when i started having problems and the NS that did my surgery did two things: He refused to see me and told me i was cured - he also told my employer at that time that i was cured. now i know this is not a correct fact that just because you have surgery everything is fixed. i understand that symptoms i had before would most likely still be a factor what i wasn't told was once the pressure area was removed i could get further problems as a result of my brain stem being compressed for so long. Any way i have had to start over several times with new PC's i was given another MRI i now have white matter on my brain and also the Tech had no training in Chiari as to whether the bovine was holding up i laid on that mri machine for two hours and the whole time i was flopping like a fish out of water ( this has never happened to me before during an MRI) i told the tech that it had never happened before. I am getting really fed up with Doctors i am now unable to work due to a multitude of issues that hinder my daily routine that i had before. every new doctor i ask to be given a referral to a chiari specialist. and i am told i don't need one. if i try to contact one on my own i am told i need a referral from my doctor. i am in pain everyday a level 3 is daily but there are a lot of times when i am at an 8 and they refuse to give me any pain meds to help me deal with this. I am so frustrated that Doctors don't know much about this condition and that i can't get the help or proper treatment that i need. it is hard enough to get insurance. But plain and simple I Need Help From Doctors I have Been fighting this for over 10 years i have been ridiculed told i have mental problems all to find out that i have a condition that is hindering my life. I am not changing doctors by the way they are leaving the practice so i have no choice but to see another one. I don't know if there are doctors on this site or not but i need help.
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Gethprime (03-10-2017)
Old 08-31-2015, 05:38 AM   #2
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Old 08-31-2015, 03:03 PM   #3
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Hi metournear

Sorry to hear of your ongoing problems with treatment.
Is there any kind of Patient Advocacy Service in your area who can assist you with representation to the medical system? Or maybe you can contact on-line a Chiari support organization that may be able to give you info on who/where to go for help in your area.

I've added here a link to the National Institute of Neurological Disorders and Stroke fact sheet on Chiari. At the bottom of the page are links to organizations in the US if that's where you're located.


All the best for getting the help you need.
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