Go Back   NeuroTalk Support Groups > >

Frustrated with Chiari and Doctors

Reply
 
Thread Tools Display Modes
Old 08-25-2015, 05:50 PM   #1
metournear
Newly Joined
 
Join Date: Aug 2015
Posts: 1
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.
metournear is offline   Reply With Quote
"Thanks for this!" says:
Gethprime (03-10-2017)
Old 08-31-2015, 05:38 AM   #2
razzle51
Senior Member
 
razzle51's Avatar
 
Join Date: Aug 2006
Location: Iowa
Posts: 1,020
My Mood: Frustrated with Chiari and Doctors
Default

Where do you live?
__________________
Remember That Life Is Short!!!" break the rules, Forgive quickly, Love truly, laugh uncontrolably, And never regret anything that made you smile
razzle51 is offline   Reply With Quote
Old 08-31-2015, 03:03 PM   #3
bluesfan
Member
 
Join Date: Jun 2014
Posts: 733
Default

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.

http://www.ninds.nih.gov/disorders/c...ail_chiari.htm

All the best for getting the help you need.
bluesfan is offline   Reply With Quote
"Thanks for this!" says:
Lara (10-13-2015)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Frustrated and annoyed with pain doctors office today. MessyMark SCS & Pain Pumps 25 09-03-2013 09:09 PM
Frustrated with doctors... abbyrition General Health Conditions & Rare Disorders 10 07-26-2013 02:05 PM
im new here! have chiari looking for good dr. in middle ga exp with chiari!!! gagirl74 Arnold Chiari Malformation & Syringomyelia 11 09-16-2011 12:19 PM
AZ Walk for Chiari/AZ Syringo Chiari Support Group AzSyringoChiari Arnold Chiari Malformation & Syringomyelia 3 09-01-2008 06:35 PM
Frustrated with Doctors... colleen Thoracic Outlet Syndrome 16 07-08-2008 08:31 AM


All times are GMT -5. The time now is 06:16 PM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2018 DragonByte Technologies Ltd.

All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy