Hi everyone. I was diagnosed back in June of this year after going to the doctors for 4 uears. I found one doctor who actually cared enough to send me to get a MRI done. It showed im at a 7.5. They sent me to a neurologist but i was told im fine that my chiari is not my problem so now im suffering every day. I cant work and hardly able to take care of my three amazing kids. I found this website while searching for a group because i feel alone and sometimes feel hopeless.
Hi, Jennifer! Really sorry you're not getting the help you need.
As I have learned, if we don't get lucky enough to randomly run into a doctor who understands chiari, the only way to get real help, is to educate ourselves hard and push, push, push for answers. I know it is really hard, but more often than not, we have to fight relentlessly to find the one doctor who will believe and help. A doctor is someone who should try to help you when you have health problems. If they are not doing that basic thing, then you should not waste your time on them. Find a better doctor! Because chiari isn't something that will just go away. You only should stay with the doctor you feel you can trust with your health in long-term. Someone who with their knowledge, attitude and honesty will make you feel safer even with all the unknowns of chiari.
I know this kind of experience with doctors can be very discouraging, but we need to stay strong for ourselves. We know there is something wrong with us, and it's sad that we have to work so hard to prove it.
In the end we are much stronger than we think. Keep your head up and keep steering towards a better future! :)
Best wishes to you and your great kids! :)
HI, Jennifer I.m sorry your doctor does not believe Chiari is causing your systems.
I was in a similar situation when I was first diagnosed. My malformation was just under 5. One doctor told me it wasn't large enough to cause problems. Another told me I was not symptomatic enough for surgery. I had one who would not even talk to me based on the MRI. I finally found a doctor who listened to me and decided surgery would be beneficial. During surgery he found out I was blocked more then the MRI showed.
Please keep searching for someone who will listen to you and take your concerns seriously. meanwhile, listen to your body, charious your good days and educate your self. you are your best advocate. stay strong and good luck.