Frustrated with the Dr

So I went to my Dr today thinking that I would see my Doctor and get to talk about how terrible I have been feeling but no, I see his nurse lady ( who I have never seen before ) she made me feel like I was crazy BTW. Every symptom that I had was from something else my constant head aches are from not sleeping well, my dizziness is from an inner ear issue, she acted genuinely shocked that my blood pressure wasn't high because of my weight. She would not answer any of my questions. I feel like I am loosing my mind. I am having issues with words at work, having issues with my vision, my head aches seem worse not better. This whole day seems like a huge waste of my time.

I’m so sorry that you were treated this way. Most people just can’t understand what we are going through, even medical professionals unfortunately. I was told by my neurologists that chiari doesn’t mean anything. It really makes me wonder how many people with chiari have been told this, and are still suffering. It makes me very angry at the way chiari sufferers are just dismissed, and that there is very little awareness about it. Maybe someday it will change I hope.

Kelly :slight_smile:

Sorry the visit was a dissapointment. Your health is the most important thing. If the current dr doesn't take you seriously, you should find a better one. Don't let them waste your time on the expense of your health.

Best wishes, Kristine

I just feel so alone. Its weird my Dad has this as well but has never had any of the symptoms that I am dealing with and lately mine seem to be getting worse. No matter how much sleep I get my head still hurts every day all day. I feel like I am loosing my mind all I want is to not be in constant pain. I want to play with my daughter I want to laugh with my friends I want to not have my happy moments marred by being in pain. Everyone says ohh you look so happy we never know that you are hurting. Well if I cried and complained every moment I was in pain that's all I would do.

Yes, Chiari can differ very much across patients. Most people here suffer from terrible pain, but I don't. I don't know how it feels like to be pain free for an hour, but it's not that bad. When I describe what my head feels like, the doctors call it pain. I have stronger pain in my back and muscles, the kind I do consider pain, not discomfort. Despite not having strong headache, my condition is so bad(and getting worse through the past year) that the NS didn't want to waste a day.

It sounds like your headache is like my fatigue- no matter how much sleep and rest you get, it never gets better.

Don't let other peoples inability to see how much you hurt stand in the way of you finding good medical help! Do not doubt the fact you need medical atention. Chiari is complicated and there are no guarantees. But I know- in case you need surgery, there's ~ 75% chance it'll help. :)

Hope you find a great doctor soon!