I have read so many horror stories about Doctors shrugging off symptoms of CM and basically sending patients away with no answers or plan feeling hopeless. I am so nervous about my appointment next week. I don’t think I can handle seeing one more specialist with no answers.
I have gathered all my CTs MRIs and even X-rays from the past few years. I have blood work reports and doctors notes from my doctors and a list of everything I have been tested for, diagnosed or misdiagnosed with in my life. I have a journal I keep daily of how I feel and what is happening for the past 8 months. What else should I take? Or leave at home?
I am trying to come up with a list of questions too but Im stuck! Any good questions I should ask?
I just want to make sure the NS gets the picture of what hell I have been living for years without coming off like a crazy person (which I feel like at times).
Any pointers from your first NS visit?
If you had a bad visit how did you handle it? I’m afraid I will “lose” it if mine doesn’t go well because every single day is such a struggle the smallest “fire” sets me off these days!
It’s really sad that we have to worry about meeting with inexperienced doctors. I’ve had my fair share of this. Do you know if your NS has experience with Chiari? If you need help with this, there is a doctor tab that has links and lists of patient recommended doctors. There is also a list of questions to ask your NS on our resources page.
I hope you found a NS that will listen and take your symptoms seriously. It sounds like you are very well prepared for your appointment…good job:) If you don’t feel like the NS has significant knowledge in Chiari, please get another opinion. I hope your appointment goes well, but if it doesn’t you can definitely come here to vent. We’ll be here for you in any way we can.
The NS I chose is a specialist actually he is a contributing author for a text book about Chiari used in medical school. I have heard great things about him from a couple former patients so I am hopefully he will be a good choice!
Crystal said:
Krissy,
It’s really sad that we have to worry about meeting with inexperienced doctors. I’ve had my fair share of this. Do you know if your NS has experience with Chiari? If you need help with this, there is a doctor tab that has links and lists of patient recommended doctors. There is also a list of questions to ask your NS on our resources page.
I hope you found a NS that will listen and take your symptoms seriously. It sounds like you are very well prepared for your appointment…good job:) If you don’t feel like the NS has significant knowledge in Chiari, please get another opinion. I hope your appointment goes well, but if it doesn’t you can definitely come here to vent. We’ll be here for you in any way we can.
Krissy Ann, I know the anxiety all to well of seeing any new doctor. It is ridiculous that we have to go through this. It sounds like you have done your research and found a doctor that knows about Chiari and you are more than prepared. Just know you are not crazy. Your symptoms are real and you need to fight for your care and health. You are worth it your health is worth it and you deserve to be treated with dignity and respect. Doctors treat us poorly because they don't understand Chiari and if they don't understand it or aren't willing to learn about it you absolutely do not want them treating you. I spent years being belittled and dismissed by my nuerologist because I didn't know where else to go and was beat down by the process of seeing so many professionals that didn't understand.Those are years I and my family will never get back. More and more drs are learning about Chiari and thank god they are out there to find. If this dr doesn't work out don't give up you will find one that does. I will say a prayer for you.