recently diagnosed with Chiari and so lost!

[sunshine82208]

Hi everyone!!

I'm posting here hoping to shed some light on my condition.
I was told yesterday that I have Chiari Malformation type 1. I went to my doctor in December with sudden, persistent migraines. she tried to help, but nothing worked, so I was referred to a neurologist. He gave me preventative migraine meds and ordered an MRI. This was almost a month ago.

Yesterday, my primary care called me and said she wanted to talk about my MRI. she said "everything looks okay" but there was something she wanted to talk about. That's when she let me know that I have this malformation. She did not go in depth with any information, and apparently my neurologist has not even recieved my MRI yet.

I am just very lost here! As someone who works in the medical field, it's a strange feeling to be so lost on a condition.
I don't know what my next steps are. do I look for a neurosurgeon? I think any advice would be very welcome at this point. I don't think this has sunk in yet how potentially serious this could be!

any comments, suggestions, advice, anything is greatly appreciated! lord knows I really need it right now.

thanks everyone!!

[tofers]

Hi! I too was recently diagnosed with CM1. I had my MRI on January 8th that discovered the Chiari. My ENT ordered it because of some dizziness and pulsatile tinnitus I was having in my right ear. (they were looking for a tumor)
When the ENT called me he said I didn't have a tumor (thank the lord!) but I did have this really interesting thing they call Chiari Malformation. I didn't know what he was talking about. I had never heard of it so I brushed it off. He advised me to follow up with my PCP because this was out of his realm of study. I waited a day, then googled it. I read through the list of symptoms and got chills instantly. I knew something was wrong with me and had been searching for the last few years with every test coming up normal. I felt lost too. Research seemed to come up with so many different stories, and some were frightening. I didn't really know what to do either. I started with calling my PCP and telling her nurse what the ENT had found. She set up an appointment for me the following week. During that time, I did as much internet research as I could. One thing I did was look at the doctor list they have here in this community to locate a chiari expert. I found one that is just 3 hours away. I googled that doctor over and over again. I went to my appointment with my PCP and she was super supportive. Told me she had to send me for an eye exam and to a neurosurgeon. I said "Great! I know who I want to see." She sent a referral. My appointment isn't until May 28, but that is what I expected. I am happy with that. Some insurances require a referral so you may need to check on that. I think that with a lot of chiari experts the patients go to them self referred. You want to see a chiari expert, and I think research is a good place to start and then maybe go back to your PCP with that and see if she will refer you. I wish you the best. You are not alone!  

[selmaS]

  Hi and welcome to the Chiari forum.

Many have felt just as you do, not knowing where to turn next....and it is frustrating as it is hard to find a  Dr that is informed and experienced....

The next steps would be to have more testing.....besides knowing you have Chiari  it is important to know what other related conditions you have and just how your Chiari is affecting you and your overall health .

Many of the related conditions can cause many of the same symptoms, so keep track of what symptoms you have as they can come and go and change so often it is hard to know if what you are dealing with are all from one condition...so it can help the Drs sort it out.

Educate yourself as much as possible on Chiari and ALL related conditions....and research true Chiari specialists....we do have a list here to help you get started...keep in mind the list is not a referral nor an endorsement for the Drs on the list, as it is meant to be a tool to help you know where to start....

Also keep in mind it is possible you may have to travel as the Drs for this condition are rare...not the condition itself...and know you are not alone.