Had an appt with my PCP today to discuss my diagnosis. He wanted to talk face to face.
It was very discouraging. He clearly doesn’t know much about Chiari. He told me as long as I don’t have Type 2 I should be fine and not to lean my head back. Also had no idea when I told him
I’d like to see someone who specializes in Chiari. He said that there aren’t specialists out there and that surgery will “fix” it if it comes to that. I told him I had found and NS just in case it comes to that and wanted his opinion on him and he said he wasn’t going to help me because I obviously already have my mind made up! Ugh. Very frustrating.
that sucks. Sounds like you and your pcp aren’t on the same page. Could you find another? If not just based on the chiari issue based on the fact that he clearly doesn’t respect your feelings/concerns.
I am definitely considering that now.
YOU need to think about you and not about your pcp. He clearly seems threatened by what he doesn’t know. Any doctor worth their salt will pass on a specialty issue to a specialist. I would be afraid to stay with one who didn’t.
Agreed, Christisue.
I agree with Christisue. I would be finding a different Dr
Nichole,
If you can I would absolutely find another PCP. I spent years thinking my doctor would change and learn more about my condition if she would just listen to me and understand. I tried giving her information,telling her things I read and what other doctors had said, doing exactly what she told me to do so she would know I was a "good patient" Nothing worked and she never changed. There are good doctors out there. They are just far and few between and it takes alot of research, appointments and luck finding them. I don't know if this would work for anybody else but the way I found my new great PCP was I asked my family run pharmacy if they had a list of "good doctors" They gave me 3 and the first one I went to was great after years of looking and being disrespected and dismissed. I know it's really hard but you deserve to find a doctor that will listen to you and help you.
Wendy
Hi...
I too, agree with what the others have said...get a new PCP..also, I was wondering if you needed a referral to the NS you found?? If you don't need a referral then you can just bypass this PCP an get the ball rolling with the NS and get his opinion on your Chiari Dx.
Keep us posted on how things are going..it is so frustrating, isn't it??? We are here for you..
Peace,
Lori
I agree with everybody else on this one :)
If your NS is anything like the couple that I have seen, you should be able to have all your questions/concerns addressed by them personally. You can ask them anything and they should give you their honest opinion... as well as statistics... like what procedure they would like to do and why, how many of them they perform regularly, and what results they can and can't guarantee.
The last NS I saw said he performs about 2 chiari surgeries a month, which is more than most but perhaps not enough to satisfy my insecurity about my situation. On the plus side, his knowledge of Chiari patient outcomes and procedures was very, if not completely up to date, which was very encouraging... even though statistics are still a bit scattered and unclear.
Anyways, best of luck darling<3
Lori, yes my insurance requires approval from my pcp. I have switched to the dr that actually
Ordered the MRI for me. My dr wasn’t available that day so I saw this other dr. I have more all of my records to her.
Thanks Bill. I’m seeing a neurologist, not a neurosurgeon. And I happen to be on my way now. Appointment is at noon.
You guys are the best!! I really appreciate each and every one of you.
Hi..
How did your appt go??? Keep us updated.
Lori
Well, while I was waiting to meet the NL my pcp called asked if we could chat. He apologized for how he treated me on Wednesday and said he did some more research and took another look at my MRI. He said the crowding is worse than he thought and that he spoke with an NS in St Paul who has experience with Chiari and she wants to see me. So I told him to call my NL since I was there at his office. They spoke and looked at my MRI together and agreed that I need to see the surgeon. NL did prescribe something for the headaches. Starts wih a g I think, can’t recall but I’ve seen others on here say they take it. Anyway, another MRI now scheduled for Monday morning then NS is supposed to call Monday afternoon to schedule appt.
Thanks for asking, Lori 
I'm so glad your pcp is changing his tune. It sounds like he may be willing to educate himself and support you through this. I do hope it goes well with the next MRIs and the NS follow up.
Thank you!! Me too.
Wow, what a pleasant surprise! Good luck with everything, and don't go rushing into surgery until you're certain everything is all good... number 1 on that list being the NS and their experience with CM.
<3
Trust me, I am in NO rush!! Lol. Scares the bejeezus outta me!!
That's great to hear! I mean not that it scares you, but that you aren't in a rush ^_^
It's totally natural and rational to be scared of all this, so just keep that in mind if you get anxious.