Possible chiari malformation type 1

I do I have almost all the associated symptoms but my main concern is my head pains they are  excruciating! I get them from just about everything I do. Thank you for replying 

Yea I made this mri don’t in August of 2017 but my symptoms are worsening and my head pain is bringing me to a dark place. I will definitely have my doctor take a look. Thank you for your advice 

Wow lol I meant “I had this mri in August 2017.”

Yes, I know what u mean about the head aches beating u emotionally down. It’s draining for sure. If u had this MRI since August of 17 and they didn’t say anything about a chiari, I would be pretty p****d because to me it looks like a chiari (again, I am no doctor, and I could certainly be wrong, but it looks like ur lower tonsils are past ur foramen magnum and compressing ur spine). I wouldn’t wait any longer, go in immediately and ask about it. Then if it’s confirmed I have it, it’s bitter sweet. It’s bitter sweet because u will have a proper diagnosis but then you have to figure out how you want to deal with it. (although u could have more than just a chiari going on...I thought my problems were tmj related before I had an MRI showing the chiari...I opted to have the surgery and I hope that everything goes away including my neck and facial/jaw pain, but it’s certainly possible for me to have chiari and TMj disorders at the same time). Luckily, it’s a condition in which there are options That can make it better or eliminate it al together for some patients. I will keep in touch with u about my progress and let us know how it goes for u once u start talking to the docs. You’re not alone in this, 2 months ago I never heard of this condition until I was diagnosed with it, and now I find lots of help on this forum. 

Yea I am really p****d lol I’m also scared then I’m hopeful idk I have a lot of emotions right now. My Nero said I have pots but I don’t believe that. I will definitely be keeping up to date on here, if I do have CM1 and get the right meds/surgery I’ll be looking forward to laughing again 😭 along with just being myself! I wish you all the luck in the world, I really appreciate all your words! I’ll be seeing my pcm on Tuesday so I’m sure I’ll be posting soon! 

Okay thank you I’m going to wright that down. I hope this will be an answer after over a year in pain! Thanks again 

I totally agree with Cakal76334’s suggested tests, especially the CINE flow mri study. It shows if you have a spinal fluid (CSF) bloackage. Even my doctor didn’t order that test for me until I suggested it, and it showed I had a blockage. I am not sure if he was going to order it or not, but I almost think he wasn’t going to. So, be your own advocate and I highly suggest reading as much as you can about the condition, symptoms, options, outcomes, etc. I literally became super educated on the condition within a month, to the point that I was able to have good conversations and questions for the doctors and make suggestions or demands to my doctors for my own health. Plus you will have a lot of friends and relatives who will have no clue what a chiari malformation is and what the surgery is all about. I would say 90% of the people I have met had no clue about it and needed me to explain everything. 

What kind of symptoms/pain do you have ? Was it progressive build up your symptoms ? Do you have problems with your back ? (just curious)

SO I started having back problems in 2011 after I had my second child and have had issues with pinched nerves in my lower back but I started having extremely painful stabbing in my head and a lot of neck pain then it progressed into shoulders and collar bone pain, I have periods of nausea and dizziness. Also random stabbing pains throughout my body and fatigue. I have another mri scheduled for June 5th, I’m dealing with military doctors so we shall see how they help me when I highly doubt they know much about Chiari Malformation. Ill keep updated as much as I can.