Possible chiari malformation type 1

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Can anyone look at my profile picture and tell me if I should bring up possible chiari malformation type 1 to my doctor?

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12 Replies

  • Posted

    Hi your cerible tonsils do look low have you got symptoms?
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    • Posted

      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 
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  • Posted

    I’m no doctor, but it looks like a chiari type 1 to me. I would definitely bring this to the attention of a doctor and have them refer the images to be examined by a neuro surgeon or doctor. They will definitively look at it and take measuremnents. Modern thought is It doesn’t matter how herniated the tonsils are, they can be 1mm or 17mm it doesn’t matter, they can still cause symptoms, and syrinxs can (probably lower chance if they haven’t developed yet, but they certainly can). If u don’t have symptoms you may opt not to have surgery which is probably a good choice and just monitor it and the way you feel day to day.  It is a serious condition, so it’s best to get someone to look at it and it’s best to know you have it as opposed to just forgetting about it and moving on.
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    • Posted

      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 
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    • Posted

      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. 
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    • Posted

      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! 

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  • Posted

    Loren for so far i see you have a chiari malformation. Go to your doctor. Let them take a complete spine mri..and a new brain mri..and a cine mri.
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    • Posted

      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 
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    • Posted

      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. 
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    • Posted

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

      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.
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