Just have so many questions...

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I was diagnosed recently with type I after an accident, they said it was an incidental finding... 

I’m wondering if anyone has issues drinking water, spilling it and also just generally neglecting to drink water at all? 

I also, much to my surmised develeped a mean case of sciatica when I was 26, I was in pain for 6 -8 months, it healed on its own... 

I have a lot of issues doing things that I feel are normal routine to other people, 

I can’t for the life of me swallow a pill, I have over the years developed my own technique , I’ve never been able to take a shot of liquor either. 

I have so many questions , because of the nature of this disorder I find myself wondering constantly if the pain or symptoms I feel are normal. But I guess my most important question is , IS THIS PROGRESSIVE? 

I guess I will find out when I get the results back from the MRI I had last week... and really, besides surgery, is their any real way to get better? 

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4 Replies

  • Posted

    hi,

    I was just recently diagnosed with Chiari Malformation type 1 in january of 2018. I myself have trouble swallowing pills, sometimes even just drinks and food (I am also super clumsy and have bad memory along with a whole list of other things). I 100% agree with you, sometimes daily/routine things seem impossible to do and it can sometimes get super frustrating. Just keep your head up, find a good doctor someone who actually specializes in chiari and make up a file to bring with you. That's what I am doing for my next appointment, bringing a file. make list of questions, list of symptoms (on a scale of 1-10 how bad they are), things you find hard to do that seem like normal daunting tasks, and lists of medications you are currently taking as well the things you may have tried to help relieve symptoms. (for me those include; physical therapy, steroids, prescriptions, injections etc). 

    wish you the best of luck, 

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    • Posted

      Thank you so much for replying,  such a good suggestion because I often feel that if I am not specific enough I just get a simple “that’s normal..” and do you mind if I ask you, Because I don’t take any medications for a Chiari per say although I do take them for something else and I feel that they actually help with Chiari symptoms, but when you say medications do you mind if I ask you what you take them for and also  because I don’t take any medications for Chiari per say although I do take them for something else and I feel that they actually help with Chiari symptoms, but when you say medications do you mind if I ask you what you take them for and also what you know to have had no positive results under a medication?
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    • Posted

      No problem at all!! The doctors had put me on the methadone pack (steroid) and I couldn't physically stomach it, it made me absolutely sick to my stomach. They then put me on prednisone (another steroid) it did not work at all and caused some very strange side effects, when I brought it up to the doctor she had no idea what I was talking about and actually said that she could put me on another steroid to reverse the side effects but it would cause more. I became very frustrated, so she took me off all steroids and put me on zoloft (antidepressant) she said that it would help with headaches, It did not help either, so she decided to add another antidepressant (nortriptlyne) I argued that there was no point in being on two of the same thing at the same time so she just put me on the nortriptlyne, again it was another lost cause. The last medicine I was on was called rizatriptan, it helped with headaches just dulling them down a bit but did not help with anything else. I haven't had very much luck with prescriptions however, some people have successful results with them, it just depends on the person. 

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    • Posted

      I understand your frustration... thank so much for sharing with me, honestly my story is a little different although I’m starting to see chiari is unique for each person..  I have very little faith her the healthcare system here and I just recently got really really good insurance my opinion is obviously still the same  : )  only one doctor around Here who can see me for this, do you feel that for you it has gotten worse with time?
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