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Finally diagnosed, but feeling overwhelmed

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and02895
and02895

Hello all - 

I feel like as for a lot of my fellow chiarians, my path to being diagnosed has taken far too long and came with too many misdiagnosises. I am now 23, but have been dealing with my symptoms since I was at least 17. I had my first brain MRI when I was 17 after my maternal grandmother was diagnosed with CM. Basically what I was told was "mildly low-lying cerebral tonsils. Does not fit Chiari criteria". I was devastated. I was having all the symptoms and really felt they had found the answer to them. But I listened to the doctors and was told they were migraines for which they prescribed me a variation of medications for. I saw three different neurosurgeons within the time of then and now, all who brushed my symptoms off. My symptoms have only gotten worse as I've gotten older. It is to the point where I am in so much pain that I can't move, I'm nauseous, I'm always tired, I jumble up words and have trouble remembering what I even did the day before. I'm just miserable. 

BUT, today I saw a chiari specialist who finally sat me down, validated my symptoms and concerns, told me that although a small herniation (only 4mm), it is absolutely a Chiari Malformation and surgery would likely relieve a good majority of my symptoms. 

I almost started crying when the Dr. first said it. I've been waiting for so long for someone with a goddamn medical degree to tell me what I've known for the last 6 years. I could go on for ever on how frustrating it's been, but I'm just going to leave it as that. 

While I am beyond the moon excited for starting this journey to being fixed, the obvious fears and anxieties are weighing heavy on my mind when I think about having decompression surgery. I guess I'm looking to see if any of you guys have suggestions on how you went into having the surgery? Any tips? Anything I should be aware of? Any thing I should avoid? Like I said, i'm extremely excited to hopefully eventually not live with these headaches and overall just miserable feelings, but I would like any and all advise you have for me! 

Thanks in advance!

Jess 

0 likes, 2 replies

2 Replies

  • anthony26436
    anthony26436 and02895

    Posted

    My friend do the decompression surgery! It's gonna be a tough road you'll be in ICU for a few days but the doc will get you up the 2nd day to walk some. You'll be given anti inflammatory medication and Tylenol for pain! Of course the staples will hurt in the back of your head. One thing I'll tell you have someone massage your neck muscle because they will stiffen up and your temple WILL pound!dont work for at least 3-6 months although you will feel good Don't push it!! Good thoughts and gods prayers are with you!

  • Apple62
    Apple62 and02895

    Posted

    Hi,

    I'm happy you finally got a confirmation of your symptoms.  My one question is do you have obstruction of your csf flow?  The

    surgery can be successful for some and only a means of suppressing the progression for others.  I want you to be aware of that.  I wish you the best as you begin your Chiari journey.

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