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  • At my wits end

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    Old 06-21-2008, 09:24 AM   #1
    kcferret
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    Unhappy At my wits end

    So I've been dealing with a myriad of symptoms since last year and in the long road of testing found out that I have a Chiari I malformation of ~6mm. My first 2 neuros said they didn't believe that my issues were being caused by Chiari and treated me for nerve problems using drugs like Amitryptaline, Diazepam, Neurontin, and now Cymbalta. The most relief I have had has been from Diazepam + Ibuprofen but I can't take that at the doses needed for relief for long amounts of time. Some of my symptoms have gotten better which leads me to think that MAYBE it really isn't the Chiari. I've had/have:

    Pressure/pain when bending/straining (had)
    moderate numbness/weakness in hands and feet, mostly hands (had, is mild now)
    tingling/crawling in scalp starting at base of head up and over to top (had)
    fatigue (still have, horribly)
    pain/irritation at base of skull.
    Muscle tension in head/neck/back (have)

    I also have some things that lead me to think it might not be Chiari after all and here is where I would like your opinions. Does anyone else have:

    Cracking/crunching (very audible) of the neck when you tilt your head back and move it. (when I do this it feels like there is a warm "rush" in the base of my skull where the discomfort is, no actual relief though)
    A "pulling" sensation in your back from your neck down into your lower back and legs when you tilt your head forward looking down.

    I also feel kind of like I have restless leg all over my body if that makes sense. It's the best way I can describe it.

    I've had MRIs of my head and C-spine, dozens of blood tests, nerve conduction studies, EKGs and have seen over a dozen docs now I can't even enjoy time with my two small sons because I am so exhausted all the time.

    Any input on those other symptoms would be greatly appreciated. If I am to find a Chiari specialist I will have to travel out of state and before I do that, I want to rule out any other possibilities. Thanks so much all of you and I hope you all find your answers as well.

     
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    Old 08-07-2008, 12:15 PM   #2
    sara127
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    skull cracking

    I feel like my skull is cracking all the time. it can be a clicking, cracking noise to a shattering noise in the base of my skull. Does anyone have these problems too? Please respond fast!

     
    Old 08-15-2008, 12:42 PM   #3
    leanna27
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    Re: skull cracking

    Not all the time but if I need to stretch my neck, which is almost 24/7, I hear some terrible sounds (similar to rice crispies), but also popping, crunching.

     
    Old 08-15-2008, 04:30 PM   #4
    cindys601
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    Re: At my wits end

    Hi~

    I get the crackling and crunching in my neck as well as burning pain. I also feel like I've placed a wet face cloth on my neck. I have cranio cervical instability.

    I'm sure other reasons can cause this but I figured I'd share!!

    Have a great night!!

    Cindy

     
    Old 08-19-2008, 08:00 AM   #5
    emsmomtina
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    Re: At my wits end

    I definitely have the cracking/crunching neck. Any time I move it, my neck pops and cracks.

    I also have the restless body from time to time. My arms feel like they are going numb and I have to move them, rub them, but nothing helps. That's enough to drive you crazy.

    Your symptoms definitely sound chiari-related to me. I was dx 10 years ago with it, and I heard the same thing back then. You need to keep looking for a dr who understands chiari.

    Good luck
    Tina

     
    Old 08-20-2008, 01:50 PM   #6
    nikib0723
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    Re: At my wits end

    Hello, I just joined the group and I have Chiari 10mm. I had the surgery in 2005; but did not get the shunt put in. I sometimes regret that decision. Last year I was diagnosed with degenerative disc disease, tumor on the spine and Vonn Wildebrand's Disease (blood disorder). There are lots of times that I think that a lot of my problems result from the Chiari. My neurosurgeon for the Chiari is wonderful! I moved out of the state but if I ever need a revision I will be flying back to see him. A lot of your symptoms you are having, I deal with too. I am also starting to have memory problems and nocturnal seizures. My stability is getting so bad that I have actually fallen going up stairs (yeah, that was not fun). I hope that this helps! If you have any questions please let me know. I know how hard it is to deal with Chiari.
    Niki

     
    Old 10-27-2008, 06:58 AM   #7
    debby1966
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    Re: skull cracking

    Yes, I definitely had those symptoms. Get to the nearest Chiropractor fast! You'll want to see one that specializes in Atlas Orthogonal which will help clear up your symptoms with no pain. Try it .. I did and it's helped immensely! Good Luck!

     
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