Arnold Chiari

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Hello , I had surgery 12 yrs ago and have been experiencing some painful symptoms. For instance when I am active like gardening, cleaning  or exercising , I have severe pain in between my shoulder blades , neck and shoulders. Also when I move around like this and sit down and try to stand up it's so painful. My legs are so stiff and my whole body feels like I got hit by a truck. I do get MRI every year but they keep saying everything is fine with the surgery. I have been experiencing this for the last three years. 

?I was wondering has anyone else felt like this? 

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  • Posted

    Hello Silvia..

    I have also cm1 and have pain between my shoulder blades .. and starting to have heavy/stiff legs.. what kind of pain do you feel between your shoulder blades? I feel some burning pain and my whole back is stiff..

    The only difference is i have not been operated yet..

    Did you had these symptoms also before your operation?? Did they opened your dura and put a patch when you were operated? Did you had a syrinx ? And let them take a cine mri flow study to see if your csf is flowing good..

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    • Posted

      Hello cakal76334,

      I had surgery 12  years ago and I didn't have these symptoms before the surgery. The Dr. did open the dura and put a patch in also he had to shave down one of the disc to make room. A syrinx is was not needed .When I woke up from surgery I felt the difference not this pressure I was feeling all the time . The Neurologist said I could have a normal life but that's not true. As years went on noticed  I can't do a lot of bending over for gardening my head and back will start hurting, and the pain in between my shoulder blade is a burning and stiffness that goes to up to my neck and lower to my ribs. When I am walking for to long my legs and back get stiff and when I finally sit it's very hard to stand up. Also now my ears are starting to ring and getting dizzy and spasm in the back of my head . 

      I know have to go into my primary Dr. soon . I'm going to ask to go to an Arnold Chiari clinic. I'm thinking its time before my movement gets limited. 

      ?I do get MRI every year and they keep saying no change . But something is going on. These feelings are just getting progressively worst. 

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  • Posted

    Hi there,

    I am sorry to hear your condition, just re-iterate to your health care that you need attention perhaps Lumber Punctured, sometime (so what My neurosurgeon told me) after surgery some patients can have another symptom due to generally people with chiari have higher pressure - get your neurologist to measure your pressure average is about 9 - 11 maximum...it could be yours starting getting too high.even though after provided the room (after surgery) plus as a chiari patient..you should not be doing a hard digging (gardening) just like patient with fibromyalgia ..the more they exercise the worse the condition as they should only do a low impact exercises (Yoga, Pilate, tai chi)..so do we..so please try to listen to your body then make sure you go back to your health care professionals and ask them to do THE RIGHT thing..tell them how difficult your quality of life is with this condition...

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    • Posted

      Thank you so much for this advise. I guess we all try to be as normal as possible never thought I should be limited to do what I enjoy. Your absolutely right I need to listen to my body. It just gets so frustrating explaining this to the Neurologist and they don't have a concept what your feeling. They make you take those test touching you nose , walking a line which I know I'm going to pass. I'm just so frustrated have been dealing with this kind of symptoms probably last five years and they put me on an antidepressant which worked took the head spasm away but then it started to affect my mood. So I got off them. I really wish a Neurologists that specialize in Arnold Chiari would read our cases and give us some advise.  

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    • Posted

      Well Sylvia base thing to do is that if you being test again think of on your worst case scenario..you will not be able to do all of those thing..you show them you are struggling doing it...if you are in the UK - QE Hospital in Birmingham or Walton in Liverpool have such an ecellent success rate..I know Mayo is great .I posted once to a girl from US its about an organisation which can help chiari patient to get funding as well as  an idea of referral to the best surgeon
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