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I recently been diagnosed with chiari malformation and want to see if anyone else has thesesymtoms

Posted , 4 users are following.

erin_60546
erin_60546

The symtoms have come over the last year starting with the headaches that I have everyday. No medications work. I have what they call panic attacks where I can't breathe and throw up,for hours 2-3 normally. And I have numbness in my arms that was originally thought to be carpel tunnel but had the surgery still get the tingling and numbness feeling at night when I sleep. Also the back of my neck you can't even touch it's so sore.

0 likes, 5 replies

5 Replies

  • Linleel
    Linleel erin_60546

    Posted

    Here is the Common Symptom List:  

    **Numbness in extremities

    **Nausea

    **Neck pain

    Severe Headache and Neck Pain---Most Common

    Dizziness

    Vertigo

    Disequilibrium

    Visual disturbances

    Ringing in the ears

    Difficulty swallowing

    Palpitations

    Sleep apnea

    Muscle weakness

    Impaired fine motor skills

    Pulsatile Tinnitus

    Chronic fatigue

    Painful tingling of the hands and feet

    Scoliosis

    Memory loss

    Back pain

    Gag reflex issues

    If you think about this logically: You have a large brain and the skull is too small. So part of the brain is being pushed against the brain stem and part is being squeezed through the foramen magnum which is the hole in the skull where the spinal cord comes in. If your brain is going through the hole, that displaces fluid..Cerebral Spinal Fluid.  So, since your brain is being squished, that can account for a whole slew of symptoms!! 

    For the Nausea, get some antinausea drugs, like fortran or a scopolomine patch- check with your GP.  The numbness and tingling is from your brain being squished. And the back of your head hurts because of the compression. You could try hydrocodone for the pain, but that would make it impossible to drive. 

    Typically Neurologisist/Neurosurgeons are too busy to prescribe drugs to help. NS's pass off to Neurologists and they recommend various tests to try to see if anything else is causing your symptoms. The thing is- if you have been told that you have Chiari, you probably had an MRI done. So having other tests to explain symptoms is pointless. Many doctors don't understand Chiari and few have experience with it. I've heard a different story from each doctor I've been to. 

    Treatment: typically decompression surgery. Nothing else is going to make the compression of the brain go away. You can take meds for various symptoms, but you have to think about how much more damage can be done with the brain being compressed. 

    You can do a search and find more information about surgery. I would suggest searching for anything titled Chiari Decompression Surgery. There are several sites out there. They describe the surgery.  They also have videos. 

    • erin_60546
      erin_60546 Linleel

      Posted

      Thank you for your response I do have a lot of those other symtoms as well. But the ones above are the main ones that bother me. Now I am starting to feel fullness in my ears and I have always had the vision distorted for many months now. It's almost like the walls and floor float. It's hard to describe. I have an appointment with a neurological optomologist next week and then back to the neurosurgeon in January. I ready to get it over with. Nothing is helping with the symptoms. If I take hydrocdon it keeps me awake and I do take seraquil to help me sleep.

    • Linleel
      Linleel erin_60546

      Posted

      Schedule surgery. I got diagnosed end of Nov 2015. Went thru a ton of tests to see if I had something else and all of those were normal. My neuro-ophthalmologist told me my eyesight was 20/20- which it certainly was not!! (20/60 one eye, 20/40 in other). Then he told me it was "all in my head."

      Finally got a appt with a different NS and had a Cine MRI which showed

      Complete blockage of CSF fluid- had surgery June 2. Mostly all better- eyes were huge improvement.- having some dizziness/balance issues still- probably residual brain damage.

      The "zombie head" feeling is the worst!! I took Hydrodone with Benadryl cause it made me itch. Didn't get any sleep- nod off over my computer.

      Good Luck!!

  • b2wc97455
    b2wc97455 erin_60546

    Posted

    Hi there, I was in your position 2.5 years ago because I refused surgery, but 6 months ago after surgery - I am now having mylife back - DRUG AND PAIN FREE.

    So..pray and hope you get the right NS - you will have your life back.....

  • lora28486
    lora28486 erin_60546

    Posted

    Numbness at night is worse for me to and the meds the Drs. gave me didnt work.I use B complex and magnesium for my headaches and it helped more than the Drs. meds.
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