Chiari one malformation - why my doctor didn't want to tell me!

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hi, i new here and I hope to get some questions answered!

I got an mri done and it stated chiari one malformation, however my doctor didn't tell me that. my report was long, she said I have degenerative disc disease in my neck. ok! she gives me my mri report and I leave.

I get home and Google chiari one malformation, omg. all this time I have been in and out of her office for headache, pressure headache, muscle weakness, forgetfulness, not sleeping at nights, neck and shoulder pain, tingling all over.

so I go back to her and i say what does this say on the top of my mri and what does it mean? she was like yeah, yeah I have another patient who has this and they don't do nothing about it. I said you were not going to tell me? she said don't worry, it's not cancer and you will not die from it.

I was so mad! how dear she, as my family doctor not tell me the findings in my mri report.

I have symptoms...! she will do a mri of your brain and send you to a neurologist.

after this I'm not going back to her... for all this nonsense!

right now I have been having shoulder/neck pain since Feb and it has got worse over the months, + the other symptoms.

I need some advice from all this bc my doctor had no answers! she is fired!

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  • Posted

    That is pretty reprehensile behavior. I would dump her now and go elsewhere. Her is the situation with Doctors: Most of them have no idea what Chiari is. You'll learn more about it here. 

    Chiari I Malformation:   Arnold Chiari Malformation, also known as ACM or CM1, there is a malformation of the hindbrain. The lower part of the cerebellum is referred to as tonsils. The cerebellar tonsils herniate through the base of the skull, otherwise known as the foramen magnum and into the spinal column. In addition the posterior fossa of the skull, or the back, is too small for the brain, and does not allow enough space for the brain. This in turn causes the cerebellar tonsils to be pushed down through the base of the skull, and compressed. As little as 1 millimeter of protrusion by the tonsils has been proven to cause symptoms. Chiari at level zero has also been shown to cause symptoms. When there is compression of the brain stem, involuntary bodily functions such as the beating of your heart, and breathing, cranial nerve compression and a disruption of the flow of the cerebral spinal fluid can all be affected. 

    Treatment: The degree, location and duration of symptoms vary from patient to patient. The degree of herniation does NOT dictate if a patient is a candidate for surgery. In one case small herniation in addition to an associated disorder can cause severe symptoms and surgery may be indicated. In another case a larger herniation with relatively no symptoms may be present, and surgery may not be indicated. Each case is evaluated on a case by case basis. Surgery for Chiari is a brain surgery called decompression surgery. The basis of it is that it makes more room for the spinal fluid to flow. 

    Common Symptom List 

    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

    Numbness in extremities

    Memory loss

    Back pain

    Nausea

    Gag reflex issues

    Neck pain

    "Red Flag" Symptoms 

     The "Red Flag Symptoms" are related to brainstem compression; they generally occur in Chiari cases which are compounded by basilar invagination, basilar impression, retroflexion of the odontoid, and similar disorders. 

    The "Red Flag" Symptoms Are: 

    Severe swallowing problems

    Tachyarrhythmias

    Severe nausea (the kind that makes you waste away below the 90 lbs mark)

    Central sleep apnea

    I had surgery June 2. I saw immediate relief of my symptoms: dizziness, vision, imbalance, memory, speech problems. I had to wrangle with doctors too. I INSISTED on having an MRI in the first place. My neurologist made me go through a ton of tests before we actually got to the one which said "CSF FLOW BLOCKED!" which led to surgery.

    Hang in there and go to a different doctor. 

     

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  • Posted

    Tyra I wouldn't fire her I would remain her patient and seek a lawyer. . Then fire her.!! Obviously she is not in the right field. I don't know what state your in but Google a doctor preferably a neuro who specializes in chiari. This is something not to be taken lightly.

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  • Posted

    While you may not want to sue her, you can certainly post many bad reviews of her on Yelp and other sites!! I posted about my jerk Neuro-opthalmologist- twice. I was FURIOUS!!!  
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  • Posted

    Hi tyra

    Sorry to hear your recent news....

    People will try to reassure you I'm sure, but having been diagnosed with this life changing and debilitating condition as well as having a grotesque sized syrinx in my spinal cord and have Syringomyelea. One thing I will say is that no two patients have exact same symptoms of this illness/disease.

    I am recovering relatively well from my surgery I had in January this year. I still have the pain from the Syringomyelea. The main point of my surgery was to prevent further spinal cord/ nerve damage and reduce syrinx size.

    I would encourage you to keep going back to your doctor to ask for further support or at least be referred to a Nurologist. To give you a clearer picture of your personal situation. This way you are in control to make a decision to have the surgery or not.

    I had a Forumn magnum decompression carried out (surgery) no lying I questioned myself when I came round, 4 days later, I couldn't do anything for myself (sit up, move my head, eat or drink (nothing for at least a week) ora-morph did nothing to hit the intensity of pain I felt.

    However 9 months on, I have good days (low intensity pain) and bad days (I can't get out of bed) but overall I'm better than I was this time last year, my surgery was a success (in reducing the syrinx size).

    So I wish you well, but sadly it sounds like you have to keep fighting to be taken serious by your GP (many GP don't have any understanding about this condition - one of the GP I used to see told me the same thing (I left crying on that occasion , reported him and insisted I only be seen by a certain GP, who is fantastic.)

    I hope my honesty helps a little in preparing you and to answer your question of what is Chiari malformation.

    Take care and keep fighting to get the support you need.

    T X

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    • Posted

      omg, im emotionally feeling better as you no she wasn't any help.

      thank u for your story, as I no its so real. I wish you the best in health and your road of recovery.

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