I really need help- does this sound like chiari?

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These are my symptoms:

-off-balance feeling. Not necessarily dizzy, but unsteady and "off"

-very weird feeling in back of head (base of skull right above neck)

-sharp shooting pains at the back of my head on both sides. Only last about a couple seconds, but will occur over and over again in the same spots.

-eye pain. Feels like the tops of my eyes hurt. Hurts to move my eyes in any direction. Kind of feels like a strain.

-sharp shooting pains in ears (on and off)

-mild headaches. on and off.

-pulsatile tinnitis.

-occasional ear fullness in one ear.

-head fills with pressure when i bend forward, cough too hard, or sometimes even with little movements like turning over in bed.

-face randomly gets hot. 

-temple pain

-fatigue

-hearing my heartbeat in the back of my head (not my ears) accompanied by pulsing/throbbing when this happens. Usually aftermovement (like turning over in bed). 

These are my symptoms and I'm extremely worried. This has been ongoing and progressive for 2 months now, and it all started after I took a couple pills of accutane (not sure about definitive link). I also have a neurological disorder called visual snow. I know I need an MRI to be sure, but I'll take any input I can get at the moment. 

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9 Replies

  • Posted

    Hello Aman,

    First I am sorry you are having these symptoms. My advice to you is to see a doctor and have a diagnosis confirmed. An MRI of the Brain will confirm Chiari Malformation. The only reason why a MRI was taken of my brain was because I thought I was having a stroke. Please talk to your doctor and and explain your symptoms.

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    • Posted

      Thank you for your comment smile

      I've been talking to my doctor about my symptoms and he seems to brush it offf as migraines or vertigo. I had a CT scan and it came up clear. This definitely does not feel like a migraine or vertigo, it's hard to get a doctor to take me seriously. I'm thinking it's either intracranial pressure or chiari

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    • Posted

      CT scan won't necessarily catch it. Request an MRI. Be really pushy. IF your doctor won't cooperate, go to a different doctor. Usually they are happy to spend your insurance's money. If you can't get a satisfactory response, go ABOVE your doctor's head. Ask for the Manager of all the Doctors. Good Luck!!

       

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    • Posted

      Thank you for the advice! I will definitely be pushier this time until I get answers. Do I specifically ask to be checked for chiari, or are they likely to find it on their own?
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    • Posted

      Aman,

      I don't know if it would be a good good idea to ask your doctor to check for a Chiari. You can just inform your doctor you are having a lot of symptoms and that you think you shouldn't get and MRI done of your brain to rule out any diseases. I didn't know anything about Chiari until my doctor received the results of my MRI and I didnt just have Chiari, I have other issues with my brain as well. This is all the advice I can give you to get started and I really think you need to address your symptoms with a doctor or be referred to a nephrologist. Hang in there. It's going to take time and lots of patience.

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    • Posted

      Okay I'll keep that in mind, the only reason why I wanted to ask my doctor to check for chiari is because I heard sometimes things can be missed in MRI's and CT's scans. sad I also talked to a neurologist and he referred me to get a lumber puncture to rule out some things but I hear that can be dangerous if I have chiari. Thanks for the input <3 

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    • Posted

      I feel you. My chiari was missed on 2 MRIs and it was only when I had the contrast MRI that it was picked up.

      I have had a lumbar puncture post diagnosis, after it was decided that my chiari was not causing any instructions.

      Speak to the neurologist about your concerns. They are valid points!

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    • Posted

      If you have it, it should show up on an MRI. MRI's aren't totally accurate re: the length of the tonsils and FYI: there are two tonsils, one on the each side. The first Neurosurgeon I saw never mentioned that. My first MRI showed a 7cm tonsil and a later Cervical MRI said it was 4-5. Found out after my CINE MRI that I have two- one was 8 cm and other was 4-5. CSF flow was blocked on the side where the tonsil was longer. When the canal is blocked, the tonsil keeps getting hammered as fluid keeps pulsing trying to get through.

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