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    Chiari Malformation

    I was just reviewing last year's MRI in preparation to review this year's when I saw that I had been diagnosed with Chiari Malformation. Since that's Greek to me, I looked it up online and after being horrified I found some info on a possible relationship between CCVII (or whatever those initials are), Chiari, and MS.

    I think this may be a long shot but does anyone in here have any knowledge/experience with this?

    I am a little freaked out since I already have cervical and lumbar stenosis so it would seem that my spotted brain is falling out of my head and being squeezed by my spinal cord? I see my neuro on Nov 19 but would love some input before then.
    Newbie

    #2
    I had this

    I was given this diagnosis along with my original MS diagnosis.

    It did not bother me for about 6 months. In fact I was not told originally when I was diagnosed. I talked to my neuro at my 6 month check up, about a different kind of numbness in my right arm, not like my original numbness and said I was going to see a neuro surgeon for my herniated disks in my cervical area.

    I saw neuro surgeon and he told me about the Chiari malformaion. I basically was just starting to have some symptoms from it. He was more concerned about that then the disks. He did a blood flow MRI to see the blood flow if that area to see if there was some tissue death.

    I was not ready to have surgery right then, even though I knew that I would have to have it soon. As I got closer to the time that I scheduled surgery, I could not turn my head without it giving me major dizziness. Just scooting back or forward to fast in a chair would cause me issues also.

    Surgery, piece of cake for me, but have had experience of surgery before. It is just scary because the surgery consent I had to initial at the complication of death. I knew this, but to initial that on the consent just kind of really hit me.
    God Bless and have a good day, Mary

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      #3
      I cant tell you how shocked I am that you responded to this! Just when you think you have the weirdest thing in the room...

      My neuro didn't tell me at all a year ago when it first appeared on my MRI. I am a little peeved about that and pretty scared about the possible outcomes. Can I ask if you had the plate put in? Vertebrae removed or shaved down? How was your surgery and recovery?
      Newbie

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        #4
        piece of cake

        As I said earlier, the surgery and recovery was a piece of cake. But, I have had surgeries before, I am a nurse, and I at the time could do 12 laps around the nursing unit every hour. I was/am a very active person. I do water aerobics.

        I did not have a plate put in, but a graft/mesh. There also was no shaving of the bone either. A night in neuro ICU, for monitoring purposes only. The neuro surgeon got me out of there ASAP the next day because I definately did not need to be back there.

        As soon as I was transfered to the regular neuro unit, I did the twelve laps around the nursing unit every hour and spent one more night in the hospital. I went home on a lower dose of pain med then the normal. But, I am a not a pain pill taker even today.

        I too did not know about the Chiari until 8 months after MS diagnosis. And, the neuro surgeon told me, not the neuro. I don't know why, but that didn't bother me. Probably because it was not causing me any symptoms.

        I would strongly recommend being careful about what you read regarding it. Talk to a neuro surgeon and go from there. One step at a time.
        God Bless and have a good day, Mary

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          #5
          It's good to hear some positive feedback- thanks! You are right about watching what I read. I will see my neuro and go, conservatively, from there. Thanks again.
          Newbie

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            #6
            wow

            I can't believe I found this thread in a search for 'shaving' (having troubles there )

            I have received five MRI reports over the years that all showed chiari malformation - I also have moderate to severe stenosis in my cervical spine.

            I had been having issues for 12 years prior to my diagnosis with MS. Strange thing though is that I had no lesions at diagnosis - 6 months later, five lesions, two of which they say were increasing older lesions.

            I had done some research and found many of my symptoms prior to 2012 could very well have been chiari malformation. Add Raynaud's syndrome (rheumatologic) to the mix - I'm just a messed up gal

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              #7
              Crazy! I have this too, although the neuro said it isn't a big deal and isn't causing any issues. I also have cervical stenosis and thoracic herniated disc. And Raynaud's.

              Still undiagnosed with MS, but going to MS specialist when i get my referral from my pcp.

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                #8
                I too have it, they called mine syringomielia syrnix of the spine. They found it when they were looking for lesions on my spine. I also have raynauds in my toes.
                MS.Cure.Believe
                Diagnosed 11-11-12
                Multiple Sclerosis
                Syringomyelia, Syrnix
                Avonex user

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                  #9
                  maybe it comes with time

                  I hope I do not irritate.

                  I have learned to "listen to my body."

                  My body gave me an odd different feeling. I knew that it was time to talk to the neuro surgeon about my Chiari Malformation.

                  Practicing guided imagry and stopping to take the time to listen to your body, is one of the best thing to do. I include this with talking to hand picked doctors. They listen to me and I listen to them.
                  God Bless and have a good day, Mary

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                    #10
                    I wonder how many people are affected by spinal malformations that may have never known before MRIs. Sometimes I feel like the more doctors I go to and the more imaging I have the more things I find wrong with me!
                    Newbie

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                      #11
                      Does any of you have secondary illnesses to chiari? Such as eds, pots, etc? If yes what are they and the symptoms you experience. Thank you!
                      ~Brittan~ Over 15 years w/ symptoms & Recently diagnosed w/ Chiari 1 Malformation - it has a lot of similar symptoms to MS. Easy to dx by MRI. See videos CM info - how to dx via MRI: https://youtu.be/I0f9e3pU6to CM symptoms: https://youtu.be/YyF3HVgHpCs FB group: Chiari Is For Real

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