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  3. Chiari Malformation

Diagnosed i think

Posted , 3 users are following.

Tufayo
Tufayo

Hello im 53 and doctors believe that i have CM. Its a relief as for the past year i thought i was going crazy, literally. Im a walking poster child for the symptoms, except for 1 thing. They did the CSF flow and it was normal. So with that being said does it matter?

0 likes, 6 replies

6 Replies

  • b2wc97455
    b2wc97455 Tufayo

    Posted

    Hi there,

    Well..irrespectively wether your CSF flow normal, you have got Chiari..and obviously you got symptom..it took me 2 years after disgnosed then its gone horrendously wrong and pain and made me house bound..if that can be managed by medicine then carry on..but if not..do not live it to late..as its getting worst and yo do not like to damage your nerve tissue that connecting with the nerve all over your head...I finally made decision that after decompression my sympton is just gone..got my quality Life Back...but give the Anne Conroy Trust a ring..the nurses there are very helpful...

  • wendy65763
    wendy65763 Tufayo

    Posted

    Hi, I am 55 and was diagnosed with CM 1 in May. I have had symptoms only since Jan. The symptoms came without any accident or injury. I have had 3 MRIs in the last coupe of weeks and have met with a neurologist and a neurosurgeon. My symptoms come and go and are mostly manageable by medication, although some days it's hard to keep going. I am a very active person and it takes a lot to keep me down. I decided not to do the surgery since it only has a 50% success rate and of those success stories many get the symptoms back. I was wondering if you had an accident or injury to trigger yours? I am totally confused why if I have had this all my life why is it showing up now and not when I have had injuries that should have triggered it.

    • b2wc97455
      b2wc97455 wendy65763

      Posted

      Hi tutayo,

      Each individual are the same, I detested the surgery myself, but then..after awhile - I could not stand the pain, the first year of diagnosed was bareable and managed by the medication but then as the time went by..its just got worse, look, if the NS said its 50/50 chance then you need to find a different NS..my NS advised me its 90% chances, of course I was terrified..but then if you think about our life..crossing the road in a busy area giving you 80% chances of getting hit .., driving a car also have a chance of having accident...boiling water..making hot dinner..chances are sometime you have got burnt..what I try to say is..if you think you can live with it and be managed carry on ..but if not..get decompresion, I AM OFF MEDICATION, GOT MY LIFE BACK..I MADE THE RIGHT DECISION.

      Just get 2nd opinion..I will not go to NS who said 50 - 50...see my message above. But GOOD LUCK

    • Tufayo
      Tufayo wendy65763

      Posted

      Hi. I never had an i jury however, ive had fusion of c4 thru c7. Apparently that was due to arthritis. It is questionable if it was 5mm or less. I feel like im the poster child for the symptoms.
    • Tufayo
      Tufayo b2wc97455

      Posted

      You are right as i have no qualitybof life. Afraid to drive cuz my mind gets so cloudy. At times ive forgotten how to do things. I want my life back and im going to get it back. ☺
    • b2wc97455
      b2wc97455 Tufayo

      Posted

      Please get yourself sorted as soon as possible do not leave it too late like me, you ending up damaging your nerve.
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