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Recurrence of Chiari malformation

Posted , 60 users are following.

yeltzer
yeltzer

I had decompression 6 years ago for a servere malformation. Recently I have been getting similar symptoms to those I had before my operation . Can a malformation grow again after decompression? I would not like to go through the operation again.

3 likes, 194 replies

194 Replies

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  • DizzyDora
    DizzyDora yeltzer

    Posted

    Sorry meant to say the skull is too small not too big, Duh!!!!
  • darlene50956
    darlene50956 yeltzer

    Posted

    Hi

    I had my decompresion 10yrs ago.   Some symptoms came back over the years .At first my gp said that I was cured. It was in my mind BUT yrs later as in last week he finally admited that  over time with other chiari patients  symptoms have returned. I wish I could have gotten it in writing because depending on his mood if he'll admite it again.  I am so glad to hear it again

    • DizzyDora
      DizzyDora darlene50956

      Posted

      Hi Darlene, I don't know why Doctors insist on telling patients that after Decompression you are cured, I too was told that! Not true!  It makes me really cross, there is still not enough information out there.  At this moment in time there is no cure for Chiari. Once you are found to have Chiari you will always have it, it's classed as a chronic condition. Even cauterising the tonsils will not cure Chiari.
  • darlene50956
    darlene50956 yeltzer

    Posted

    Is there any TV talk shows that will tell the story of Chaira ?    Nothing in Canada lol but maybe the states ?   I know at one time we tryed to get Ophra  what about Dr Phill or Oz ?   The News ?
    • yeltzer
      yeltzer darlene50956

      Posted

      Nothing as far as I know in UK, frustrating as you look alright from the outside but inside. Had an appo[ntment with a physio a few weeks back and he picked up one of the symptoms and wrote to my doctor about it. The Doctor examined me a few days later and could see no trace,nor could another doctor. Their conclusion the physio imagined it. Can only keep hoping for enlightenment. Have you see the video on YouTube from CM enlightenment, sums it up nicely.
  • DizzyDora
    DizzyDora yeltzer

    Posted

    Some parts of the country seem to be worse than others which is really bad, Doctors are getting better in their understanding of CM/SM but far too slowly in my opinion! As regards your doctor and physio not agreeing I would personally be more inclined to believe your physio as that is part of their training. When you say your Doctors do you mean GP's or your Consultant? I'm going to the AGM of the Ann Conroy trust at the weekend. My Flint, who is the leading expert in the country, plus other experts will be there so it should be very informative😊
    • yeltzer
      yeltzer DizzyDora

      Posted

      Mr Flint was my Consultant, good fellow, I meant my GPs. Where is the AGM being held? Everyone says what a good practice my GPs have but as you say they seem to know very little about CM. Perhaps I should bypass the GPs and go straight to Mr. Flint. Problem with CM symptoms can be spasmodic and once GPs get the idea your a hypochondriac as by the time you get an appointment they may have changed, as in the case of the physio, your always a hypochondriac to them I think. This is what happened during the year before being refered I believe. A few years back I remember an article in a newspaper re someone with a CM and coughing.
  • yeltzer
    yeltzer

    Posted

    Once again I went to my doctor with symptoms. Pain in neck terrible, headaches, vertigo causing me to have falls and injure myself and all the other stuff. She informed me that it was very, very rare for CM to occur again after decompression. Your cured!  Sent me away for blood test but and wont see me for at least 3 weeks. I despair.
    • DizzyDora
      DizzyDora yeltzer

      Posted

      Hi Yeltzer,  I feel so desperately sorry, is there any way you could ask to see another do to if you have other doctors in the practice?  Hearing you say this reminds of my latest Neurologist meeting it was disastrous! ! He hardly listened to me, more or less dismissed my list of symptoms. By the time I left the consulting room I was distraught 😢.  When we were down for the AGM,  Mr Flint said that Neurologists don't work on the same page as Neurosurgeons! He said said the majority of N'S don't have much understanding of Chiari! He said Chiari people should only be seen by Neurosurgeons. So what l trying to say is we have to fight for help all the time. Say if a person had MS they would get all the help they needed because Doctors know about MS. Chiari on the other hand doctors don't have an understanding of our condition unless they've taken an interest in it. I agree Mr Flint is a lovely,  lovely man. I so wish I could get to see him, but I live in Cumbria so won't be able to be referred to him. Anyway let me know how you get on, maybe you could get the doctor to refer you back to him. They can't refuse if you request it. Good luck.

    • yeltzer
      yeltzer DizzyDora

      Posted

      My GP at the practice is the supposed "expert" on CM. I'm seriously thinking of changing my GP but how do you find a good one? First off going to request a copy of my notes.
    • brendab
      brendab yeltzer

      Posted

      Please do not believe that. Chiari has no cure. Decompression is just a bandaid. My daughter has had four so far!
  • DizzyDora
    DizzyDora yeltzer

    Posted

    Hi Yeltzer, he doesn't sound that much of an expert! As Regards changing your Doctor if your surgery is a group practice or if you want to go to a different practice is a case of asking around to see which is the best one

    Good idea asking for your notes, I got all mine when I was at the Walton.

    • laura84915
      laura84915 DizzyDora

      Posted

      I had surgery in August.... And I'm thinking it's time for second opinion... My symptoms are back but getting worse.. your opinion?
    • ana50347
      ana50347 laura84915

      Posted

      Yes get a second opinion. Don't settle for everything OK. If your still feeling like hell something is wrong. Research and find yourself a good neurologist that specializes in chiari if u don't have one yet.

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