I have just been told I have Chiari malformation 1, I feel really confused about this diagnoses.

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i went into hospital with severe headaches, ct and MRI scan confirmed chiari. I am waiting for a follow up with a neurologist. 

Can anyone give me any info about how this can effect your life and symptoms etc?

thanks

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9 Replies

  • Posted

    Hi I'm sorry you have this diagnosis but least you now know why you have been I pain. I was diagnosed last September and had decompression surgery in November. Everyone's chiari is different we all suffer in different ways. Talk to your Neuro team. There are different options available. Some Neuro surgeons take convincing that the symptoms you have are related to chiari some are on the ball and fully understand. One thing don't give up!

    I needed surgery as I had awful symptoms headaches numbness. I couldn't even laugh without the pain being intense. Now I'm in recovery I have returned to work and just waiting to go to the pain clinic to work on my recovery pains. I'm more than happy to talk more about what your going through as you will find it a lonely place. If your on face book massage me jaquie Clark. I don't bite! I'm here to help anyone going through what we have take care

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    • Posted

      Glad you are out there.  You are younger and going on with your life.  I 

      wish I were a better encourager and still had the physical skills. Educate 

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    • Posted

      I am waiting for a neurology appointment, I'm hoping they say it's fine & I don't need treatment.

      i do suffer from what feels like tension headaches & stiff painful neck. I often feel tired, drained, lethargic and achey. I always just thought it was in my head but maybe it's related. 

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    • Posted

      Your always there for people though iv noticed that. We are all experiencing this awful illness and get through it any way we can. I'm more than happy to link with anyone with this illness via Facebook I know I have met some great people and could not have got through the last 12 months without the support. You are an encouraged apple62 trust me! X

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  • Posted

    Hi Kerrieanne 10572

    First up, your not alone. Others posting here have longer experience of CM.

    My own view on basis of diagnosis only in March 17 is the headaches are the principle issue that is cool to all, but there seems to be a veritable smorgasbord of pernicious symptoms that people may be going through, and none of them give you bragging rights to anything that is considered life enhancing. Many have different symptoms so not going to say anything about yours

    I don't know enough.

    Personally, my experience of the neurologist post diagnosis was v poor. Returned to GP and agreed best option was a neuro surgeon. Two different neuro surgeon visits laterals I have decompression surgery scheduled for 15 days. For me, neurologist was waste of time.

    Unfortunately, surgery does not work for everyone, but appears only option that can resolve most or all issues (please someone correct me if I am wrong) available.

    Read some of the CM posts on this site, and others, and Facebook, even YouTube has people's stories. Get informed, and keep working till you get neuro team experienced in CM to see you.

    Good luck. Get informed. Stay strong. Stay positive

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  • Posted

    Hi Kerrianne

    When I was diagnosed and my neurologist provided me with some medication, but he was really excellent, he said that :'' generally after long term pain management Chiari can't be reversable, the only way to reduce the pressure flow was to have Lumber Punctured.if that not helping then decompression was the only way..but he would not guarantee the result''....and what happened??, I detested the surgery,only when I leave it tooooo long..over 1 year..I started getting worse and worse and also..blacking out and becaming house bound...I have no quality of life, so I then back to him and asked him to refer me to the best NS ever...but I have 2nd opinion as the first NS who would like to opt me has not got enough patients toward a year..in order to choose your NS, I think you should ask him/her..of how many does she/he does per year???, what is the success rate???, if you are in the UK contacting Ann Conroy Trust is important, the nurses there are very helpful..search and learn about your condition through you tube (MAyo Clinic is best) mastered your condition so that when you talk to your health care specialist you have the likewise level with them..that aLso give you credibility so they can appreciate that...dont forget..they very busy..if you note anything how you feel your pain etc..you have a better chance to get the best treatment for them.remember: YOU ARE INCHARGE FOR YOUR OWN HEALTH..NOT THEM.

    If you can..try to be refer to :

    1. Option NO 1 Mr Flint of QE Birmingham

    2. Option no 2 - Tha walton in Liverpool

     

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  • Posted

    I had chiari surgery in 2002 so I'm Sure that its changed. I had brain tonsils that dropped into my spinal cannel. They repaired the malformation.

    It's NOT a fun surgery but You do what you have to in life. Good Luck.

    Any specific details, I will share with you.

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    • Posted

      Hi Jimmycurk,

      WOuld you mind sharing with us..how is your condition after surgery and at present, do yous till have symptom, are you on any medication?

      Thanks

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