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Just found out I have a chiari malformation

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victoria16373
victoria16373

Hi, I'm 23 and just finishing my final year at university. For the past 8 months I've been battling with my GP over why I've had constant headaches. She put it down to tension headaches and depression however I refused anti depressants the whole time. I've now had a CT and MRI which has shown a chiari malformation and cysts with fluid in the front area of my brain. Im seeing a general medical consultant this Friday, however I'm unsure of what to expect and I'm panicking after reading up about operations that can be done. I'm worried about if to tell companies when I'm applying or to leave it out. Has anyone got any advice from previous experience?

0 likes, 9 replies

9 Replies

  • hayleybell
    hayleybell victoria16373

    Posted

    Hi Victoria

    Really sorry to hear that you are struggling with your symptoms!

    I was diagnosed with chiari 7 years ago and now face the operation next month, it is a relief actually as I am hoping it will get rid of the headaches at the back of my head!

    My advice to you would be to see a neurologist and possibly a neurosurgeon too.

    I am not familiar with people having cysts in the brain with chiari, but all too often people suffer with cysts in the spine called syrinx/ syringomyelia.

    At least you are finally getting to the source of all your symptoms, many chiarians are diagnosed with tension headache, depression etc, I was, if I can help at all, just ask....

    Hails x

    • victoria16373
      victoria16373 hayleybell

      Posted

      Thanks Hayley. I'm just wondering what to expect with a general consultant. I'm on a priority list to see a neurosurgeon but it's a 7 month wait in South wales, so my gp had me admitted to hosp which failed and they sent me home with anti sickness and weak pain relief.

      At the moment I have no real understanding of what is actually wrong as my GP doesn't understand it.

      The only other issue is I'm in the process of moving back to england due to my degree finishing which makes me think I'm going to have to start from scratch with waiting lists

    • hayleybell
      hayleybell victoria16373

      Posted

      Hey....

      I assume the appointment is with a general neurologist consultant on fri?

      From my experience & that of others, you have to take control! My advice would be to see this consultant on fri, write down what the mri results are and what they have to say & recommend as a course of action/treatment. Neurologist will normally ask questions about your health & symptoms you are experiencing, & they should also do a neuro examination ( harmless- finger on the nose, reflexes etc)

      After my many failed attempts with neurologists & different g.p's, when I moved house & also doctors surgery, I did my own research & found a hospital that specialised in neuro conditions, mainly being 'Chiari'. I asked my gp to refer me with mri scan results etc & I was up in Liverpool at the hospital with an appointment to see a neurosurgeon within 4 weeks! The service was amazing! I live 3 hours from Liverpool but they will accept referrals from G.P's or from perhaps this general consultant you see on Friday? That way you won't have to wait so long (I hope) & they specialise in specific neuro conditions.

      Hope this helps.....

      Hails

    • victoria16373
      victoria16373 hayleybell

      Posted

      Thanks hayley it does.

      This consultant is a general medical consultant from the A&E ward. My GP has been pushing for a neurologist to see me. But I live in the South Wales valleys and the hospitals haven't got the doctors who

      Specialise which means I did have a 7 month wait until this general consultant moved me to his list.

      I have a copy of the test results as my GP has printed them off. I'm just not too sure of how much pressure I can put on the consultant without pushing my luck.

      The nearest hospital back home is John Radcliffe in Oxford.

    • hayleybell
      hayleybell victoria16373

      Posted

      Have a chat with this general consultant first and see what they recommend, your right not to want to push your luck, but remember you have one appointment to get as much info as possible, perhaps write down the questions you want answered and take them with you.

      From all the years I have read about chiari I have seen the John Radcliffe hospital mentioned and from what I remember spoken very highly of.

      Good luck with the appointment & don't be afraid to ask to be referred to

      Another hospital for a consultation, be it the John Radcliffe or The Walton Centre, I am sure you will not offend.

      Good luck, let me know how you get on.

    • victoria16373
      victoria16373 hayleybell

      Posted

      Hi Hayley

      He couldn't really tell me much apart from to put up with the pain and wait. I've got an appointment with a neurosurgeon on the 5th may. So it's just a waiting game. I've fell doe the stairs for the past two days running so I'm just trying to take it easy now

    • hayleybell
      hayleybell victoria16373

      Posted

      I hope you feel better soon, take it easy & with a bit of luck your appointment with the neurosurgeon will be more constructive.

      Take care.......

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