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Chiari 1 Malformation, neurologist says symptoms not connected..

Posted , 5 users are following.

clarey1
clarey1

I had an MRI 6 weeks ago and was diagnosed with Chiari 1 Malformation with an 8mm descent. My GP had advised that I would most probably need surgery due to the fact that my symptoms had increased - he sent me for the MRI suspecting that I had MS.

However I saw the neurologist today and he says that my symptoms are unrelated and that 'poor neurosurgeons shouldn't be expected to operate on people who don't need surgery'.

Don't get me wrong, I'm not desperate for an operation that's not required, but I felt that he was quite dismissive and I'm more confused and unsure than before I went in.

Has anyone had a similar experience?

1 like, 5 replies

5 Replies

  • yeltzer
    yeltzer clarey1

    Posted

    Was it a neurolgist or a neurosurgeon you saw? If it was a neurologist go back to your GP and tell them you need to see a NEUROSURGEON, two different specalists. I was referred to a neuologist ( more for patients with disorders such as Parkinson's disease, Alzheimer's disease or multiple sclerosis)  to start with who didn't want to know but luckly he refered me to a neuosureon (trained to help patients with head and spine trauma; cerebrovascular disorders, such as aneurysms of the brain and clogged arteries in the neck that can lead to strokes; chronic low back pain; birth defects; brain and spinal tumors; and abnormalities of the peripheral) who treated me straight away. Definitions are simplified.
  • hayleybell
    hayleybell clarey1

    Posted

    Hi Clarey1

    It is an all too familiar story for many people with chiari to be dismissed and symptoms be blamed on "something else".

    I was diagnosed 7 years ago with chiari 1 and after several visits to see neurologists I was left as a "wait & see" although symptoms were blamed on stress and migraine!

    My symptoms have got considerably worse over the years, many more trips to neurologists & mri's done, I finally got so fed up I found myself a chiari specialist.

    I have been advised to have the surgery & actually go into hospital next week for it!

    My advise to you would be to seek out a chiari specialist & discuss your symptoms with them & see what they suggest. A decent neurosurgeon would never recommend surgery if they thought it wasn't going to help you.

    Bare in mind though, The surgery only aims to reduce progression of symptoms along with the pressure headaches. It is major surgery with mixed results. Everyone deals with it differently & recovers differently.

    I shall be back on the forum to let everyone know how I got on!

    If I can help in any other way, let me know.

    Take care

    Hails

  • clarey1
    clarey1

    Posted

    Thank you both so much for taking the time to reply. It was a neurologist that I saw, one who has been brought in from a hospital down in England (I am in Scotland!) To reduce waiting lists by taking weekend clinic appointments.

    I will contact my GP surgery to try and get referred elsewhere as soon as possible.

  • MarieChiari
    MarieChiari clarey1

    Posted

    Hi

    I have a symptomatic chiari 1

    I have found a lot of physicians do not know much about chiari unless they are specialists

    I have had neurologists look at me and say "you don't have any pain" and a pain management MD say I have OCD because I provided him a list of my symptoms wow!!

    I have an appointment with a neurosurgeon who specializes in chiari, took 4 months to get in to see him....good knowledgeable neurosurgeons are in high demand

  • yeltzer
    yeltzer clarey1

    Posted

    It comes down to this people with CM need a Neurosurgeon NOT a neurologist. This comes from Mr, Flint perhaps the top CM specialist in the country.
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