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2nd opinion help

Posted , 4 users are following.

carolyn68596
carolyn68596

Hello all,

I saw a neurologist in January after suffering from vertigo since November 2015. An MRI was ordered which showed 'low lying cerebellar tonsils, 5-6mm below the Foramen Magnum.' I was told by my neurologist that this was normal and not causing my vertigo. No one has actually mentioned Chiari to me at all.

Since then ive seen a Neuro-otologist for vestibular testing. All my results came back normal so i know have a tentative diagnosis of Migraine Associated Vertigo (without headaches.)

Im wondering whether the herniation could actually be causing all of this despite being told by a neurologist, my GP and a neuro otologist that it definitely is not.

I have my mri on cd and would like a second opinion. Does anyone know where I can send my mri cd to be re-evaluated?

Thank you

Carolyn

0 likes, 7 replies

7 Replies

  • alana17881
    alana17881 carolyn68596

    Posted

    Hi Carolyn, 

    When you say vertigo - is the room spinning around you or are you lightheaded? I have been suffering with lightheadedness for approx. 51/2 years now. I could not get a diagnoses from any specialist. A neurologist told me when this all first started that I had migraine without the pain. I did not take her medication as I knew it was not this. I have searched for years and have recently been diagnosed with CM1. My scan shows my hernia toon at 5-6mm however my Cine Mri shows them at 7-8mm. 

    I like you you am totally confused and worried about right diagnoses. I have been finally diagnosed and surgery has been stated as what I need but I am unsure. 

    I have tight muscles in led in my neck and shoulders constantly which never changes with physio, osteoporosis or chiro. I have had unsteadiness where I don't feel like I am getting a signal to my legs in time and feel unbalanced but don't walk any differently. If I go for a 30minute walk I get really bad pressure in my head, dizzy and feel terrible. I also have floaters/dots in my vision that never go. 

    Do do you have any other symptoms? I am unsure as to whether bad posture and computer work continually does this to me or if it is in fact the Chiari. I don't suffer headaches, drop attacks or any of the other problems that members mention. Only headaches when the lightheadedness gets bad.

    I don't know if this helps but keep searching for doctors or a Chiari specialist. Find someone who will listen to you.

    Kind regards

    Alana

    • hayleybell
      hayleybell alana17881

      Posted

      Hi Alana - I am jumping in here after reading your post! Hope you don't mind.....

      you mentioned pain in your neck & shoulders, have you had an MRI of your spine to rule out syrinx?

      i agree, computers are not great for us for too long! It often makes my eyes go funny!

      Try to avoid having any manipulation done by a chiropractor, I was advised it is a no-no for Chiari patients. Did your spinal MRI come back clear?

      I am almost a year post op & would like to be of help if I can? 

       

    • alana17881
      alana17881 hayleybell

      Posted

      Hi Hayley,

      i dont have syrinx in my spine which is great. I don't see chiropractors anymore. I used to years ago but only have light physio now. I worry about posture but seems extreme for this to last for so many years. I don't get headache from sneezing or anything like that. Sometimes I think talking can set off my lightheadedness too. So hard to get a clear answer!

  • hayleybell
    hayleybell carolyn68596

    Posted

    Hi Carolyn,

    i was going to ask the same as Alana, is it light headedness or room spinning?

    Dizziness is a symptom of Chiari but do you have any other symptoms.

    I was told I had Chiari 8 years ago. The neurologist told me I had tension headaches & stress migraine & the Chiari was purely an incidental finding.

    my symptoms worsened & again, told it was stress & migraine!

    I persisted, sought a 3rd opinion & am now almost 1 year post op & doing really well. Considering almost all my symptoms are gone, one would assume the 2 neurologist were indeed wrong and it was the Chiari causing all my problems!

    However, in saying that, some people do have Chiari & are symptom free, some have small herniations & suffer terribly. It's a tricky one! The Chiari symptom list is long and varied, no 2 are the same.

  • carolyn68596
    carolyn68596

    Posted

    Hi Alana and Hayley

    Thanks for your replies.

    My dizziness is the room spinning / swaying or me feeling like im spinning. I dont feel lightheaded. I have no other symptoms except floaters.

    Does the spinning nature of my dizziness make it less likely to be chiari related?

    I wish you both well on your journeys!

    Carolyn

    • hayleybell
      hayleybell carolyn68596

      Posted

      Glad to hear you have no other symptoms, if you ever do, seek out a second opinion if needs be.

      Perhaps an ENT specialist can rule out anything else causing this dizziness, can't be nice for you.

      take care now

  • Dizzyjct
    Dizzyjct carolyn68596

    Posted

    Most people seem to recommend The Walton in Liverpool , maybe worth your while giving them a call .It is I believe a specialist neurosurgery hospital . Good Luck .

     

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