2nd opinion help

Posted , 4 users are following.

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


0 likes, 7 replies

Report / Delete

7 Replies

  • 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


    Report / Delete Reply
    • 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? 


      Report / Delete Reply
    • 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!

      Report / Delete Reply
  • 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.

    Report / Delete Reply
  • 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!


    Report / Delete Reply
    • 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

      Report / Delete Reply
  • 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 .


    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up