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MRI question and desperate for some help

Posted , 4 users are following.

debbie42908
debbie42908

Hi, I'm really hoping I can get advice. An ENT referral 12 months ago for balance problems led to an MRI of my brain and the report said I had Tonsillar Ectopia at the Foramen Magnum. No ENT cause was found. While I was waiting I deteriorated and was very dizzy and had difficulties speaking and coordinating my mouth to swallow properly. I also had recurring shoulder pain making using my arms away from my body very difficult. That led to an Orthopaedic referral. after a 12 week wait the outcome was I may have pinched nerves I was given 3 pages of exercises and told if any hurt don't do them. Meanwhile I was seen by a neurologist who agreed to do full spine MRIs. I had cervical and thoracic scans Jan 12th. On top of all of this I v had an occipital headaache and low back pain for about 13 years. The headache wakes me up every night after about 2 or 3 hours sleep. The lower back pain feels like my head, very localised not like I imagine nerve pain.

My question is, does full spine not have to include Lumbar and Sacral?? I have battled to get another appointment with neurologist on 9th march, but received a letter yesterday that said Cervical and Thoracic results are normal, no syrinx and the Tonsillar Ectopia IS NOT a Chiari Malformation, and definitely isn't causing my symptoms.

I have done DPA access request so have my brain scan on a disc. It looks like a Chiari to me, also on the Coronal back view both tonsils are outside my skull and squashed, but the right one is lower. All the head ear pain is worse on the right. Like everyone on here I am just trying to work absolutely fed up of feeling like this and with no joined up medicine. Now waiting for another ortho referral about my lower back, they couldnt discuss it at the shoulder appointment, needed to start again via Go.

ook low and squashed

0 likes, 15 replies

15 Replies

  • hayleybell
    hayleybell debbie42908

    Posted

    Hi Debbie

    It sounds like you are having a really hard time of it!

    I was diagnosed with chiari about 7 years ago and I also suffer with horrific lower back problems.

    Your correct that an mri of your spine should include your lumbar and sacral regions. 

    My advice to you would be to see your g.p and demand a lumbar & sacral mri be done. If the results show there is a problem your g.p should refer you to a specialist.

    In saying that, I have had a nightmare with different neurologists & g.p's. I now have a good doctor that has referred me to see a neurosurgeon that specialises in chiari malformations and I am hoping he will be able to shed some light on my lumbar spine problems too (as neurosurgeons cover the spine as well as the brain.)

    I actually travel to Liverpool to see him tommorrow, it has been a mission & I have no idea what the outcome will be, but he is very familiar with Chiari malformations & I hope he will take me more seriously then the neurologists I have seen that blame everything on migraine & stress.........

    You did mention your headaches wake you up from your sleep...... this needs looking into quite seriously, I had this too for quite some time and it is not nice! Keep nagging at your neurologist/doctor.......see someone else if needs be for a second opinion, but rest assured that your brain mri was clear.

    Good luck to you & I hope you get sorted soon cool

     

  • debbie42908
    debbie42908

    Posted

    Thank you so much for taking time to reply, how have you got on at Liverpool? Really hope it went well
    • hayleybell
      hayleybell debbie42908

      Posted

      Thanks for your response.... My neurosurgeon has recommended surgery. I go back again this week to discuss it in detail now that I have had a good think about it all.

      I am armed with questions & have got my head around the thought of surgery! (Pardon the pun)

      How are you getting on?

  • debbie42908
    debbie42908

    Posted

    Oh wow Hayley so pleased for you ... Well you know what I mean, were they good? I am being referred there and am so nervous that they will just dismiss me like Manchester has. Where do you live will your family need to stay there? Good luck if you go in before reading this x
    • hayleybell
      hayleybell debbie42908

      Posted

      I live a 3 hour drive away from Liverpool! A long way but to be honest it is worth it, the hospital has been amazing, very quick referral.

      I have been told for the past 7 years that my symptoms were all just migraine and stress, for once I am finally being listened too, my symptoms are text book chiari!......

      I have 3 kids so just my husband will be accompanying me for the op. Not sure where he will be staying.....least of my worries lol....let me know how you get on, I am waiting for the date of my op, got my pre op mri at the end of the month.

      How are you doing?

  • debbie42908
    debbie42908

    Posted

    I am struggling, work is so hard and my swallowing speaking and writing is getting more difficult. Dizzyness is worst after I get up, I took my bp as I had. Bad palpitations it was 90/40 and pulse 100 then half an hour later it was 170/87 pulse 130, I have a leaking aortic valve so it scares me. 24hour monitor was OK and cardiologist isn't worried. Meanwhile head is the same ears the same. The Manchester neurologist that I asked to see to discuss his decision to watch and wait, didn't see me , I was seen by one of his team who didn't have my scan or notes and apologised for being unable to answer any of my questions. He wrote to 1st one asking him to arrange an urgent appointment, that was 9th march. Yesterday I got a routine appointment on 4th may . so my Gp has done a referral to Liverpool. I'm hoping that its a neurosurgeon, or that their neurologists are better informed,
  • debbie42908
    debbie42908

    Posted

    I am struggling, work is so hard and my swallowing speaking and writing is getting more difficult. Dizzyness is worst after I get up, I took my bp as I had. Bad palpitations it was 90/40 and pulse 100 then half an hour later it was 170/87 pulse 130, I have a leaking aortic valve so it scares me. 24hour monitor was OK and cardiologist isn't worried. Meanwhile head is the same ears the same. The Manchester neurologist that I asked to see to discuss his decision to watch and wait, didn't see me , I was seen by one of his team who didn't have my scan or notes and apologised for being unable to answer any of my questions. He wrote to 1st one asking him to arrange an urgent appointment, that was 9th march. Yesterday I got a routine appointment on 4th may . so my Gp has done a referral to Liverpool. I'm hoping that its a neurosurgeon, or that their neurologists are better informed,
    • MarieChiari
      MarieChiari debbie42908

      Posted

      Hi Debbie

      I live in the states

      I happened along this site while searching for help regarding my chiari

      I wanted to contact you because I understand what you are going through as I am too

      Our situation is not an easy one and can leave us lonely frustrated and worried

      We need all the support we can get from each other

    • MarieChiari
      MarieChiari

      Posted

      I too have tachycardia and it is frightening when I have it, it causes changes in my blood pressure...... I have learned over the last 6 months that my symptoms are text book chiari as well.....it has taken me 9 months to put the pieces of the puzzle together to understand why I've been so sick.....Now I am trying to find help.....
    • hayleybell
      hayleybell debbie42908

      Posted

      My referral to Liverpool from my gp Was very quick & efficient. I hope you get the help you need from There and wish you all the best, let me know how you get on. Until then, take care.....
  • Keko
    Keko debbie42908

    Posted

    Tonsillar Ectopia immediately tells ME Chiari. But in thinking about it, it could be caused by Hydrocephelus, not Chiari. 

    Either way, it sounds to me like CM.

    My advice is to send a copy of your images to a chiari specialist. There are a few who will look at them for you for little or no charge. You are being shuffled around through the endless list of specializing doctors...who more than likely have never heard of or really know what Chiari is.

  • debbie42908
    debbie42908

    Posted

    Thankyou Marie, Keko and Hayley. I am still waiting for my Liverpool appointment. I am off sick again because of symptoms, and getting quite depressed. Im at a point where I dont want to talk about it to anyone.

    All the best with your surgery Hayley, hope everything goes to plan and you have a speedy recovery.

    • hayleybell
      hayleybell debbie42908

      Posted

      I am sorry to hear that Debbie.

      I am sure your appointment will be sent to you soon. They were very good with me.

      I had a touch of bad luck with it all recently. I was on my way to Liverpool last week for my pre op appointment when I was in a car accident. An HGV tanker lorry ran into the back of me 15 minutes away from the walton centre.

      I was cut out of my car. Really traumatic. I have no break to the neck thank goodness, but obviously I am in terrible pain, my right hand is weak & numb ever since the impact & obviously I have a horrific whiplash injury.....plus other things, but I won't go on!

      The shock has been terrible as you can imagine & a real set back.

      I now await MRI results to ensure I have no further progression of chiari.

      Not a great start to my preparing for my op! I will have to wait to see if I am able to have the surgery all over again!

      Anyway.....I wish you well & be reassured, Liverpool have been great with me & I am sure they will be in touch soon.

      Take care......

      Hails x

  • debbie42908
    debbie42908

    Posted

    Oh no!!   Im so sorry to hear that, what an awful trauma for you. I reallly hope it hasnt worsened your Chiari and that your injuries heal quickly. :-(  

    ( feel free to private message me if you want )

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