Syrinx of the spinal cord

ka23mic
ka23mic Online Community Member Posts: 1 Listener
in Rare, invisible, and undiagnosed conditions
Hi I hope someone can help me. I have had neurological symptoms for a number of years. Was referred to see consultant. They suspected I had MS, after one mri I was told I had syrinx from c7 to T3. I had second mri with contrast. I had a call from consultant a few days ago and said he doesn’t think the syrinx will cause an problems. I said what about all the symptoms I have was told that 40-50% of people with neurological symptoms never have a diagnosis. He said if I had any other problems to ask my gp to refer back to him. Is anyone else in this position and I don’t understand why I was told about the syrinx if he doesn’t THINK it was cause any problems. I feel like I’m back to square one. How can they tell from the scan that they don’t think it will cause an problem but reading online says it can cause all sorts of problems. Have I just been fobbed of to get my off the NHS list. 

Comments

  • Sandy_123
    Sandy_123 Scope Member Posts: 62,946 Championing
    Hi @ka23mic welcome to the forum. The only thing I can suggest is that you could get a 2nd opinion from a different consultant, who may look at the scan results again. 
    Or you could wait and see if anything changes then referred back.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    Hello @ka23mic

    Welcome to the community! :) I am so sorry you feel fobbed off by the consultant. I echo Sandy's suggestion to get a second opinion. I'd also speak to your GP about your concerns with the process and how you've read others have had problems later on. They may be able to explain in more detail your situation and hopefully give you some peace of mind.
  • AvocadoNo5
    AvocadoNo5 Online Community Member Posts: 9 Connected
    @ka23mic hi 👋🏼 sorry to hear you’ve been fobbed off by your consultant. I was recently diagnosed with this T2-T10 - and I have a lot of pain from it. Just had my first monitoring mri and am awaiting results. Hope your symptoms aren’t too bad?
  • chiarieds
    chiarieds Online Community Member Posts: 16,760 Championing
    You can have a syrinx that doesn't cause any problems, & one like yours that does. If you watch the first video by Dr Batzdorf from the link I posted the other day, this is helpful in explaining the difference: https://asap.org/conferences/2022-conference/2022-conference-videos/
    Unfortunately I don't think the poster you tagged has been active for a while.

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