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  3. Chiari Malformation

surely my symptoms count for something?

Posted , 3 users are following.

sophie25633
sophie25633

hey guys im new to this group

I was diagnosed with chiari 2 years ago after finding out I had syrinx. I was so happy to find out I wasn't going crazy because that's how I felt. since finding out I have declined surgery due to being at risk for many things. now I know every surgery has risks etc. but since then my neuro surgeon has refused to help me further and im no longer under a consultant. ive gotten to the point now where I don't know what to do. everything I no about the conditions is through a well known organisation who to be honest have become my rocks and ive met some wonderful friend. recently my symptoms have become worse and its also effecting my mental health terribly. I asked my gp to help and she hasn't, do I keep pushing her for a second opinion or do I leave It as it is and carry on this daily battle..im at my wits end because nobody will listen to me! any advice would be great 

0 likes, 7 replies

7 Replies

  • blackhawks3310
    blackhawks3310 sophie25633

    Posted

    I don’t know what more a neorosurgeon can do for you if your not going to have the surgery. I am thinking that if your already suffering and getting worse, then you might as well risk having he surgery. That’s how I came to decide that I would have the surgery. The symptoms and condition won’t go away or get better on it’s on. It isnt like a cold or infection that your body can fight off and cure. It’s a structural problem that can only be fixed by making more room for everything by having a decompression surgery. There are risks with the surgery and its not a cure, so u still may have symptoms after surgery. My heart goes out to you because I was in the same boat back in March when I finally found out I had chiari and then decided to have the surgery in May. I’m still recovering...
  • annabel42239
    annabel42239 sophie25633

    Posted

    Hi Sophie

    Are you in the UK or US? It's going to be a very different process depending!

    • blackhawks3310
      blackhawks3310 annabel42239

      Posted

      That’s interesting, can u tell us what someone may expect getting treated in US vs UK? 
    • annabel42239
      annabel42239 blackhawks3310

      Posted

      Hi, I'm unsure as don't know US system. In the UK health care is completely free, but sometimes you have to wait weeks for an appt, or a non urgent operation. I guess in US as you are paying, you don't have the same wait times. My son is having to wait 18weeks to see a neuro surgeon, to see if he advises him to have the decompression surgery, however my GP has just written a letter to hurry it on a bit. Cheers, annabel

    • blackhawks3310
      blackhawks3310 annabel42239

      Posted

      Oh that makes sense. Yeah, I’m in the US and have a PPO plan which allows me to see any doctor I want within the plan. I was able to see my neurosurgeon within two days of calling and making an appt and I scheduled my surgery and had it done within 2 months of being diagnosed. Things moved pretty quickly for me here under my plan.
    • annabel42239
      annabel42239 blackhawks3310

      Posted

      Wow, that's fast!  And I have to say I'm very thankful to our good old National Health Service!

    • blackhawks3310
      blackhawks3310 annabel42239

      Posted

      There is definitely a benefit to both systems. It is a scary prospect to not have health care, and it does scare me to think if I ever lost my job I would be screwed so I am not against national health care. 
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