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Almost 2 years and its only gotten worse.

Posted , 6 users are following.

stuart89372
stuart89372

Hello everyone. I was diagnosed with this condition over a year ago and it just keep getting worse. I was recently at the hospital in January and i was told my condition has got worse. I'm due back in June for a scan and I'm absolutely terrified!

​This has been one of the hardest things I've dealt with. My headaches have gotten more painful and intense, I get nose bleeds and pass out, I feel really sick and dizzy and its now causing problems with my sleep and college work.

I've been given several painkillers over the almost 2 years I've had Chairi but nothing is working.

​Does anyone have any advice on how to cope with the pain or just any advice at all ? I would be very grateful, thank you.

0 likes, 22 replies

22 Replies

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  • wanda72973
    wanda72973 stuart89372

    Posted

    Your a strong person. And I really I'm saddened to hear this because your still trying to accomplish your dreams. Have you had surgery yet?. And before you do make sure that your NS. Is someone that's had a lot of experience with this condition. I will be praying for you and keep your faith and hope strong. Take your time doing anything. And get plenty of rest. I want to exercise but my pains limit me.i just do as much as I can. My NS told me that he would put me on disability but I have yet to receive it. So now I am going through with an attorney. I to am afraid. But I'm also thankful to be alive. You do your best and I'm praying for you.
    • stuart89372
      stuart89372 wanda72973

      Posted

      Thank you so much for your support and prayers. Sadly I haven't had surgery yet but I'm hoping when i go back to hospital in the summer they can sort something. I'm so sorry that things didn't go as planned for you. You would think that in our conditon they would be able to sort things better. I'm really worried for myself but I'm thinking about my mum and girlfriend more than anything. They mean so much to me and it hurts me to see them so worried. I hope everything goes well for you and thank you again for your support it's very much appreciated.
  • rebecca54505
    rebecca54505 stuart89372

    Posted

    The best way to deal with it is to get in with a pain management doctor there they will give you injections. This way you don't have to rely on pain medication to help. If you can get your neurologist to get you in sooner. I had to be hospitalized 3 times before they would redo the scans in which they found that I was 10 × worse than when I found out to the point that I was very close to be put in a wheel chair. It's serious and I would not take no for an answer. Get in and get it taken care of the longer the wait the worse it gets.
    • b2wc97455
      b2wc97455 rebecca54505

      Posted

      Hi rebecca, would you tell us, wht kind of injection is that, is it steroid, epidural or botox and where is the injection be? thanks
  • rebecca54505
    rebecca54505 stuart89372

    Posted

    It's steroid they ask where it hurts the most this last time I had 6 injections put in. But unfortunately only half of them are workin on top of getting a infection in one of the injections which in return put me on more steroids.
  • hayleybell
    hayleybell stuart89372

    Posted

    Hi Stuart, it is HayleyBell again....how are you doing since you first posted?

    I was just reading your original post again and you mention that you are having scans in June. What scans are you having? I assume when you were diagnosed you had an MRI of your brain? Any of your spine at all?

    I would like to stress that if your headaches are in fact the typical valsalva headaches caused by your Chiari malformation like we discussed before, sadly, no pain medication is likely to help much, as they are caused, all be it briefly, by the CSF fluid and the Chiari and pressure at the base of your skull.

    I think it is very unlikely that a pain clinic will inject you with steroids for this type of pain as previously mentioned. I wouldn't want you to be filled with a false hope of a quick injection cure.  I am sure they are kindly trying to help, but your best bet is to make a referral to see a Chiari specialist as soon as you can. You will probably, like many of us, have to find your own and ask your GP or neurologist to do this referral for you.

    let me know how you are getting on..... 

     

    • stuart89372
      stuart89372 hayleybell

      Posted

      Hi Hayley I'm doing a little better thank you.

      ​My headahces haven't been as bad this past week but they are still there every now and again. I started new medication but had to come off it because i took a really bad reaction to it.

      My hospital date has been changed to August now but I was told they plan on doing a spinal scan if i feel comfortable. Which after all the advice on here i do.

      I don't really fancy steroids I'd rather have the scan and then possibly the surgery. Which i have been thinking about a lot and if it's suggested by the hospital i think i'm going to go for it.

      ​Thank you so much for messaging me again i really appreciate it. I hope your doing well too!​

       

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