1. Community
  2. Brain and nerves
  3. Chiari Malformation

Any successful stories?

Posted , 4 users are following.

rebecca44806
rebecca44806

Hi everyone! I am a 28 year old female. I was recently diagnosed with Chiari 1 malformation in August of 2017. I've had migraines since 2012 that were stable until about a year ago. My migraines have progressively gotten worse over the last year. It has become so frequent that it is beginning to hinder my ability to function throughout the day. I have severe migraines that nothing seems to ease the pain. I feel like my head is going to explode... And if I attempt to lay me head down the pain increases. I'm vomiting, I have ringing in my ears, I have light sensitivity and much more. Again, this isn't every day, but it's always twice a week. I recently saw a neurosurgeon that highly recommends surgery. Has anyone had a successful outcome from their surgery?

1 like, 11 replies

11 Replies

  • laurbabe19
    laurbabe19 rebecca44806

    Posted

    Hi Rebecca! I’m literally in the same boat minus the bad migraines. I do have ear ringing and a headache that lasts throughout the day. Also when it gets bad, I too cannot lay down as it becomes much more painful. My ears do ring and I do have vertigo / balance issues where I stumble or trip at least once a day. I’m struggling with actually pulling the trigger and saying yes to surgery. He said if it’s something I can deal with then surgery can be prolonged but if these symptoms cannot be managed anymore he would recommend surgery. 
    • rebecca44806
      rebecca44806 laurbabe19

      Posted

      Hiii! My concern with prolonging surgery is that my symptoms will progress and I don't know how much longer I can live with these issues.

  • tahneeee
    tahneeee rebecca44806

    Posted

    Hi Rebecca,

    I'm also a 28 year old female and was diagnosed with a chiari malformation with a 9mm herniation & an extensive syrinx that goes from C1 - t10 in August 2017 aswell. I'm booked in for my operation on 30th November here in Australia. I've read good outcomes and not so good but remember most people who have successful surgery  aren't on a forum telling everyone haha they're living their lives feeling better I guess. What specific surgery have they suggested and do you have a syrinx too? 

    • rebecca44806
      rebecca44806 tahneeee

      Posted

      Hiii. I have a 7mm herniation. I just went for a cervical and thoracic MRI to make sure I don't have syrinx, so I don't have those results yet..... They want to remove a piece of the skill and C1 to alleviate the pressure.

    • tahneeee
      tahneeee rebecca44806

      Posted

      Oh, fingers crossed on the  results of the other scans. My surgeon spoke about symptoms getting worst and causing damage so that's what made me say yes.  My only tip is to do a hit of reading ad get a second opinion if you're not sure. 

    • b2wc97455
      b2wc97455 tahneeee

      Posted

      HI there, its true though, but I am always try to help others, I had excellent surgeon and lucky enough to have my life back now, even though its not 100%, I was advise with chiari - due to defect of our system (very high CSF flow) sometime despite having surgery - some people have it again - (The pressure in higher then the pressure out) hence some have to to have shunt put in...I had surgery about 16 months ago, I must say that I am the lucky one...because I follow the advice from the helath care professional, I dont do lots of heavy carrying...just basically been sensible ..as prior surgery I used to work day and night , carry lots of promotional stuff, flying once a week, in the end I think my body could not cope with the condition i have, now I take it easy..but still enjoying my life, I think the best decision I made was getting that decompress done, I wished that I do it then and straight away after diagnosed, but I was too scare with reading the story from everywhere, but I could not put up anymore..the longer you leave it..the damage your nerve is going to be (that what I heard) now..I can share with any new patient..I will say : GET IT DONE AS SOON AS YOU CAN, EVEN IF THEY DO NOT SUGGEST IT, ASK THEM TO PERFORM DECOMPRESSION STRAIGHT AWAY, BECAUSE ITS ONLY GET WORSE...
  • b2wc97455
    b2wc97455 rebecca44806

    Posted

    Dear rebecca, have surgery as soon as you can, I have it done, iTS THE BEST decision I had ever made, as prior to surgery I was feeling that I should not live on this earth, as I was housebound, pain all over forever, now..I have my life back..2 mths after surgery a bigt harsh, but still better then having that defect..get done if you can
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.