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Question on the surgery ?

Posted , 6 users are following.

Chloe2016
Chloe2016

This might be a scary topic for some, including me. I was just recently diagnosed with chiari 1 malformation. And I am very scared. They say the only cure is to get surgery. But is that the best choice ? Now I am getting ready to turn 18 nd I am trying to make it my choice to even get the surgery. I go to see a neurosurgeon on January 5th. And I have so many thing flying through my mind but I just don't know what to ask. If anyone has any suggestions for me that would be great. And I appreciate it so much.

0 likes, 9 replies

9 Replies

  • thestolenolive
    thestolenolive Chloe2016

    Posted

    Surgery is NOT a cure. 

    Surgery is an ATTEMPT to stop progression of this incurable, hereditary, progressive condition.

  • thestolenolive
    thestolenolive Chloe2016

    Posted

    Come to Facebook

    Search SoHelpMyBrainTail in the search box... let us help you.

    They won't let us post links and stuff on this website.

  • helen11122
    helen11122 Chloe2016

    Posted

    Hi chloe, chiari is a condition you can be born with, but also an accident can cause a chiari, as in my case a car accident. Depending on your symptoms and if you can live with them, if not surgery is an option. I had decompression surgery over a yr ago and it has relieved the some of the symptoms, but I still have some issues. I'm 60yrs old but I'm still working partime. My niece has a friend at university has also had surgery and is fine, most of her symptoms almost gone, so it is different for everyone and so is recovery. As said previously surgery is to stop symptoms getting worse, there is no cure for this. Hope you get sorted and ask anything if I can't help I'm sure someone on here will answer your questions as they did me x
    • thestolenolive
      thestolenolive helen11122

      Posted

      accidents don't CAUSE chiari.

      accidents p*ss chiari off.

      The number of people who actually Acquire Chiari is less than 1% of all Chiari cases.... as in it almost never happens.

      The accident would have to be bad enought to change the shape of your skull.

    • thestolenolive
      thestolenolive helen11122

      Posted

      EVERY chiarian needs surgery.  

      There may be extenuating circumstances... other medical conditons {like massive heart valve issues} making surgery impossible... but other than that... 

      Every Chiarian needs surgery.

    • helen11122
      helen11122 thestolenolive

      Posted

      I only know about the accident thing because the neurosurgeon asked if I had any accidents, which I had. But as you say it could have made the chiari worse. Apparently some people have a chiari and don't know about it, till they have problems.
  • b2wc97455
    b2wc97455 Chloe2016

    Posted

    Hi Chloe you have a ffew replied here quite helpful are you in UK?, the tips from \helen is quite useful just what I was going to write..obviously your health care professional will advice you that surgery will be the last option..they try to maintaining it first how ever if that is nat manageable than like other saying operation is to stop the progression to become worse, its look like so many people now getting dignosed CM after being diganosed Fibromyalgia as well. But go to more than just one NS if you can
  • b2wc97455
    b2wc97455 Chloe2016

    Posted

    Hi  chloe..how are you getting on with your NS?, was everything to your ex-ection..hat did she/he say?, are you going to have an OP..if so when? please give us a feed back
  • danb36
    danb36 Chloe2016

    Posted

    Hi Chloe, hope you doing Ok I found out 4 weeks ago I have a type 1 Chairi too. How you feeling?
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