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

I’ve diagnosed myself

Posted , 5 users are following.

loren1988
loren1988

So I went to my doctor and showed him my mri I had in 2017 and pointed out that my cerebellar tonsils looked herniated and so he ordered another mri and come to find out i was at 12mm and now I’m at 18mm so they are sending me to a neurosurgeon!! I hope I can one day be headache free!!!

0 likes, 6 replies

6 Replies

  • ky60054
    ky60054 loren1988

    Posted

    Nobody here in Rockford knows what they are doing when it comes to alot of things especially Arnold Chiari. I had an MRI the end of 2017 because I insisted on it. Apparently mybArnild Chiari has rapidly progressed down to c6/ c7 however there's nothing they will do for me because I've already had 2 Chiari Malformation repairs. I need to find a specialist in either Chicago or Madison, Wisconsin area.

  • michelle_51588
    michelle_51588 loren1988

    Posted

    Really hope you get the help you need.. watching 2 of my kids go threw this kills me so I no ur pain... keep strong and push for what u need xx
  • michelle_51588
    michelle_51588 loren1988

    Posted

    I have a little girl who went threw major surgery her chiari was worst they had seen it took me 6 months going to doctors and opticians. . In the end I stood in the hospital shouted and screamed till they looked at her.. within 2 days she had surgery over and over again to make my baby better.. I nowill found out my baby boy of are family has same condition but not as bad in ther eyes.. but he rolls around the floor with head aches and I will not take he's ok for an answer because I nearly lost my baby girl and will not let this happen again.. keep pushing and don't let doctors fib u off xx

    • steve84688
      steve84688 michelle_51588

      Posted

      Please check out the Institute de Chiari in Barcelona, Spain.  Dr. Salvador has linked a tight filum terminale as the cause of the hindbrain herniation.  I had decompression surgery in the US, which gave me about 4 weeks of false hope, then I had the 45 minute outpatient surgery at the clinic in Barcelona, and now lead a very productive life.  Spent 2-1/2 years in bed, and now raising kids again, church, ebay, renovating a house, etc.  There are 3 doctors in the US that do a similar surgery, but the process can take up to 1 year or more before having the surgery, whereas we were in Spain and  back within 6 weeks of starting the process.  God bless, Steve
  • steve84688
    steve84688 loren1988

    Posted

    Chiari decompression surgery does not get rid of the cause.  I had the decompression surgery here in the states, which gave me abut 4 weeks of false hope, then I had filum terminale dissectum surgery in Spain, which removed the cause.  Browse the Institute Chiari in Barcelona website.  It is a 45 minute outpatient surgery and releases the downward pull of the tonsils, and for me, with some safe inversion therapy was nothing short of a miracle.  I went from living in the bed for 2-1/2 years to now being able to live a very productive life: raising kids, church activities, running household, renovating a home, traveling, etc.  God bless, Steve.
  • b2wc97455
    b2wc97455 loren1988

    Posted

    Hi there,

    So...just make sure you get the understanding Neurosurgeon and have experiences in surgery - I am the happiest person only after surgery - taking me 6 - 8 weeks to gradually got better.

    Good Luck

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.