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

Second opinion

Posted , 5 users are following.

ashley09624
ashley09624

I just got home from my neurologist. He would not diagnose me with chiari because the tonsils descend less than 5 mm even though I am having all the symptoms and they are worsening daily and this runs in my family. I am set up for a second opinion and hoping to actually get some help and relief soon.

0 likes, 7 replies

7 Replies

  • jessfl86
    jessfl86 ashley09624

    Posted

    Hello ashley09624, you most definitely have Chiari. You need to see a neurosurgeon. Not a neurologist. Surgery is the only relief.
    • ashley09624
      ashley09624 jessfl86

      Posted

      I am thankfully set up with a group that specializes in chiari. Meanwhile I have not had feeling in three of the fingers in my left hand since the 4th of july. Needless to say I left my appointment very upset this morning
  • Apple62
    Apple62 ashley09624

    Posted

    Go to neurosurgeon. My neurologists were

    Never much good except one that finally

    Found the Chiari.

  • ashley09624
    ashley09624

    Posted

    Being in the US I have to have a referral to a neurosurgeon and can't get that without the neurologist first giving me a diagnosis so I am stuck up a creek without a paddle right now. I have never been more frustrated in my life

  • b2wc97455
    b2wc97455 ashley09624

    Posted

    Hi Ashley, it does not matter whether you are 1 or 100 mm, if you have symptom then you need to get the treatment whether its manageable by medicine or by decompression, go back to you GP (Doctor) get them to refer you to different nour neurologist..when you find the neurologist..explain it to him you would like to get the surgery as soon as possible  and get referr to Neuro Surgeon as this is effecting your Quality Of Life..if he refuse ask them to put in writing..then put a complaint to NHS (if you ar in the UK) I am not sure where in other country...but follow that up..let ybe assertive..if need be go to A&E..do not leave it..I promise you..I WAS GETTING WORSE AS I DELAYING THE SURGERY...!!!!!!!

    i HAVE my life back now..I wish..I took decision the soonest I know it was CM..then I would not be suffereed that long period of time..take it easy in the meantime, listen to your body...drink plenty of liquid..take supplements such as: magnesium, selenium...and also if you can take any supplement drived from vine leaf (grapes) that used to help me a lot,, because I suffered horrendously, I felt that I would ended my life..I could not believe that the minute I have surgery..all that pain just disappeared..but my recovery was quite hars becuase I think I must had damaged my nerve living it toooooo looong..getting good Reflexology also ease the headache..I think you  should not go to any chiro or oesteopathic. SO..be firm to your health care professional but ask them to help you..you have to understand if do not express how you feel, they treating you just others..they are busy and see lots of patients..you are only number if you do not assertive..BUT AFTER SURGERY...LIFE IS BACK...

  • Evella4
    Evella4 ashley09624

    Posted

    Hello all,

    It's been a while since I have responded to this forum. I've been living a nightmare. Been to 6 Neurologists and 2 Neurosurgeons that specialize in Chiari Malformation. My brainstem tonsils are herniated at 6.8mm. I never had symptoms until last year and it began at work. I am a HR Officer and one day I was casually having a conversation with my coworkers and started having stroke like symptoms. I was rushed to the ER and at the emergency hospital I had a seizure/ body spasm and they quickly gave me anti seizure shot. I've had every test done. It's been exhausting! My spine was jabbed twice! Checked for every type of Neurological disease. I was even having seizures that lasted 20 minutes and they were very painful which knocked me out completely. I went through their Epilepsy testing and it was determined that I did not have Epilepsy. Which I was angry that these doctors put me on Epilepsy medication first before conducting an Epilepsy test! Why I didn't have the Chiari decompression surgery yet...well because both Neurosurgeons were honest and said that they can't guarantee that it will be a success and don't know if in fact if my CHIARI is causing all the problems or if it's a atypical migraine. I was told that the toperpaite/topomax could be cause the numbness and tingling in my feet and hands. It's a side affect. It also causes stiffness. So right now I'm trying to wean off the medication to determine if it's the drug. If it's not the drug and I'm still having all these symptoms then I'm going to have surgery. It's going to be a year and I'm housebound. I can't continue this another year.

    • Apple62
      Apple62 Evella4

      Posted

      I started having BP and anxiety issues in 2008. Had all the heart tests up to a cath. All fine. Had a neck fusion in 2013 continued to have weird symptoms. Had to leave my Risk Management job I loved. Decompression in 2014. Been in Asst living since 2015. Still walking in horrible pain all over my entire body.
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.