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Chiari returns??

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Helen9960
Helen9960

I am at a loss! I had Chiari surgery back in 1984, when it was all but unheard of. I have also had several cervical surgeries for stenosis unrelated to the Chiari and had a fusion done with a plate put in. Back in Jan. 2015 I had a Cervical MRI done because of some worsening symptoms. The report said there was a prominent protrusion of the cerebral tonsils of 13-14 mm. and that there was a redemonstration of Chiari malformation; My dr. sends me to neurosurgeon who says there is nothing he could do surgically for me. Is it because he is unfamiliar with Chiari? I am presently going to a pain clinic for a 2nd round of cervical injections to ease the symptoms and some painrelievers. Sent my mri and results to a chiari specialist at the University hospital in Chicago and am waiting a reply. The pain management dr also wants me to see a neurosurgeon he recommends. He said if he can't help this dr will send me to someone who can. I am so frustrated angry and scared all at the same time. I have a loss of balance, can't find words when talking, heavy right leg, pins & Needles across my shoulders, in my face and arms among other symptoms - but the worse are the daily headaches. Sometimes so severe I can't leave the bed. Anyone else have or know of anyone with anything like this? or know of a good neurosurgeon in the chicago area?

0 likes, 5 replies

5 Replies

  • thestolenolive
    thestolenolive Helen9960

    Posted

    Chiari doesn't go anywhere.  Surgery isn't a cure.  

    Come join a group of Chiarians and let us help you.

    Please find our Group on Facebook.... search  SoHelpMyBrainTail in the search box  {they are moderating my comment because I tried to put the direct link in the reply}

    • Helen9960
      Helen9960 thestolenolive

      Posted

      I just requested to be in the SoHelpMyBrainTail group....I knew that Chiari doesn't 'go away'....I was referring to the awful symptoms.  And I am so tired of being 'dismissed'.  That is what happened to me for 14 years until I was diagnosed at age 24 in 1984. It was so rarely seen back then that the doctors recorded my symptoms to use as a teaching too.  It's been 30 years - so I  probably be thankful...however if what you say about the stenosis being related I have had 3 surgeries since - which is one of the reasons no one wants to touch  me.  But I need help.  Today was not a good day as you can tell.  But I toughed out and stayed at work all day...  
    • thestolenolive
      thestolenolive Helen9960

      Posted

      Have you ever seen a geneticist for Ehlers Danlos Syndrome?

      It's a connective tissue disorder that's known to be the cause of Chiari and stenosis and all kinds of spine issues.

      The sad thing is unless they are true Chiari specialists, they don't have a clue that EDS is a must diagnosis and it changes how everything is treated.

      I added you to the group.  

  • thestolenolive
    thestolenolive Helen9960

    Posted

    and the stenosis isn't "unrelated"... it's all connected because of Ehlers Danlos Syndrome.

    And you should NOT be getting any type of epidural type injection

  • christina60471
    christina60471 Helen9960

    Posted

    I'm not sure about the stenosis and the Chiari surgery, but try going gluten free. I had muscle twitching, pins and needles, numbness, and pain in my extremities along with fatigue, achey joints, and a foggy brain. I just couldn't function or think. Yes, I had a heavy painful head that was filled with fog and fatigue.  I was very scared. Long story short, I went gluten free and I've never looked back because I've had relief. The diet has given me my life back with the exception of small infrequent twitches. It takes time to eliminate wheat from your diet and you'll need to cultivate new tastes and learn to cook differently, but it will be well worth it. Instead of taking medicines that give you yet more bad symptoms, try to work on your nutrition. In time, try to eat paleo and eliminate refined sugar.  Honey and maple syrup ok. I feel best on a paleo diet, but I can tolerate potatoes and rice. You will need to test yourself by eating strictly gluten free for a solid 7 day week and see how you feel. If you feel better, stick with it. I personally, don't miss regular crust pizza and donuts because I can physically function in my life. It's a small price to pay.  However, I must say it did take many months for me to go completely and permanently gluten free because there is some much wheat in our food supply and sometimes I would indulge and then I would pay the price with those undesirable sysmptoms I mentioned. Good luck!
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