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[Twhit123]

Ok so I been reading and researching for about a month and finally got the courage to sign up. I have been told I have chairi malformation 1. Still in the early stages on getting in to see doctors. The problem I'm having is I don't know if it kills you and it has consumed my life this past month thinking about it. I am not eating right and can't seem to have a normal life from wondering about this. Can someone share with me how all of you all do it and if it is a death sentence.

[Mel5056]

Funny thing is when I was first told I said the same thing-i dont have symptoms.  In fact I reread an email to my neurologist friend and told her I had mild dizziness only.   Well as I hsve learned over the last few months. ..I have a lot more than I ever knew.  Since I am 42 I chalked up a lot of symptoms to old age.  Anyway I am truly happy if you are symptom free and pray you stay that way.  Just keep a log of weird things you feel so you have  a point of reference should you ever need it.  Good luck and keep us posted.   God Bless

[selmaS]

  Glad to hear ur visual fields look perfect, so many of us do have visual disturbances....

There are many Drs that will say Chiari is an incidental finding, and for u right now, it may well be, but u should monitor ur condition with a MRI with ne change in symptoms, and a CINE MRI may also be helpful to make sure u do not have a CSF obstruction.

[Twhit123]

I'm not really having symptoms. I work at an eye clinc for an optomologist and he thought my optic nerves look a little elavated so as a precaution he sent me for MRI and MRA. They said scan showed nothing except chairi which was nothing. They ref me to a neurosurgeon. I called and made a appt with him only for his office to call me back and say I didn't need to see him only a neurologist. So I went to see the neurologist and he said I passed all the test with flying colors and that the chairi was nothing. So I am now trying to find someone who knows about this and get a second opinion. Oh by the way my optomologist and a neuroop that our office works with is watching my vision which is still 20/20 and visual fields look perfect so far. I live in Florida

[Mel5056]

Hi there and welcome.  You are not alone....no matter what we are always here for you.  I am in the same boat as you...its consuming my thoughts and life.  But from what others have said to me...talking with your doc (chiari specialist only) with help settle your mind.  My first appt is not until may 1 so i look forward to that.  Please keep us posted and reach out when you need to.

[selmaS]

  Hi and welcome to the Chiari forum.

Many of us here that have had surgery do have our surgical experience posted on our profile page in a journal, just click on our name and once on the profile page look for the journal, and feel free to read them as u will get insights about how this condition affects us.

As Kristinamarie mentioned above, Chiari itself is not a death sentence, but left untreated or if u have other underlying UNDX'd conditions they can affect u and ur overall health.

There have been Chiari related deaths, but again it is other conditions related that had the  negative effect.

It is very important to have the right Dr....u need a true Chiari specialist and one that will test u for ALL related and non related conditions.

Stress and anxiety can cause ur symptoms to flare and u will feel worse, so do try to relax, and trust u will find the Dr that is right for u.

May I ask what symptoms u have had that u went for ur original testing?

[Krystinamarie]

I just got the courage to sign up also!


After five years of dealing with daily symptoms including debilitating migraines, nausea and vomiting, numbness and tingling, and several others I have finally been diagnosed with chiari 1 and I am about a month away from having surgery. Although I am terrified I have looked at this diagnoses as a blessing. For years I went through tons of medication and various therapies to try and get my symptoms under control with no relief. And now I have a chance to truly improve my quality of life.

I had the same questions when I first found out about the malformation and it is not a death sentence! I was told by my doctor that if left untreated symptoms can potentially get worse which is why they recommend at least monitoring the condition with mri and ct scans.  Some people can treat their symptoms with medication while others need to have surgery. Then there are the lucky ones who have no symptoms at all.

I have  made it this far because I have a wonderful support system and I have been very motivated to find the best doctor for me so I can start to live a normal life. Try to look at this diagnosis as the start to you getting yourself better! What are your symptoms? How did you find out about your malformation?