Diagnosed yesterday... terrified and confused :(

Hello, I am newly diagnosed(yesterday) but a looong time sufferer of what I now know is Chiari symptoms.

I am 23 and the anxiety for the past 6 years trying to get a diagnosis for headaches and double vision has drained me... and now I have a diagnosis I am still not happy.

Since the headaches started I dont laugh as much anymore... cause the strain intensifies 1000000000x and no one ever understood that, I think people thought I was faking when I would curl in a ball clutching my head after coughing or laughing, so many others with Chiari have this and I feel for every single one of you with this, I never would wish this pain on my worst enemy.

At the minute with this website, I am struggling to read the words survivors? to me that means my Chiari has not killed me yet?

I have yet to speak to my neuro doc again yet, and I cant now for nearly 3 months, due to me going away.

The main thing I want to ask is, can I expect a "normal life span"? Do we get old? Will I go blind? paralysed? anyone know :( ?

In the letter from him to my GP he stated " we doubt we will want to do anything about this" ( the Chiari )

I know surgery is an option and even with my symptoms I feel it would not be needed.. yet

Is there a chance that I can maintain the same symptoms only for the rest of my life, or is it guaranteed to get worse? I would love to not have the double vision .... more than anything, did any of you have double vision that was fixed by surgery?

But really the main thing I want to know at the minute is... will I die? :(

Flower Hi and welcome- first i want to say RELAX and BREATHE- :D

I personally dont know anyone who has died from chiari. so i can not answer that question.

your symptoms can be treated with medication, excercise etc but DO NOT hyper extend your neck as you already know sneezing coughing and laughing can cause awful pain. also stay away from any type of massage to the neck and PT to the neck. Surgery you can get done when YOU feel the time is right thats your choice and dont let the doctors talk you into that, I chose to have surgery because the list of symptoms were just so life invading it was crazy. Get copies for your records of ALL scans and anything else done to you for future reference. Also remember NOT ALL Neurologists know Chiari and for that matter not all Neurosurgeons do either- so if you feel like you are being monkeyed around you probably are-I'd suggest maybe going to a NL who knows Chiari.

As for your eyes go to an eye doctor preferibly a neurologic eye specilist or if you have one who knows your eyes go to them-that way they already know your eyes and have a record.

And for your GP's statement he is a knucklehead for writing such a thing,he obviously does not understand chiari. and it will be likely up to you to educate him as you go along this path.

Some people with chiari live with it all their lives and dont even know they have it because they never have any symptoms...while others once the symptoms appear they seem to do a number on us, and it is up to us to educate the rest of the world on Chiari.

that being said your symptoms are likely to get worse over time- there is no set limit no one can say that oh your headaches will increase every 3 weeks or what ever OR your herniation will increase 3mm a year I dont even think a NS that is a specialist in Chiari is willing to say that-or not that i have heard of anyway- so as you see some of your questions can not be answered.


When I was first diagnosed, I read this somewhere and it helped. Chiari is not life threatening but life altering.

My surgery helped with vertigo, balance issues, neck pain, vision issues.

Hang in there and know we are all here to support each other.



Flower, it's normal to be scared with this diagnosis. We are all afraid of the unknown. When I was diagnosed I had never heard of Chiari. I said to my husband at the time that I was afraid I might die. And he said "yeah, you might; but you might anyway even without Chiari. Even though I didn't particularly like that answer, I knew he was right and it kind of put it into perspective for me. It was what it was and I couldn't change that; but I could change how I reacted to it. I know that sounds simple and it wasn't. I had to work at it often and hard. Becoming proactive in my care helped me a lot.

From the time I was even younger than you, I experienced fogginess, dizziness and vertigo. The bad headaches didn't start until I was in my late 20s and and lasted for several years and then myseriously just went away. I would still experience some headache when I laughed a lot, coughed or sneezed over the years. By the time I was diagnosed in 2007 I had raised my children and was a grandmother.

So.....yes....you can grow old with chiari. I had spent most of my life being misdiagnosed and my various symptoms treated. Trying to find out why I was getting the horrible headaches was so frustrating; I must have taken every kind and color of pill and still no diagnosis. It wasn't until 2007 that I got a diagnosis of Chiari and then had my surgery in 2010. The surgery helped me a lot, especially with the dizziness, vertigo, and fuzzy feelings in my head. I haven't had any headaches since the surgery. We all react differently to the surgery, but it has been a positive for me. Even though I also had basilar invagination surgery with cervical fusion I didn't experience some of the things I read about on here. I have met and talked to a lot of other people in my support group who've also had positive outcomes and whose lives have been changed by the surgery. Most of us in the group have had the same neurosurgeon do the surgery. It's important to learn all you can and find a good doctor/neurosurgeon to guide you as you make decisions about what's the best course of treatment for you. None of us, of course, knows what the future holds for us whether we have chiari or not. I don't know of anyone who has actually died from Chiari; when I got diagnosed and asked my neurosurgeon that question, he was reassuring that I was not to going to die from Chiairi. I know now that I lived a long life with Chiari, most of it very productive, including working 40 years for the government. I had bumps along the way, including the headaches, vertigo, and a lot of others which I didn't know at the time were Chiari related....when I laid on my left side I had double vision. That went away when I had the surgery and it's great to be able to now walk in a straight line. I'm still not perfect - whatever that is - but I feel good knowing that by doing the surgery, I have alleviated a lot of the worry I had since I was diagnosed and I know that I have done what I can to make my life better. So, Yes, it's possible to live a long productive life in spite of Chiari and in some cases, even without the surgery. Try to think positive...I know it's hard....the good news is that you have been diagnosed young and have an opportunity to take steps to make your life better whether it's with the surgery or without it. I will keep you in my prayers as you deal with having Chiari and making what I know are difficult decisions regarding your treatment. If I can be of any help to you, I'll be happy to do that.




I was diagnosed January of 2011 after the first NL blew it off. The second one I went to said yes you have Chiari, it's about 5-8mm long and the symptoms you described are the same as I as well as most of the people on the site have had.

After speaking to my NS who said yes to the surgery and then a second NS (to calm everyone elses fears) who said no. I pretty much stopped any and all investigating, and didn't schedule the surgery. I feel my symptoms are getting worse and I feel it's time to schedule the surgery. There are people on this site who's tonsil is quite huge but they have been able to manage the pain by medication and for now, have bypassed the surgery option. I have decided that surgery is the best route for me.

You are in my prayers and if there is anything I can do please don't hesitate to ask!


Thanks for your replies… put my mind at great ease.
I am still annoyed at the chiari being overlooked in 2 previous scans though!
I want to call every doctor ive ever seen that told me all the symptoms were anxiety related… and shout at them lol!

That is the exact reason I left my first NL! He did the MRI, started going over the results and said "It looks like you have Arnold Chiari Malformation....but don't worry about that, I'm going to up your anxiety medicine"....REALLY! You sit there and tell me I have this condition that I've never heard of and then say..."Uh, don't worry about it". Needless to say that was the last time I saw him.

yet to speak to him personally since he sent me for the mri to decide whether he can help.
I think his comment about doubting if we want to do anything about it might be due to the fact when I went to see him about my headache, vision, numbness etcetc he mentioned that surgery could be an option if anything was found, and I was like :confused: no thanks. When I am back in the country in 10 weeks I will try seeing him asap to talk about all

I wish I could bring giant Rainbows to all your questions, but I was diagnosed right away at the onset of symptoms which truly is very good luck I know. But as far as my travels with Chiari have taken me, without saving and going to a specialty clinic you’re not going to get many answers. We have something that the religion of science doesn’t really believe in yet, so there has not yet been long term or extensive studies done. Most doctors don’t know what to tell you because they don’t even know about Chiari (we all seem to show differently); so defense is to say nothing. From what I know I couldn’t tell you that you won’t die in honest, but I can tell you that I have not had surgery and I am working full time and definitely not dead and been doing so since my 2006 diagnosis. I have good days and I have hard days, I may not smile as much as I used to but I do still smile more than I deserve :slight_smile: and I can promise you that if you have any capacity to crack a joke to a nurse during something you wouldn’t wish on your worst enemy … You’ll get better service :slight_smile:

Good luck on the road :slight_smile: With faith and confidence in self, you can overcome anything.