Chiari Online Support Group

Newly diagnosed - how do you cope?

Hi all
I’m newly diagnosed Chiari 1 with syrinx C1-C4. I’m still coming to terms with the diagnosis, which came after MRI after dizziness and deafness in left ear. I have since had many episodes of vertigo. I’m struggling with fatigue, coordination, memory loss. I have many worries - how will I continue to cope with work? ( I work in admin for our wonderful nhs), the effect this has on my family - I can see they struggle when I am having a vertigo episode and am unable to function at all.
Does anyone else have these feelings? How are you all coping?
I have been told by neurosurgeon that I am stable and I will continue to be monitored. I’m definitely struggling with deafness and it is definitely having a detrimental effect on my life. Find it all very frustrating at the moment as not everyone understands what this is. I look like I have had one too many down the pub. At least I’m a cheap date for the hubby lol!


I can definitely relate to your story. I was diagnosed with chiari 1, 3 years ago. I can not drive, am no longer able to work and I have several episodes a week where I am not able to function I needed 2 brain surgeries to stop it from getting worse but it has not helped as much as we hoped. We ended up selling our house and moving to a new state that was much cheaper, which ended up being the best thing we could have done. My family has definitely suffered and our kids don’t always understand but we are open and honest about everything and we stay as positive as possible. Once we removed as much stresses as possible things have gotten much much better. Hang in there and definitely consider a second opinion.

The most important and easily over looked sentences in chadc232 response, is the one about stresses. Those of us that have lived with this for years need to STRESS to the newcomers Eliminate stress in your life! Stress is a killer, get rid of it.

1 Like

At least you asked, so many don’t. It’s a different day everyday. What is it you love to do? Understand, please, even though you look healthy, you are not. I was shocked when I first was told, I was in the E.R. for an Airbag explosion & that’s how I found out. I was RELIEVED , My father who was sprayed in Nam, we ALL knew i had something, we called it Agent ORANGE. But learn on what you can do to make your life better. I found essential oils, & scents, really help along with my low dose medications. Please don’t worry about it, just be educated. I bought a Chiari book, even though I will never have the decompression surgery, I am going to live my best life, no matter how hard it is, I make myself get up and Live, when I really want to die… Hope you can learn how to live with Chiari, Social Security finally finds this a disease & the V.A.

Stress is 100% a killer, thank you for that, it helps us all :heart::heart: