Chiari Online Support Group

Death and chiari

Can chiari actually kill me, or is it a matter of giving up, lack of quality of life etc…

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It depends on the severity of your case I am pretty sure, but as long as you continue to get decompression’s as needed, and such, then I think it should be fine? It is a possibility but there is always risks in any chronic illness.

Hello, I hope you get relief. I am 40 years old and I am 30 days post decompression surgery today. I feel good, have relief from headaches, dizziness and tiredness. Other symptoms I had and have I think are from things I can work on and change. I continue to focus on exercise and healthy eating as much as I can, I notice it makes a difference in my quality of life along with meditation. Relief from chronic headaches was worth the surgery. I had zero post op complications and healing very quick. I am very blessed and grateful. I dont think we should ever give up and we are never too old to pursue a good quality of life.

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Do you mean with or without surgery?

Both! I know I was weeks away from death’s door before I had my decompression surgery. I went misdiagnosed for 10 years, and ever-so-slowly, all my systems were shutting down. (the brain stem is what gets squished in Chiari’s - and the brain stem is what runs the electricity to your heart, lungs, intestines, etc… everything ‘automatic.’) And, I did see an episode on TV - a show that’s only showing re-runs - “Dr. G - Medical Examiner.” One of her bodies ended up being a 25-year old man who just keeled over from Chiaris. His heart stopped suddenly. He had been having problems with fainting spells (I’m sure due to blood pressure drops - which I still deal with even post-surgery. Why I eat a lot of salt, now!!) But, I must say - since my decompression surgery in 2012, quality of life has VASTLY improved! I am 75% better. I get 3 completely normal, symptom-free days. Then, every 4th day, all my Chiari symptoms return for 24 hours… Then… I’m normal again. It’s odd. But, I thank the Lord ENDLESSLY for 3 good days - when prior to surgery, I didn’t even have a pain-free minute!!! :pleading_face::flushed:

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Your experience with this terrible monster matches my own almost exactly.
I had decompression in 2012 as well. Herniation was at 22 mm according to the MRI. My surgeon said if they hadn’t caught it when they did I had only a few months before I was dead or quadriplegic.
I’m probably at about the 75% mark like you as far as getting my life back. The headache is always there - it will dull sometimes or get extreme - but it’s always there like a pebble in your shoe that just won’t come out. My balance has never fully returned either and because of that I can never go back to building houses, a job I loved so much.

There’s so much in my life now that I have no control over now. But there’s a few things that I do, like my attitude about everything. I have accepted that these are things that I can’t change so I’ve adapted to a “new normal” as I call it. I also come from a small community with no major cities for hundreds of kilometres so there is nobody like me that I can share my experiences with and have them understand what I feel. My family tries but they can’t quite grasp the concept of it all. That’s why I appreciate this group.
I know this wasn’t the point of this thread about Chiari morbidity, but thank you for sharing your experience, it makes me feel a little less “lonely” in this whole thing to know that there’s someone else like me.

Wow! Interesting post. It’s odd that I too have Chiari 2.2 cm, but have just headaches and a few minor symptoms but can live and function w/o the surgery. Good luck.