Husband has just been diagnosed with Chiari one malformation! Anyone any experience with this?

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Posting in AIBU for traffic. Husband has been having some headaches, brain fog, tingling abs numbness in hands and feet, and googling led him to believe he has MS.

GP eventually referred him for an mri - no evidence of MS but he has this chiari 1 malformation and we are awaiting input from neurosurgeons about this. He also is showing signs of a complication called a syrinx !

Please let me know if you have had any dealings with this or advices or experiences to share.

Hi, I was diagnosed with Chiari's as a teenager, also had a Syrinx. Not sure what I can tell you that will be helpful at this stage as the plan forward will depend on his symptoms, severity and what the neurosurgeon advises. My experience was quite extreme (there was a lot less awareness of the condition a few years ago and no one believes teenagers self reporting of symptoms) so it got quite severe before I was diagnosed. I had surgery at 15 but many people don't and the symptoms are instead managed.

What I will say is that as an adult in my 30s, I am happy, I work full time, I work out and in relation to my chiari's only take a small amount of medication to control some nerve damage left over from it.

Not personal experience but my best friend had surgery for chiari. They were quite unwell before hand, occasionally collapsing and losing consciousness. They couldn't drive as it would have been unsafe for them given the severity of the condition in them. They waited about 12 months for surgery, it was a long operation about 8 hours I think. They recovered really well and apart from a large scar on the back of their neck you wouldn't know they had ever had a serious neurological problem. Their balance isn't brilliant but they said it's better than before treatment and their balance had never been great anyway. They were about 35 when they had surgery which was about 12 years ago. They continue to work long hours in a physically demanding job with no problems.

My dd has one although hers is asymptomatic - it was only found as she was having a scan for something else! Chiaris can be progressive (gets worse) or non-progressive (stays the same). The vast majority are non-progressive (something like 84%) - that’s what we were told. DD has an mri every other year to keep an eye on it. She has no restrictions on her apart from the fact that she can’t do anything that is or simulates a vertical drop (like rides at theme parks although standard roller coasters are ok). Other than that she lives a completely normal life.

That's so reassuring thanks for your replies. My husband functions on a day to day basis but does get bad headaches. I am relieved it isn't MS but I didn't really think too much about what else it could be !