Tag: Chiari

SoCS: the reason

The reason I haven’t been posting much lately is that I am getting ready to have surgery for Chiari malformation in late October. There is a lot to do to get prepared, including a bunch of tests, which, along with the rest of my medical team visits has been taking up a lot of time and my limited brainpower.

I also was trying to keep some fraction of my volunteering and online advocacy going but now push has come to shove, as they say, and I am setting almost everything aside for now to concentrate on my health. I need to rest more and not tax my already over-taxed brain.

My poor brain has been spending the last 2 1/2 years without the right amount of cerebrospinal fluid and my symptoms seem to be intensifying a bit, so I need to acknowledge that. I knew I’d need to be on a long hiatus after the surgery, so I’m practicing now.

That being said, there are a few commitments that I plan to keep, the Boiler House Poets Collective residency at the Studios at MASS MoCA and the sing-along hosted by the Madrigal Choir of Binghamton. I may not be much help for either of them but it’s important for me to be there.

I’m giving myself permission to stop trying to keep up with all the causes that I usually do, so I’m up-to-date to do comments or letters to elected officials and government agencies or just contribute to conversation. I will try to read just my favorite writers and columns. I need to get used to deleting things without opening them.

Ironically, I may post here a bit more during the weeks remaining before surgery. If there is less to keep up with, I might be able to reserve some time and brainpower to post.

If I don’t manage it, you’ll know the reason.
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Linda’s prompt for Stream of Consciousness Saturday this week is “reason.” Join us! Find out more here: https://lindaghill.com/2026/09/11/the-friday-reminder-and-prompt-for-socs-september-12-2026/

SoCS: sleep problems

I have quite a few problems involving sleep – or the lack thereof.

I often have trouble getting to sleep, staying asleep, waking up early and not being able to get back to sleep, not feeling rested after sleep. I’ve tried various things to help, all the sleep hygiene sorts of things, physician directed melatonin and medications, etc. but nothing seems to work long-term.

It seems, now that we know about my hEDS, cervical instability, Chiari, and a few more diagnoses, my sleep problems at least make sense.

One thing in particular may be due to a specific diagnosis. I developed sleep apnea a couple of years ago, although I score low on the Epworth scale. I’ve been treating it with an autoPAP, so I am breathing adequately while I sleep, which is, of course, a good thing.

One thing I wonder, though, is if I developed apnea at this time due to my Chiari malformation. One of the things that Chiari can cause is sleep apnea, so I’m wondering if, after my surgery, my sleep apnea may improve or even disappear. Sleep apnea can be caused by hEDS, though, so maybe not. It just seems odd to me because I’ve had the hEDS forever, even though it wasn’t diagnosed until this year. On the other hand, the apnea doesn’t seem to have started until the Chiari developed, obstentisibly in March ’24 when this big batch of troublesome symptoms started.

So, this post reveals one of the dangers of stream of consciousness – that the brain runs off using background info that the reader can’t follow. I’ll try to go back and put in some links that may help this make a little more sense.

It’d probably turn out better if I slept on it, but there isn’t time for that…
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Linda’s prompt for Stream of Consciousness Saturday this week is “sleep.” Join us! Find out more here: https://lindaghill.com/2026/08/28/the-friday-reminder-and-prompt-for-socs-august-29-2026/

One-Liner Wednesday: Chiari

When I saw the specialized neurosurgeon last week, after posting here for positive vibes, they asked what my three most troublesome symptoms are and I answered, “Brain fog, fatigue, and balance problems;” they told me that surgery for Chiari malformation should help all three, so I will have that, probably in late October.

This update is brought to you as part of Linda’s One-Liner Wednesdays series. Join us! Find out more here: https://lindaghill.com/2026/08/05/one-liner-wednesday-the-kicker/

One-Liner Wednesday: good vibe request

Tomorrow (Thursday), I will have an initial consultation with a specialized neurosurgeon in Rhode Island who may be able to address some of my health issues and would appreciate any prayers or good vibes you feel moved to offer. ❤

Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2026/07/29/one-liner-wednesday-nothing/

SoCS: in a brain fog

Sometimes, I remember what I used to know and be able to do.

Sometimes, I can’t.

The brain fog from the cerebellar ectopia is perhaps being made worse by my decline in kidney function.

Or maybe by the summer weather.

Hard to say.

It’s scary, though, especially because it’s been going on for over two years now. There is hope for untangling all the underlying factors and treating them – or, at least, some of them – but probably no guarantee of getting back all my lost functionality.

Sometimes, I manage to be hopeful in a realistic sort of way.

Sometimes, not so much.

Today, not so much.
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Linda’s prompt for Stream of Consciosness Saturday this week is to begin the post with “Sometimes.” Join us! Find out more here: https://lindaghill.com/2026/07/17/the-friday-reminder-and-prompt-for-socs-july-18-2026/