I want to share what many of us with Chiari go through when we have a set back – like my visit to ICU two weeks ago.
When you have Chiari Malformation (The Weasel), there are many things you try to avoid. These three we try to avoid at all costs:
- Whiplash or whiplash like blows to the head and neck: a whiplash blow causes the Chiari to swell – putting pressure on brain, brain stem and central nervous system (spine). This swelling can also interfere with spinal fluid flow.
- Hyper-extension of the neck backwards: this causes the Chiari to swell – putting pressure on brain, brain stem and central nervous system (spine). This swelling can also interfere with spinal fluid flow.
- Spinal taps: these can pull the Chiari downward into the spinal cord, putting more pressure on brain stem and central nervous system – not good folks, not good.
Well, never being one to do things half way – I hit the mother load on April 21st and did all three! I fell and hit my head on a chair – whiplash like blow – and slipped into coma. Which meant they had to hyper-extend my neck backwards so they could put me on a ventilator. Then they did a spinal tap to try to figure out why I was in a deep coma — Hat Trick!!
I am VERY symptomatic right now because of this event. Here is what I do when I have this kind of serious flare up / set back:
- Physical therapy for my unsteady gait and coordination, feet numbness and leg weakness, relaxation of neck muscles to help ease or get rid of my “Chiari Headache.”
- Occupational therapy for my right hand weakness – can’t hold a pen, open a jar, etc. Hand / eye coordination – brushing teeth, combing hair, tying shoes … this can get funny fast – tooth brush in hair, hair twisted around brush three times, shoes thrown across the room. Or frustrating / discouraging, if you are new to The Weasel Game!
- Speech/Cognitive therapy for my swallowing problems which lead to choking and long bouts of coughing (yuck) and my hoarseness. They also help with the next ones – which I can’t joke about or make light of because it breaks my heart and scares the hell out of me every time I have a set back. Memory issues (brain fog), Dysnomia / Aphasia. Most Chiarians deal with a mild form of these disorders daily but it is always made worse when we have a set back 😦 It does not affect intelligence but interferes with recall and communication. We forget words or have difficulty coming up with specific words when writing or speaking. We may know the word we want to use but are not able to voice it. Or we may use the wrong word and are confident we have used the correct one. We transpose words when writing. We may recall what we did 5 years ago but have no memory of what we had for breakfast today. These things are exacerbated when we are sick, tired, in a crowded room, loud environment, or large open space (mall, grocery store) – thus that ‘blank stare’ when you are trying to talk to us in these situations. Language therapy and word recall exercises help improve the symptoms until the next set back.
So when you see a Chiarian putting on a happy face, joking about this and that, or making light of their issues … or not sharing at all … please always remember they are dealing with these types of issues E V E R Y single day – not just when there is a ‘set back.’
“I do not ask the wounded person how he feels, I myself become the wounded person.” ~ Walt Whitman
Copyright © 2016 Brenda L. Surin. All Rights Reserved.