Chiari Connection International

Chiari Connection International

Lifestyle Suggestions
Note: These are simply "suggestions" from the list membership that have worked for them. Some may help and some may not.

Sitting At The Computer--Some Helpful Hints

*I find it is crucial to get the right height (for me quite high so my eyes are just above level with the screen).

*I have a high back chair which gives neck support AND very NB it also has adjustable armrests. I find if I can rest my arms it helps the neck muscles to not tighten up so quickly.

* I sit with a hot water bottle behind my lower back and a warm wheat bag draped around my neck.

* My computer 'warns' me every 20 minutes to take a break and then I get up and briefly do some stretching especially of the scalene muscles (I Googled it).

* I am on a mission to learn touch typing so that I will not have to look down at the keyboard.

*On really bad days I try to avoid the computer.

* On other bad days I have the option of using voice activated software and 'speak' to my computer but I still do not have the hang of this one.

Anyone else with: Arm pain and heavy arms with patches of dense numbness in the morning on waking, late onset Raynaud's phenomenon (my hands go white when I put then in cold or very hot water), my pulse at the wrist disappears if I lift my arm.

Pre Surgery:

1. Increase self confidence when dealing with Doctors. Our confidence is often so demoralized after a period of time dealing with arrogant Professionals who won't listen to us.

2. Educate yourself re ACM and ACM specialists, both Neurologists and Neurosurgeons.

3. If surgery is happening, relax; enjoy yourself as much as possible by going out for Coffee or whatever, esp. the 2 weeks pre surgery. It takes your mind off it for a while at least.

4. Go shopping a couple of weeks pre surgery and buy a nice PJ set (or two or three!!) dressing gown, toiletries, a few magazines, as your concentration will not be up to reading a novel for some time. Wear cotton underwear, it is more comfortable and flat slippers. A mask for the eyes is good, in the event you have severe photophobia post surgery, as hospital lights are always on 24/7. Take a small hairdryer into hospital with you, so that when you can wash and style your hair, plus, you will be able to dry gently (NOT BURN)

5. Nice cotton material/scarves to place around your head just to make you feel 'prettier' whilst also covering the incision and or dressing at the back of your head.

Surgery Suggestions While In Hospital:

1. Have plenty of fruit and nuts and fruit juice in hospital with you on the bed side table to eat/ nibble on as this helps to reduce and prevent constipation post surgery and the need to 'push down' as little as possible.

2. Be sure to have all analgesics organized and checked before you are discharged, and to continue to take what you were taking in hospital as of the time of discharge, are leaving hospital, the pain sadly doesn't remain at the hospital door!!

3. Supportive pillow for sitting up in bed and a soft pillow for resting the back of your head on and sleeping. I used a Kangaroo style for sitting up and a 100% feather down pillow for my head. I still use the feather down pillow where-ever I go, even in the car for a long journey (I keep a spare in the car!!!)

4. Don't suffer unnecessary pain post op, keep/demand if need be, your analgesia is regularly given.

5. One thing that was never mentioned to me in the hospital was the potential use of an ice pack. My staples, especially in the neck area, pinched a lot. Remembering back top the "joys" of childbirth, I remembered the help that an ice bag had offered. I asked for one. No problem. That made a HUGE difference with my discomfort from the staples.

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