Tag Archives: Dry eye

SURVIVAL of Holiday Festivities – The Acoustic Neuroma World

Hi everybody!  I’m here, just haven’t had anything to share for awhile.  However, that changed with the season. For some, this will be the first holiday since a craniotomy or radiation. Or perhaps the first season of watch and wait after finally learning the source of symptoms. I thought I’d share my personal tips for survival.

Holidays are a challenge for those of us who have: (check those that apply)

– Head hurts (no further explanation needed)
– Tinnitus (loud, not just ringing, but buzzing, radio station sounds, ringing that gets worse in noisy settings)
– Single-sided deafness (doesn’t just cut hearing in half but confuses brain signals which amplifies background and side noises while ignoring voices that are right in front)
– Full or partial facial paralysis (making eye dry and/or self-conscious about smiling or eating)

PRIOR to Festivities, if possible:

– Take a nap
– Pack eye drops & tissue
– Pack as much humor as you can
– Think about packing one earplug
– Pack pain medication

DURING – Once you are “there”, wherever that might be, consider the following:

– Be calm. No need to scurry or move. Keep your head calm.
– Find the most comfortable chair (one high enough to have a headrest is heaven).
– Sit as far from speakers as possible.
– If possible set with your deaf ear toward a wall so you won’t have to strain your neck to hear (which may make your head worse) — and you won’t inadvertently miss someone approaching you and talking with you being aware. “What?” being our too familiar response to that jolt of awareness. (ears being on the side of the head doesn’t help single sided deafness, but that’s another discussion)
– Smile with your eyes. Sparkly eyes pull the viewers eye away from the mouth.
– Don’t stress about not hearing. Seriously, don’t get stressed.
– People watch – really study people around the room. It’s fun to watch mannerisms. I saw a play in a foreign language once so hearing didn’t matter – I got the story through physical movements of the cast)
– Focus on what you have — not what you’ve lost. Perspective is a good thing. Loss is real, but only living can bring joy.
– Once in a while close your eyes. Inhale, exhale and identify holiday smells.
– Focus your hearing on laughter and joy.
– Take mental snapshots. (Maybe phone pics too) but the idea of a deliberate mental snapshot is more likely to be saved in your memory for later retrieval (see below for your first opportunity)
– Laugh a bit.
– Take a walk or step outside for some air and silence (depending on weather where you are – here in Michigan you may freeze in place)
– Drink a lot – of water (alcohol at a minimum as you know your ability to handle, but it usually doesn’t help any of our issues)

AFTER – Once you’ve survived and gotten through a night of loud noises in your head, ponder these ideas if you can:

– Plan for morning after hangover and if possible stay in bed.
– Accept this opportunity to be still and rest
– Close your eyes and think past head pain to go through your mental snapshots. (see above). Remember the funny, the adorable, the cringe worthy. . .
– Go for a walk. Sometimes I have to start really slow, but the rhythm of walking seems to be calming to the head and the relative quietness of outdoors (if possible) are calming.
– Drink a lot of water.

I’m sure many warriors have other ideas for surviving, but here are a few of mine.

Happy Holidays!

Acoustic Neuroma Lessons – Eye Health #2

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Initial Treatment

In the hospital immediately following surgery, nurses taped a plastic bubble over my eye, providing a greenhouse effect.  Moisture built up in the bubble and kept my eye from drying out.  They also put lubricant in my eye that was a messy gel that liquefied and coated my eye.

The surgeon suggested putting a gold weight in, which I learned was actually titanium.  Having it sewn into my eyelid was good news because I had learned that a small weight would help the lid close more effectively.  The bad news is that you don’t get a gold weight if your face movement will return quickly.  It was a reminder of the long road ahead.

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Different samples were taped to my eyelid to get the correct weight – just enough to close my eye but not too heavy or I wouldn’t be able to open it. After going back and forth, a decision was made. The appropriate weight was heavier than ideal but necessary due to the extent of my paralysis. The weight had links in it like a watch so it would curve with my eyelid. (the picture shows the size, a little over a half-inch.)

Having the platinum weight sewn into my eyelid was a short procedure done while awake with local anesthetic.  Well, short according to the doctors.  It felt like the longest 40 minutes of my life.  It was very strange to have someone cut into my eyelid and insert a foreign object.  Then they stitched me up and sent me back to my room. My procedure was done while I was still in the hospital, but frequently they are added several weeks or months later.

I continued to use the bubble only at night and then with time I was able to only use nighttime gel.  Some doctors recommend scotch taping the eye shut or the use of an eye patch.  My doctor didn’t want me to do those things as he felt that I could scratch my cornea.  As with anything in medicine there are different opinions on treatment and its whatever a doctor and patient agree to. Mine preferred bubbles.

I’m not very knowledgeable about other options but I’ll list them for info.  Googling any of them will provide more detail.

– A procedure called a Tarsorrhaphy partially sews the eyelids partially closed until movement returns.

– Eyelid Palpebral Spring surgery is another option, which assists with blinking.

– Lateral Canthoplasty is a procedure done by shortening the lower eyelid to keep the lower eyelid from falling from the eye.

Anyway, back to my journey. I now had a black eye to add to my existing appearance issues – a row of 29 staples behind my ear from brain surgery and a motionless right face. I’ll never forget the self-consciousness as I was wheeled out of the hospital and crawled into my waiting car. I couldn’t believe what I was living but the pain reminded me that I was indeed alive.

In Part Three I’ll talk about recovery and how things have changed — or not — over time.

Note: Pictured above is a NitEye Dry Eye Comforter Eye Bandage. They aren’t on google but can be found here: NitEye