My Unexpected Adventure with a Brain Tumor–Part 14 (Vision and Hearing Challenges)

Having an eye that closes is something you probably never appreciated as much as you should have.  Should you find yourself being the owner of a partially-paralyzed face with an unblinking eye, I can tell you that even if you’re like me and you can’t handle the idea of putting in your own eye drops, you do get used to it, you will find what makes you comfortable, and you will become a master of it.  The main concern is how exposed/unprotected that wide-open eye is.  Without the eyelid being able to pass over the cornea and lubricate it all throughout the day, it dries out, which puts it at risk for infection…and then you could permanently lose your vision.  (Cue the eye drops all day long.)

It’s eye-opening (pun intended!) to realize how ever-protected your eye is when you instinctively blink.  Every time I take a shower now I have to shield my left eye with one hand so that shampoo doesn’t run into it.  Every time I pull my shirt over my head I have to be extra careful that I don’t accidentally brush it across my wide-open eyeball.  There are so many instances when you realize you didn’t blink when you should have/wished you could have.

Because I have had lingering blurry/double vision, couldn’t wear my contacts, AND had no back-up glasses, I am still being held up in several areas in my recovery (balance, driving, etc.)  The neurosurgeon referred me to a neuro-opthalmologist, Dr. Moss, at Stanford, who evaluated me and determined which issues were caused by surgery/facial paralysis and were therefore still needing time to heal, vs. which issues were likely there before surgery.  She referred me to an oculoplastic surgeon to see about getting a gold weight implant to help my eyelid close and provide more comfort, (see this post to hear how that unfolded) and she suggested that I see an optometrist to try to get a prescription for my current visual state, (followed by another one a few months later, after more healing has taken place).  I still have some double-vision and nystagmus.  She suggested wearing a contact in my good eye for now (and to definitely NOT wear one in the funky eye), and I could be patching the weak eye to correct the double vision.  Once everything heals and I get some long-term glasses I may need a prism lens as well to refine things.  Being able to visit with a neuro-opthalmologist was pretty ideal for my situation, and understanding what to expect and how to proceed with getting my vision back to where I want it to be.  (My physical therapist, who specializes in neuro and vestibular rehab, also had exercises to help with some of the vision issues.)

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First glasses I’ve had in 15 years!  Too bad they don’t work…

I did go to an optometrist somewhat soon after my neuro-ophthalmologist appointment, but it wasn’t particularly helpful.  With the blurriness caused by dryness and thick drops, I didn’t get a helpful prescription after the eye exam.  So…I continued not being able to drive, and I continued just waiting for my left eye to heal until I could get a prescription later.   (Read this post to see how it unfolded.)

I know that I’ve mentioned a lot in previous posts how annoyed I was by my left eye being SO flared up post-surgery, but it did calm down after a few weeks.   I typically did not tape it during the day, but I had my husband tape it every night and had him squeeze a thick ointment in it before he did so.  Often it had crept open under the tape by the time I woke up, but at least the thick ointment prevented it from drying out.  (The ointment also left my eye extra blurry in the mornings, which was sort of annoying.)  I wore a sleep mask over both eyes in the night; I found that I slept better when all the light was kept out of both eyes.   I used thick Systane lubricating eyedrops throughout the day (found at any pharmacy).  The hospital had sent me home with Refresh drops, which only gave relief for a matter of minutes, but Systane could buy me SWEET relief anywhere from 1-4 hours.  (It’s like jumping into a pool on a hot day.  Aaaaahhhh.)  The hospital had also sent me home with a few eye bubbles, but I never used them.

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Arrrrrrr…

As far as hearing goes, I definitely did lose 100% of my hearing in my left ear, which I knew would happen with the translabrynthine surgical approach.  I do have to ask people to repeat themselves often, and it is definitely hard to hear if there is any background noise at all, but it still feels like the least of my concerns.  People are pretty understanding if you just say, ” I didn’t hear you.”

I’ve had some minor tinnitus, not at all in a ringing form, but more of just a pulse in my ear.  A few times it’s been a little more obnoxious than that,  reminiscent of a car horn/alarm going off, which happened juuuuust as I was trying to fall asleep, but it went away and has only happened a few times.

To sum up the topic of vision and hearing challenges, it takes a bit of emotional agility and patience, as well as a sense of humor, but you can adjust to these changes in your senses.  (And remember, it could always be worse!)

(Bonus:  if you sleep on the side of your working ear, you can sleep through anything!)

 

 

 

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