Sally Stap's Blog, page 7

TheBlogPile – Muscle Memory

Do you ever find yourself unable to explain something that you do so often that it's steps are automatic?  I talk about muscle memory in my latest contribution to The Blog Pile:

http://theblogpile.com/sally-stap/muscle-memory/

 

Acoustic Neuroma Lessons – Eye Health #3

The Recovery Phase:

First, I have to add something that I didn't mention in Part 1 or 2. The REASON why we care so much about a dry eye. It can cause serious damage to the cornea and vision loss. Also, a dry or damaged cornea is very painful, which I can say just from having it dry. It is important to have a dry eye examined regularly by an ophthalmologist for cornea damage.

For a few months following brain surgery, I was unable to wear a contact lens in my dry eye. I lubricated it regularly with artificial tears or gel. I learned to primarily use my left eye because my vision is poor and my left eye was corrected with a lens, leaving an imbalance. I was fortunate because, although I couldn't see progress, my muscles were slowly improving. At about 4-5 months I was able to start wearing a daily disposable lens in my eye, which helped to protect and keep the eye moist. With regular use of eye drops.

One side effect of brain surgery surgery can be double vision. I didn't realize until after I could wear a lens in my eye that I still couldn't see things quite right. What I learned is that “double” isn't like seeing the Doublemint twins (if you remember those commercials). Double can be two images side by side; above each other; or skewed, which is what I have. It’s a combination where one image is a bit to the right and up. Almost in focus but “skewed.” For me, that hasn't changed. The eyes are in line visually, but see a bit differently.

I also learned how important a proper tear layer is for vision. My dry eye can't be fully corrected because it is usually either too dry or too wet with drops. Just right is pretty rare, which perfect vision requires.

Some recipients of Acoustic Neuromas lose the feeling in their face in addition to the loss of movement. That is quite dangerous, as you can't feel when your eye is dry. I never lost feeling, only movement.

My face slowly began to regain movement at 7 months. At about 2-1/2 years, I was able to have the gold weight removed because my eyelid was able to close adequately by itself. I was very excited because I was able to have it removed a couple months before Kendra’s wedding. As you can imagine, following facial paralysis, pictures are a huge deal. Getting rid of the weight in my eyelid was a major milestone in my recovery.

Once again, it was an outpatient procedure. Awake but numbed, I talked to the doctor about minor things while he cut into my eyelid to remove the scar-tissue surrounded weight. After what seemed like hours, but was less than one, he was done. Of course, I had a black eye again to recover from so I laid low for a few days.

When my eye weight was removed, the doctor put a punctual plug into my tear duct. You know, that round little hole that you can see at the inside edge of your lower eyelid?  That's actually a drain, so the plug kept tears from escaping my eye, which kept what little tearing I had in my eye longer. It stayed in for a couple months and then fell out one day. I didn't have another one put in as I had adjusted to the muscles having to do all the work without the assistance of a weight.

I still have to put eye drops in – sometimes a lot and sometimes not much. I haven’t been able to predict how my eye will behave. Some days I reach a point where artificial tears no longer help and only closing helps. A nap allows my eye time to rest and build up its tear layer. When I awake, it feels better – at least for a while.

There are times when it suddenly waters a lot – usually related to eating or chewing. It isn't repeatable though or I would be chewing all the time!

The good news is that when crying, I only needed a tissue for one eye and half a runny nose!

Please add comments below about your experience with dry eye.

gob·ble·dy·gook – hmmmm

OKAY. . .  So, see the picture above? That is what the post I just sent is supposed to look like. I copied html from the Goodreads site and it looked good to me - and on my blog. However, I learned that it looks like gibberish in email. Sorry about that.

If you want to follow the link, you'll have to visit my website. Or look up Giveaways on the Goodreads website!

Sally

Goodreads Giveaway of Smiling Again

.goodreadsGiveawayWidget { color: #555; font-family: georgia, serif; font-weight: normal; text-align: left; font-size: 14px;
font-style: normal; background: white; }
.goodreadsGiveawayWidget img { padding: 0 !important; margin: 0 !important; }
.goodreadsGiveawayWidget a { padding: 0 !important; margin: 0; color: #660; text-decoration: none; }
.goodreadsGiveawayWidget a:visted { color: #660; text-decoration: none; }
.goodreadsGiveawayWidget a:hover { color: #660; text-decoration: underline !important; }
.goodreadsGiveawayWidget p { margin: 0 0 .5em !important; padding: 0; }
.goodreadsGiveawayWidgetEnterLink { display: block; width: 150px; margin: 10px auto 0 !important; padding: 0px 5px !important;
text-align: center; line-height: 1.8em; color: #222; font-size: 14px; font-weight: bold;
border: 1px solid #6A6454; border-radius: 5px; font-family:arial,verdana,helvetica,sans-serif;
background-image:url(https://www.goodreads.com/images/layo... background-repeat: repeat-x; background-color:#BBB596;
outline: 0; white-space: nowrap;
}
.goodreadsGiveawayWidgetEnterLink:hover { background-image:url(https://www.goodreads.com/images/layo...
color: black; text-decoration: none; cursor: pointer;
}


Goodreads Book Giveaway








Smiling Again


by Sally Stap

Giveaway ends April 24, 2014.

See the giveaway details
at Goodreads.

Enter to win

Acoustic Neuroma Lessons – Eye Health #2

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.



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

Acoustic Neuroma Lessons – Eye Health

Part One - There's a lot to say here, so I'll continue in the next post.

When I was diagnosed with an Acoustic Neuroma, one of the things that I read about was the effect on eye health.  That just didn't make sense to me. I read about dry eye, gold weights, and patches. It all sounded rather horrifying and I quickly discounted it as anything that I would have to deal with.

After surgery, life taught me otherwise. I learned a lot about eye health -- I no longer had the luxury of ignoring it. When I woke from brain surgery, the nurse put drops in my right eye every few minutes. In my confusion, I didn’t understand why she didn’t put them in both eyes. It even occurred to me that I didn’t understand why she was doing it at all. However, I noticed that after keeping my eye open for a couple minutes it would get dry. Then it started to sink in -- my face was half paralyzed. There were many issues to deal with, but for now I’ll just talk about my eye.

My facial nerve was stretched across the tumor like a ribbon.  After surgeons spent hours irritating my facial nerve by separating it from the tumor, it stopped working. They were confident that at least some movement would return to my face, but they didn't know when or how much. It would be at least 6-7 months based on a nerve regeneration rate of an inch a month.

Since facial muscles also involve the muscle that close the eye, blinking became something that I had to think about. The muscles responsible for opening my eye were not affected, so opening my eye was not a problem – just closing it. My normal, left eye was finished with a “normal” blink while my effected eye had only made it halfway. I had to learn to think about making a complete blink. I had to close, relax, and feel my eye close fully. On top of that, the eye had lost its ability to tear, effecting the eye as well as sinus on my right side.

To be continued. . .

Book Signing in Kalamazoo This Saturday!

There’s more than just the writer. . .

My book signing yesterday went great and I was privileged to meet some of Elkins’ kind and generous people.  I loved every minute. As I packed up my little chocolate basket and drove away, what I reflected on was how many people helped me get there.  Without the support of A LOT of people, I would not have found the confidence to actually finish writing Smiling Again.  By not being honest and vulnerable about my experience, I would have missed out on the stories of others.

Main Line Books is an adorable bookstore that made me want to curl up on the comfy couch in the back of the store and read. Warm people who stopped in shared stories of perseverance in the face of adversity -- both personally and as a caregiver.  One common thread was focus on their loved ones and not themselves.  People draw strength from other people.

For each person who has encouraged me by completing a step in the publishing cycle, purchasing my book, giving feedback -- or just sharing your personal story -- I thank you.

Yippee! Today I’m in Elkins!!

Please stop by to say hi! I'll be at Main Line Books from 11 to 1.

Caregiver Tip – Time is the Ultimate Gift

I love spending time with my friends and family.  Yesterday, I spent time with Kayla and smiled after leaving.  I talked to Kendra on the phone and felt warm and connected even though she’s across the ocean living in Europe.  Sometimes after being with the people in my life I don’t recall the conversation, but always remember the time spent.  It gives me strength.

One of my friends laughs most at a line in my book where I describe my brother as “giddy.”  He normally isn't, but was after a short phone call to me in the hospital right after my brain surgery.  I could hear in his voice that he was relieved that his sister was going to be OK.  It was short phone call, but encouraging and meaningful.  I found strength in his uncharacteristic giddiness.

I recall my friends visiting me right after getting home.  They were each there for only a few minutes, but they were moments – not just time.  Margie helped me feel understood in my terror.  Nancy pushed me forward, “You’ll be fine” in a confident tone.  Time given as a gift to me was like fuel to my spirit, building strength to move forward.

As a caregiver, the ultimate gift is time.  Just sitting with someone is very important and helpful.  When someone is facing a medical crisis or recovery, you are most likely not going to have an answer or solution.  There is a time to do research to help educate and evaluate treatment options, but there is also a time when you just need to sit. Together.

God tells us to be still at times and loves to have us spend quiet time listening to Him. Speaking to Him. Being together.  Pulling strength from that relationship.

We only have so much time in our day, our weeks, and ultimately our lives.  Sharing it with others is the ultimate gift.