Tag Archives: brain surgery

Facial Paralysis: The Day I got My Sniff Back

Diagram of Facial Muscles

The first time I visited my facial therapist, Jackie, I learned a lot about facial muscles. Some pull up, and some pull down. Some are rather large, while others are narrow yet long, or short and wide. It had been almost a year since my surgery and the side of my face was just starting to move a bit. Jackie gave me the above diagram and explained to me that while my face was initially paralyzed on the right side, it was now a combination of paralyzed and frozen. While some movement had returned, it immediately had been frozen by muscles that quickly went into spasm. (She also explained Synkinesis, or the mis-wiring of the healing nerve, but I’ll address that another time) What?

Simply put, the brain had been trying to use those paralyzed muscles for so long that it tried too hard. So, when movement returned, the brain kept up with an intensity that was more than needed – causing Charlie Horses in my facial muscles. “But it doesn’t hurt. . .” I protested.

She explained that facial muscles experience Charlie Horse spasms just like your leg muscle in the middle of the night. Except, unlike leg muscles, facial muscles aren’t connected to bone at each end. “What?” She talked me through massaging, stretching, and squeezing various facial muscles until they did hurt. Releasing a facial spasm involves a combination of no pain but a lump, followed by intense sharp pain, and then a quick flash of more pain before it gives up and relaxes, now pain free and lump free. Allowing the muscle to now move as much as it can at this point – possible quite a bit and possible very little.

Acoustic Neuroma patients often have a characteristic look in the face. The lip comes up a bit with a flat motionless nostril. (Looking at the diagram you can see that several muscles come together in that lip/nose area.) In the summer of 2010, during a visit almost two years after my surgery, Jackie asked me to focus on the muscles in my nose. After having me push the very corners of my nose up like a pig snout, I laughed, but felt and saw a change. However, when she asked me to put my thumb in my nose and squeeze the side of my nose between my fingers, I looked at her. “Trust me,” she said.

“Well, ok.”  So, I put my thumb into my nostril and squeezed my first finger and thumb together. (Just fyi, there’s lots a sanitizer involved in facial therapy sessions.)

“Just hold it.” And I did for probably a minute or two. “Now let go.”

I looked in the mirror on her desk and sniffed. The side of my nostril moved for the first time since surgery. My eyes got big and I grinned. “Did you see that?  I got my sniff back.” And I sniffed again. And again.

And just one more time. “sniff”

 

Lessons Learned – I just wanted a soda

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There’s a time when caramel colored, sweet, tangy, syrupy, carbonated beverages really hit the spot for me.

A couple days following my brain surgery, I desired a cola. I had been given jello and juice, but nothing tasted right. I wanted to taste something familiar. So, the nurse brought me a cup of ice and a can of Pepsi. I salivated as I watched the caramel liquid flow and bubble over ice. I savored the bubbles as they rose and fell in the white Styrofoam cup. I almost shook with excitement as I drew the drink and straw to my mouth.

By this point, I had learned how to drink again. I held the droopy side of my mouth closed and I drank through a straw held between my still functioning side’s lips.

I almost closed my eyes in delight at this little pleasure and return to normalcy that I anticipated with my first sip of Pepsi. I slowly drew liquid through the straw and onto my tongue as if it were a fine wine I was tasting.

Almost spitting but instead gulping awkwardly, I said, “NO! It tastes wrong,” I opened my eyes widely. “Something must be wrong with this can.” But then it hit me, just as each loss I had encountered since waking up. The nerve that managed my sense of taste had been bruised and made soda taste metallic, tasteless, and wrong. Everything had been bland and tasteless so far, but I hadn’t expected soda to taste worse!

So, I pushed the cup and can away and returned to water and ice. Ice that was as crushed as my heart.

Over time, my taste returned to normal, but there are still times when a metallic taste returns just long enough to remind me of that first Pepsi after surgery. I now savor flavors — and an occasional soda.

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

Acoustic Neuroma Lessons – Eye Health

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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. . .

Caregiver Tip – Time is the Ultimate Gift

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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.

Brain Surgery – Recovery takes time

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Yes, recovery from brain surgery is an uphill climb that’s exhausting, but it’s worth the trip. For those of us who have experienced having a brain tumor, life is precious. Each life event that we experience post-treatment is a gift. When I found out I had a brain tumor, it wasn’t my past that passed before my eyes but my future. Would I be here for my daughter’s wedding. Would I meet my grandchildren?

Our brains are vulnerable. Our brains map who we are. Having it invaded is very personal. Recovery is a steep climb for every one – a hike up a hill for some and a mountain climb for others. All we can do is take it a day at a time, experiencing progress in some areas and setbacks in others.

There are incredible support systems with people who are happy to share information. While our families step in to provide immeasurable support, we also benefit from one another. There are amazing communities of people in local support groups, on Facebook, and in forums that have a unique sense of humor and compassion. We have learned to laugh at life even as we are in pain. We can make jokes about the awkwardness of not hearing many things. We share tips for keeping a dry eye healthy or a compromised balance system functioning.

What I learned as I’ve healed is that, as in anything, the future “you” is still undefined. Recovery takes time and patience. We are in a society that expects instant results. I expect instant results. Instead I’ve frequently felt like a human pin cushion. I’ve had more needles in me in the past five years than a porcupine has twills. Through it all though, I’ve connected with family and friends in ways that I otherwise would not have.

It is my journey of LIFE, but I’ve got great company.

Traumatic Brain Injury – Invisible Disability

 

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Brain surgery was the easy part. I slept through it. The moment I woke in incredible pain is when got difficult. Despite the intricate skills of two brain surgeons, I was now suffering from a Traumatic Brain Injury (TBI). I didn’t recognize at the time that I was entering the “in-between.” I was stuck between who I had been and someone I didn’t know yet.

Brain surgery left me with the recognition that I’m not who I used to be. I do know that I am far from alone. TBI effects brain tumor patients, accident victims, and soldiers fighting for our country.  With advances in the medical community, more people are surviving traumatic medical events than ever before.  A mystery to the medical field, TBI leaves many unanswered questions.

I struggle with my desire to deny disability’s grasp on my life while continually having to adapt to its grip. Chronic, oppressive head pain is disabling, but it can’t be seen – or proven. Navigating the “in-between” is a new reality.  I am fortunate to have my mental faculties, but am exhausted by head pain, hearing issues, and facial therapy. Yes, exhausted by the extra effort my brain requires to sort desired from undesired sensory input.

Adrenaline gets us through what we need to live but then our brains demand down time.My “Job” is now seeking answers, treatment, and relief. Everyone has their own journey through the forest of the unknown.

Once trauma happens to the brain, remnants cling for years or life. However, it needs to be noted that “living with TBI” includes the word “living.” I had heard there would be a “new me” but I wasn’t done with the old one. In pursuit of contentment, I eventually accepted that the old me was gone and acknowledged the new one. To my surprise, I found joy. I wish I had known before I fought change so hard that there are things to cling to and others to let go of. I wish I had known to accept, grow, and live. For me it was the loss of a career yet the gain of writing. The loss of speed yet the advantage of measured observation.

The experience of having an Acoustic Neuroma(AN) and resulting traumatic brain injury is very individual even as we seek camaraderie with others.  Common threads that I’ve seen in AN people are the choice of life, a decision to share humor, and nonstop perseverance. That strong common thread compels us to move forward without being dragged back any more than we have to be.  We continue to laugh and love.  Even in this new dimension.

 

Polar Vortex and Acoustic Neuroma? Do I give up yet?

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I’ve always found it difficult to navigate the tricky line between giving up and pushing on. I do know and will even acknowledge there is a time for both. I learned today what a polar vortex and acoustic neuroma brain tumor have in common.

Today I had to be in Grand Rapids, about an hour north, for a doctor’s appointment. The news said to stay off the roads. Google Maps said traffic was fine. My look out the window said “so-so.” My head complained. I had to make a decision once the appropriate departure time came – after calculating travel time with extra bad weather minutes added in. Always one to push things to the limit, I headed out. 

It was blowing with spots of snow as I headed out on the north-south highway. I could see the wind gusts whirling across the road because each picked up stray snow from banks along the side of the road. I drove carefully — my hands at ten o’clock and two o’clock and the speedometer below the speed limit. I always ensured a good bit of distance between me and other cars because I know that, as in life, it isn’t always our direct action that brings accidents, drama, and unwanted events.

Suddenly, though not surprisingly, traffic stopped ahead of me. We all crept along, blinking tail-lights for those behind us as a warning to slow down. When we reached an exit, some very yellow firemen had the road blocked off with their very green emergency vehicle with red flashing lights. We were all forced to exit the highway. It was shut down.

I didn’t have a option to continue on the same path.  I also didn’t have an option to just stop and give up.  I DID have a choice to to go north or south once I was off the highway.  Should I head home or keep moving, via an alternate route, to my appointment?  I had input.  I called Kayla (hands free) and asked her to check the map. Her input?  “Mom, just go home.” I called the doctor’s office to tell them that I didn’t think I could make it. His input was that he didn’t see anything on the internet map, but I could change my appointment. It was up to me. I could ask God for His direction, but it was me who had to turn right or left. I had to turn when I reached a T in the road (or annoy a lot of cars behind me).

For once in my life, I gave up. I reluctantly, but very carefully headed south. However, I was now on a country road and found myself in a complete white-out. I turned on my emergency flashers and carefully watched ahead as well as behind for other vehicles. Even though I had acknowledged that my day had changed, the battle wasn’t over.

Eventually, I found myself out of the snow and safely home. I still wasn’t happy about relinquishing control to mother nature, but it was clear that I made the right decision when I heard that the swirling storm had closed multiple roads. I accepted getting safely home to rest up and reschedule for another day.  I am hearing whistling, violent wind and watching trees wiggle and bend even as I type this.

Acoustic Neuroma brain tumors are like that. We don’t ask for the storm that they bring. We try to keep going. Each person encounter’s their own version of the storm. Someone was in a vehicle ahead of me in the accident that closed the highway. They were “worse off than me.” Someone took the detour and kept going. They eventually reached their destination – or encountered more delays. It may have only been a bump in the road for them. Those folks were “better off than me.” However, everyone on the road today was effected by the storm. Everyone in the Acoustic Neuroma world, including family members of AN recipients, is effected by the storm.

I’d never heard of a polar vortex until this winter. I had never heard of an Acoustic Neuroma before learning that one was camped out in my head. It didn’t mean they didn’t exist. It only means that they hadn’t been drawn to my attention on my journey.  

When do we give up on finding treatment for head pain, or dry eye, or facial paralysis issues? How do we adjust to and find ourselves apologizing for our single-sided deafness in noisy settings? When do we turn around and go home for a while? When do we head out again on our life’s journey? I don’t have a precise answer – only that we have to keep moving forward at whatever pace is right for us individually.