Category Archives: Lessons Learned

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 #3

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IMG_6519 cThe 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.

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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DSCN4229 eye

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. . .

There’s more than just the writer. . .

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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.

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.

 

Lessons Learned – Brain Surgery is a Unique Experience

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scar

Each body, tumor, and outcome is unique. Each scar following surgery is different. Some are a lovely “C” circling the ear. Some leave a creative “S” trailing down into the neck. Mine is a cornered two sided triangle, which I thought was appropriate for my scientific background. Some have a scar above the ear, or none if the surgeons went into the ear directly. It’s all in the surgical approach as well as the approach of the surgeon.  I recall the residents talking about incisions and how they are the recognizable signature of surgeons.

As with our scars – or lack of scars – each aspect of our experiences are different. We like to say that we are as unique as snowflakes.

Some people skate through the experience of Acoustic Neuroma diagnosis and treatment. It is a stop on their journey rather than a radical branch in life’s road. Others are debilitated and their life is changed forever. Many of those who were changed band together in support groups to share and encourage. I have seen a unique strength and humor in each person, whether in the status of Watch-and-wait, post-radiation, or post-surgery.

Symptoms prior to an AN diagnosis vary a lot. I found out that I had a brain tumor growing in my head for ten to fifteen years. It had grown to the size of a ping pong ball, just short of 3 cm. I had no bothersome symptoms, although in hindsight I recognized signs.

For example, my facial nerve was flattened like a ribbon across the growing tumor, and I started to experience mysterious symptoms. The size of my eyes was different in pictures. Very odd, but how would one link that to a brain tumor?  I had a strange sensation on my face. My right eye was watering excessively. I felt like I was drooling on one side, but felt nothing when I would check the corner of my mouth.

Balance is a common issue that can lead to a diagnosis when one finds them self dizzy and possible falling. However, for me, the tumor grew slowly and my left side was able to take over my body’s balance issues. I have had some issues after surgery, but the doctors were surprised that I had not experienced issues prior given the tumor size.

Hearing loss and tinnitus is what brought me to the doctor, while for some it isn’t an issue. It depends on how much of the tumor is in the skull pushing on the brain and brain-stem versus how much is growing into the ear canal. I was expecting a “nothing can be done about it” diagnosis of aging, but had learned of Meniere’s Disease and had heard of issues with inner-ear bones. I was shocked to hear brain tumor.

And then there’s the journey after diagnosis and treatment. I’ll continue to address each of those areas as they each warrant a complete post.

Unique is the word of the day.  That is what brings each of our stories into color. . .

Lesson Learned From Brain Surgery – The Power of Caring

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DSCN4903Lesson Learned from Brain Surgery – Never underestimate the power of caring

In the hospital following surgery, I learned the power of caring and compassion.

Even through my fog, I was keenly aware of how kind, attentive, and caring everyone was. The nurses were used to seeing such carnage and told me how I was doing at each stage of recovery. They were experienced enough to judge.  They would pause in the middle of their hectic shift to talk, encourage, or put a hand on my blanket.

Kayla always pushed me to do one more thing. Dad was there to talk or to crack a joke. They saw me, and not the horrible, ragdoll me.  Kendra called from Europe and sat on the phone with me, caring through the air waves.  My brother and mother called and encouraged me and reminded me that it was a good thing to still be alive.

Sorry to be a bit gross, but I was dizzy after having my brain jostled and was sick frequently.  All people involved with my care accepted the normalcy of handing me a barf pan or cleaning up what missed it. I can’t describe how caring and gentle that was – as strange as it sounds.

Lessons Learned From Brain Surgery – Talk

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The Hand

People will get sick of hearing you talk about your limitations. You will get sick of yourself if you don’t adapt and focus on what you can do instead of what you can no longer do.

Depending on your age, you may remember the phrase “talk to the hand.”  it was popular in the 1990’s and was in many television shows and movies.  It implied that one wasn’t listening so you might as well talk to the hand that is in your face to hold you at a distance.

Talking about Acoustic Neuroma experiences is a tricky topic.  While it is important to focus on positive and not negative, there is value in talking about your experience:

Camaraderie is important. Finding others who experience this is helpful.  Friend and family support is critical to our well being.

Shared understanding.  Caregivers and family need and want to understand how life has changed for us following brain surgery.  Letting them know how they can help you may be difficult but it pays off in the end.

Authenticity. We need to talk through the changes and gaps between who we were and who we are now.  We have to come to terms with the “new me.”

We are our own advocates.  While the burden of this entire experience is heavy and there is nothing we would like better than to relinquish dealing with doctors, hospitals, jobs, disability as well as the world in general – we need to find the strength to continue on and stand up when we need something.  Don’t accept being brushed off if there is an issue.

Serving others.  People who are newly diagnosed with acoustic neuromas need the support of those who have gone through the process of treatment selection, possibly treatment, and likely changes.  Being available to others reassures them that they are not alone in outcome issues.

When is it too much?  When is it time to change the subject?

When you feel yourself cycling and repeating yourself.  There is a point where we need to accept where and who we are.

When you are feeling sorry for yourself.  While some self pity is actually a good thing.  We can all feel sorry for ourselves for limited periods of time and that’s healthy.  However, we cannot let a brain tumor define us.

When we begin to focus too much on what we cannot control.  Life changes in many ways that introduce us to paths that were unexpected.  “It is what it is.”

We are dwelling too much on what we lost.  Life is a moving journey.  We would not want to stand in one place forever.  Just like we change some people in our lives over time, lose or change jobs, and live in different homes – going back is not an option.  Just like a favorite pair of jeans that rip out and we finally reluctantly discard them – we are now finding ourselves in a new place in life.  Moving forward is our only option.

We give up after a failure.  One thing that we as acoustic neuroma recipients have learned is that we will have days that are great followed by days when we can not move, or times when we lose balance, or even yet another time when we have to explain to someone that we didn’t hear them because we are deaf on “that side.”  Over time, we learn new adapting methods that ease those future “failures.”  We need to find a balance between accepting and pushing.  Only we know our bodies and can make that call.

Acoustic Neuromas are each unique.  Like snowflakes, we each have our own experiences and outcomes..