Tag Archives: head pain

Acoustic Neuroma – Facing the Un-Face-Able

Red flower

My latest ANA Ambassador contribution about facing disability is now up at


Here it is directly:

I had been told to expect a few miserable days after brain surgery, but it would get better. When I woke, all my energy was immediately sucked up by survival and pain management. It was a full time effort to keep my sanity (which is still up for debate) as I dealt with pain, new single sided deafness, a face that was half immobile, an eye that wouldn’t close without assistance, and balance that required a cane and supervision on stairs. Brain surgery recovery, for me, was much more than I had allowed myself to anticipate.

What I learned, when my body veered sharply from the expected and ideal recovery path, is that I had to become my own advocate. It was only I who could speak up for what I needed. Nobody was there to tell me how I felt. Nobody could tell me when I would feel better. Only I could determine what my body was capable of.

I had arranged to take three months off from work. The doctors had predicted that I could return to work part time after six weeks, but I pushed for a longer recovery because I had a job that required weekly travel and 120% presence. I was relieved when the doctor agreed on 3 months. I felt that I would feel normal in six weeks, and have six more to really heal and feel rested and healthy before returning to work.

My surgery was November 3, 2008. I spent 8 days in the hospital and then had family living with me for a few weeks. I was self-conscious of my half paralyzed face, but knew that I would find the inner strength to get past interacting with people. In my home, single sided deafness was reasonable until my first trip out in public where I learned about the challenges of SSD in a noisy setting.

The most challenging issue was my head. Day and night I had excruciating head pain. At two months out, I had put all of my energy into healing. I had rested for ridiculous lengths of time. However, I had to acknowledge I was not following the predicted timeline. I was still struggling to survive. I was not able to get through even one day without total exhaustion. I was not going to be able to return to work. Just acknowledging that fact to myself was difficult. Initially, it was like holding in a secret that was inevitably going to explode if I didn’t speak up. It was not enough to follow familiar patterns of the past by pushing past obstacles to get what I wanted. If I were to deny that I could work, it would be painful and embarrassing. I had failed to fulfil my supporters’ predictions of success!

As I pondered, felt sorry for myself, and tried to work around the biggest obstacle I had ever faced, I realized that I could not will it to happen. I could not force my body to return to normal nor think my headaches away. With physical pain, exhaustion and depression, I knew that I wouldn’t be able to focus on work and successfully return to my career.

So I started to say it out loud to family, friends, and then my colleagues. It was difficult to say the words, “I am not going to be able to return to work.” I had to lift my hands and admit defeat. That was not who I was. I met my deadlines regardless of what it took. Now, for the first time in my life I was having to admit that I wasn’t able to overcome an obstacle.

I told myself I wasn’t giving up, but just taking some extra time. I filed for long term disability, believing I merely needed a few additional months to allow my body to rest and heal. One of the disability company’s requirements was that I file for social security disability, which I laughed at. There was NO way that I was THAT disabled. I compliantly followed the process, convinced that it was going to be wasted effort because by the time my application was processed and rejected I would be back to normal.

There was something in my heart that cracked the day that I found out I was disabled enough to qualify. My application was approved the first time, which I had heard was rare. I had to find the energy to demonstrate disability when I was having trouble fighting to get through each day. Head pain is hard to prove, but it is also hard to disprove. It is an unmeasurable and miserable state. I dug deep and did what I had to do to take care of myself.

Well, months turned into years and I am still dealing with head pain. However, somewhere along the way, I found peace with the new me. I feel compassion that I didn’t know before. I have been given insights and respect for living in chronic pain while staying pleasant and present. While searching for meaning for all of this, I discovered I could still contribute to the world – just in a different way. I could write about my experiences, feelings, and hope. I could connect with people who felt misunderstood. I could express myself in painting where it didn’t matter if my hand has a tremor, or if I had to quit mid-project for a nap. I could find joy in my connection with others.

It all started with knowing my body and being my own advocate. Only we can take care of our precious selves. Only we can speak up for what we need.


The Holidays – Two Sides of a Coin

half and half

Yep, here I am I am on the holiday bandwagon saying THANKS. As an acoustic neuroma recipient, there are also things that I admittedly am NOT thankful for and willingly admit it. So, in the spirit of making lemonade out of lemons (forgive ALL my intentional clichés), let me see how many things I can turn around.

  • I am NOT thankful for getting a brain tumor, but I AM grateful for many lessons I’ve learned since my diagnosis.
  • I am not thankful for daily headaches, but they have helped me learn to live fully on days that are less painful. I have learned to observe more and appreciate non-participation at times from my quiet corner of a noisy room when my head is screaming.
  • I am not thankful for facial paralysis and synkinesis, but it has helped me focus on people instead of their appearance. I understand what it is to feel different on the inside than what I can express on the outside. I’ve learned that body language is much, much broader than a smile.
  • I am not thankful for losing the hearing in one ear. I am thankful for the hearing that I do have. I have learned to let go of control in some situations (yes, I have been known to be a control freak). I now enjoy seeing others lead and find it relaxing to let others communicate. I’ve learned to trust the people in my life to let me know when I didn’t hear something important, casually and without making it awkward by gently repeating what was said.
  • I am not thankful for having a dent in my head. I have, over time, learned to chill more and relax tense muscles. Inhaling and exhaling are underrated. I pull my shoulders down and back, releasing tension that builds on itself in my body. I’m amazed at the difference I feel almost instantly upon a posture change.
  • I am not thankful for tinnitus. It isn’t fun to have nonstop buzzing in my head that varies with eye movement. It is not fun to have roaring in my head after braving a concert, movie, or noisy restaurant. I have learned to be thankful for things that peacefully block the noise somewhat. Natural sounds of waves bring peace and solitude. Birds and rustling in the woods is pleasantly distracting. I find it interesting that the best sounds for blocking tinnitus are sounds in nature.
  • I am not thankful for the independence that I lost. I appreciate regaining what I have and value freedom. Conversely, I’ve learned that dependence is sometimes a gift for both parties. I’ve learned to better appreciate relationships and people in my life.
  • I am not thankful for the emotional upheaval and depression that I’ve had to fight through. While deep in despair, I remembered what happiness felt like and fought to find and embrace joy again. I treasure smiles, giggles, and laughing.
  • I found nothing about a brain tumor to be funny despite nonstop jokes that I made when diagnosed. However, I’ve learned to laugh at myself and not take things so seriously. Really, not hearing someone is no reason for humiliation or embarrassment. I’ve learned to not pretend to hear what I didn’t and simply ask for a repeat of the question.
  • I was not at all thankful to end my career early despite years of wishing (like most people) for early retirement. Brain surgery is not a good way to get out early. I did learn though that I have a passion for writing and it is something that I can do when able, and think about when disabled by pain or fatigue. I can connect with people in ways that bring community and mutual benefit. Even though I don’t do what I used to, I have been able to find a new place in life.

I could go on and on, but won’t. Overall, I’m recognizing that life truly is a gift with no guarantees. While issues following brain surgery are real, I’m alive to experience more joy and human connection than sorrow, discomfort, and isolation.

Life After Acoustic Neuroma – A day with Headpain

singing paulo

I wake, still for a minute. I slowly stretch and turn my head on the pillow, all in drowsy gratitude. Suddenly my head is struck with pain faster than a cobra’s attack. Eyes pop open, my neck stiffens and the whole right side of my head tightens. There’s nothing like a postcraniotomy headache. It will be a bad head day.

On a bad head day, my brain feels raw inside my skull as if there’s no padding between my brain and skull. Nature provides padding through cerebrospinal fluid that flows around the brain and spinal cord, but on a bad head day I feel like I’m running on empty.

After taking a few slow breaths, I slowly ease out of bed, placing my feet firmly on the floor, raising my head and body in slow motion. I sit for a minute and breathe steadily. In slow, deliberate steps, I stand, wait for my balance to adjust to the new day, and slowly head to the bathroom. Moving too fast will freeze my brain in a lock that stops all movement. Most people are familiar with that frozen brain feeling when you drink something cold too fast, times ten. I have learned to live with what is called “Wonky Head” by acoustic neuroma patients.

Like a drunkard, I head to the bathroom, feeling like I have an incredible hangover. Surgery destroyed my balance system, atrophying my right cerebellum, requiring my brain to re-calibrate itself in the morning. Between the bed and bathroom, like pinball in slow motion, I touch my dresser to the left, the wall to the right and then stop, gripping the bathroom door jamb with both hands. Touching things makes me feel more grounded.

Weather changes could be one reason for such a bad head day. I am quite sure the doctors inserted a barometer in my skull after they opened it with their fancy diamond drill bit. I hold my head, as if it would help.
Eventually I drag myself to the shower. Hot water relaxes my head so I empty the hot water heater.

I slowly dress without bending or allowing my head to drop below my heart. The resulting head pain would send me back to bed for at least a half hour. If I drop my hairbrush on the floor, I stare at it like it was a hundred miles away. It isn’t worth bending for. I reach for another brush. The first brush could stay on the floor until a better day.

Eventually, I feel my head relaxing. I never take it for granted as I feel together enough to take on the rest of my day. For my brain’s sake, I always hope to avoid sneezing and coughing that will cause an immediate setback.

The next morning it begins again. I awaken and cautiously move, hoping for a better day. Perhaps I would feel up to picking up that hairbrush today.

Traumatic Brain Injury – Invisible Disability


IMG_6026 c

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


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. . .

Lessons Learned From Brain Surgery – Talk

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..