acoustic neuroma, balance, jamis AN, vestibular schwannoma

post surgery, what to expect

Post-Surgery

Its been a while since I posted anything, now 5 weeks post surgery. I have had some great days, always followed by tough days. Most importantly, I am no longer awake the majority of the night, so my writing hours are gone. Today’s post will cover the post surgery experience.

Again, my blog objectives is to share my experience for anyone who may also have #vestibularschwannoma or #acousticneuroma. I believe that much of my success was due to stories that others have shared. (The most important learning, never ever search for “brain surgery scar JPG”, nothing good comes from that search).

The Honeymoon, weeks 1 and 2 post surgery

The first few weeks after surgery were not as difficult as I expected, setting a poor precedence for the rest of recovery. First two weeks, I was walking 4+ miles/day, dealing with some headaches, lots of white noise and general tiredness. I thought that if the progress remained steady, I would be running 5 miles / day by the end of my leave. That did not happen.

My amazing work tribe took care of meals for two weeks (seriously amazing), and my parents waited on me hand and foot. They also could tell I was getting tired because my left eye would get swollen. I never felt anything on the left eye (the surgery was the right side) but a few minutes late my right eye, face or head would bother me.

I was pretty productive during this time, keeping busy with ‘tasks’ that did not require much thought. Sorting all pens/pencils, organizing photos (this is NOT complete), organizing things in general.

Doctor appointments went well, they said I am in the top 1-2% in terms of recovery, and our next check-ins are in March when I have healed, at which time I will have a MRI and sort out next steps for areas like hearing and white noise. (This should have been my warning).

(insight into the recovery, I have to stop typing now because my eye gets very irritated if I type too long).

The Reality Sandwich, weeks 3-5 post surgery

Progress slowed, some things went away and other things popped up.

The doctor said that somedays you will feel great, and the next few days you will not want to get out of bed. This is true, it happened. Following is a run down of the experience. This is different for EVERYONE.

Area Month Pre-Surgery First 2 weeks post surgery Weeks 3-5 post surgery
Fatigue High fatigue, either a nap or 8:00 pm bed time unless late conference calls. Hey, I had brain surgery. Tired all the time, lots of nap, general exhaustion due to the medication and sleeplessness at night. So very tired. made me very nervous for returning to work and frustrated. Could walk 2 miles one day but could not exercise at all for the next 3 days.
Headaches Head felt like it was a balloon blowing up, a few times per day. Eventually took a steroid that addressed it. Headache still there, when I stopped the steroid the headaches came back. Extended the steroid a week and headaches became manageable with OTC meds. Worst headache of my life during the hurricanes in NC. BUT it only happened once. Now, easily manageable with OTC meds.
Right eye issues (surgery side) N/A Feels like it has grit in it when I get tired. Tells me to rest. Same as 2 weeks with increased frequency.
Left eye issues (non surgery side) N/A Doesn’t hurt or irritate, but swells and others tell me to lie down and rest.  Use OTC eye drops a lot. Same as 2 weeks.
Earaches (surgery side) None Earaches when tired. Same as 2 weeks.
Earaches (non surgery side) N/A Earaches when tired. None
Balance in normal circumstances I thought I was old! Stood in the back during yoga because I will fall. I spent time over the months leading to surgery doing a lot of yoga and it was better than it had been in years. Dizzy if my head moves at all. Unable to do any yoga without holding on. Able to walk well with concentration however. Balance gets worse when tired. I look really drunk when I walk Able to do short yoga balances, but risky. I look tipsy when tired.
Balance when moving head quickly, with eyes closed, etc Not an issue Dizzy, cannot keep any balance if my eyes are closed. If rested, doing better. Improvements when doing Physical Therapy.
Taste N/A Pineapple tastes weird. When I am tired, things start to taste off. I also have a tinglefeeling on my toungue, like I did pre-surgery. I think its tied to my facial nerves getting irritated.

Its not a very exciting write up, but covers the 5 weeks post surgery.

acoustic neuroma, balance, jamis AN, vestibular schwannoma

The Surgery

My parents came out to North Carolina from Seattle to stay with me, my brother came from St Croix for the day/night of the surgery. And, of course, my husband slept in the freezing ICU after the surgery.

Day of, my family and I met with the Neurosurgeon, Dr Ewend and ENT Surgeon, Dr O’Connell both with UNC Chapel Hill, and a small army of their brilliant team members. Told everyone my name, birthdate and why I was there 100 times.

(At first I used the slang, removal of an acoustic neuroma, but I got fancy and said “removal of a vestibular schwannoma” and the approval in the eyes of the medical staff made that my favorite phrase. I also made sure that they would take breaks and have snacks. Need them at their best!)

The surgery duration depends how sticky the schwannoma is and how I respond during the surgery. If its longer, that means that my brain is not swelling much and they are able to remove more tumor. Translated means – don’t panic if this takes a long time. We also discussed prioritizing the facial nerve over hearing.

The next thing I knew, I woke up in ICU. That first night was tough. The surgery was 10.5 hours, and I laid on my left side for those hours. The pain in ICU was my hips from lying on the side for so long, followed by my neck. But I forced myself to make small adjustments through the night, moving and activity is important it got better. Plus drugs.

(I had a tibular fracture a few years ago, receiving a bone graft & plate. Long story, but it was trying to do a Janet Jackson dance move on a chair, that apparently I don’t know how to do. The pain / discomfort from this surgery was CAKE compared to the that procedure. Easy peasy.)

The GOOD: Physical Therapist did take me for a walk down the hall and – if I say so myself – I did great! I walked fine, good posture, a bit shaky of course.

The BAD: I am a fainter, I keeping getting told I have “vasovagal syncope”. My resting pulse is low 50s, and when I respond to some trigger (usually medical) my blood pressure drops and I faint.  After the walk down the hallway, as I was heading back into the bed I fainted and came to with 10 people surrounding me.  This is not new, but it really concerned them. We had a great consult with a doctor and went over family history, they all agreed this is just me.

(I asked “what is the pulse rate I should be concerned with?” My husband said “zero”, the doctor said to him “I want you on my team”) 

The WACKY: I had initial eye issues, where I saw ‘stacked double-vision”. If I looked down the hospital hall, everyone looked like they had 4 arms and 4 eyes. Joe showed me a picture of my scar and I thought for a day or two that I had TWO scars, but it was just my vision. It is better now and I only have one scar.

The experience of my family: They sat in the waiting room for TEN and a HALF hours during surgery. They got nervous (as did friends & family waiting for update). Dr Ewend let them know that is was a good thing. They could work on my as long as my brain was not swelling, which meant more removal of tumor. All in all, 97-98% of the tumor was removed (CT was done the next day to verify).  VERY successful.

(It took 1.5 hours to drill a hole in my skull, which they then covered with mesh after. All the guys who use power tools found that interesting.)

I moved to a room that night, initially with some dread. As I was wheeled into the room, the other patient was in a lot of discomfort. After listening for a while, I learned she had broken her neck a few months ago, it wasn’t healing so she had surgery to fuse some of the bones. She was in so much pain. I shuffles over and held her hand for a while, it reminded me of when I had my knee done and how tough it would be to be alone and in pain. Made me think about how we each have different tribes of people supporting us, and even as a stranger you can make a difference.

The next day, another Physical Therapy test (up and down stairs). Two hours later they discharged me. And I went home.

acoustic neuroma, balance, jamis AN, vestibular schwannoma

The Diagnosis and Navigation to an end game

The formal diagnosis happened about 4 weeks after I set up an appointment with my general physician. My amazing husband was with me every step of the way.

This post is one of the key reasons why I feel compelled to write this blog, hoping to help someone going down this same path. If this is too long, read here: PREPARE PREPARE PREPARE, WALK WALK WALK, VISIT FAMILY.

Diagnosis Timeline

  • My general physician listened, did some tests (including any possible blood test imaginable) while also referring me to the Neurologist – end April
  • Neurologist appt, some tests and ordered a MRI – Early May
  • Two hours after the MRI, Neurologist called, informed me it looked like a benign vestibular schwannoma and referred me to a neuro surgeon – Mid May
  • Met with neurosurgeons offce who explained more, showed me the MRI results, discussed options and referred me to the ENT Surgeon who will work with the Neurosurgeon (they also worked together off line) – Early June
  • Met with ENT Surgeon who spent time verifying preferred treatment, possible side effects. – June
  • Surgery scheduled for August 12.

Treatment Decision

The decision regarding treatment was relatively easy, and I felt in full control. Post MRI results, Google and I became best friends. I read many testimonials, joined the Amercian Neuroma Association and read literature, turned to my brother who identified a few very helpful papers written for doctors.

If it was treatable via radiation, gamma knife, I was ready. But I preferred surgical removal. The symptos were impacting my day to day even more, and I realized that if I had it surgically removed, and it returned over the next few years, I could turn to a less invasive follow up.

The ENT- and Neuro-surgeons each explained choices, without any pressure to silect one vs the other. I expressed my preference for surgery and each looked a little relieved at that point.

What I would do the same

After each referral, I asked for expectations for a call back / appointment and the next day, made the call myself. I was open that I had a lot of anxiety, and wanted to schedule things asap. (do the same, I suspect this cut a month off the timeline)

I expected a much quicker turn around and when it took 3+ months to schedule the surgery, I felt maybe my schwannoma was very small, not a big concern and that I was being weak, letting the symptoms affect me too much. (I did get over the ‘got to be tough” mentality, such a relief)

Use the ‘email feature’ with my physicians to ask any question I wished. I always received answers in return, quickly, and at one point it highlighted I was having issues which needed some medication, and helped immediately prescribe that to make it through the last weeks.

Shared the diagnosis. This is a highly personal decision, to share or not share. I lead a large, global team at work of a few hundred people. I choose to cancel planned global travel, and was open with the team that I would make a few work changes. See below. I also leveraged my ‘tribe’ at work, current and past collegues and friends.

How I Managed it with Work

As noted above, I stopped work travel in June. I set up my planned proxy when out, and we worked together the next few months to put him in the leadership role while I went through this.

I worked remotely more often. Saving two hours / day in travel time was very heeded. I had to take naps around 5 in the evening, if I was going to be doing late evening calls with my India or China teams, for example). remotely for most of the next few weeks.

One of the benefits of where I work is the capability to work remotely, thought we prefer / encourage in the office due to the benefits of being face to face. As a leader it was tough to be remote but the time I saved helped me be a better leader and prepare for the surgery. I could tell the different in my deliverables when I worked shorter days, for the better.

Top Four Work Things

  1. Let go of small things which would eventually work out, freeing up energy for the larger more strategic work.
  2. Delegated a lot more – which is the control freak in me letting go, it was hard at first but got easier.
  3. Realized that work would always be there, the team would be ok without me and embraced the opportunity for the team to step up and show what they can do. This will make my return and overall team performance even more awesome.
  4. A hard decision was to many of the extra things, such as ongoing mentoring or sponsoring of various programs that I do. That saved me about 6 hours / week, but was the toughest decision to make.

Preparing for the Surgery

Once we decided on surgery, I realized I had to be as healthy as possible, to make the recovery easier. I set goals, in partnership with one of my best friends who was also trying to be at her best physically.

My Administrative Assistant kept my calendar clear, allowing me so schedule time to be more fit as well as better at work. Brisk walks would clear my head every day, and make me a better employee / leader.

Weight and exercise: I had been gaining weight steadily for the past 18 months, 11 lbs in a year for example. I would diet, walk, agonize but could not stop myself. In someways, I think I was eating to comfort myself, as my body was fighting off weird symptoms. I removed the ‘weight’ factor and focused on fitness.  I also just turned 50.

Investment:  Invested in an Apple Watch and the Aaptiv app to ‘gamify’ things for myself. Also did a few months of a healty eathing service (Sunbasket) to simplify meals and eat healthier.

  • Walked 5 miles per day. Started the day with 3 miles and added smaller walks whenever I had a break or at night.
  • Did 1 core workout from Aaptiv and 1 yoga workout from Aaptiv each day.

My balance, strength, blood pressure and resting pulse improved. I also lost a few pounds, it was visible in my face for example. I believe this is one of the key reasons why I was able to recover so quickly. Within 1 week post-op, I was doing many short walks reaching 10K steps/day.

The Boring Stuff: Updated my estate plans, moved all mail to hardcopy vs soft (moved it back afterwards), completed any pending tasks such as vet appointments, car maintenance, etc.

Visited my Family: Did a trip to Seattle to see the family as well as West Virginia. It was very important to spend quality time before the surgery.

 

 

acoustic neuroma, balance, jamis AN, vestibular schwannoma

Tough to Explain Symptom: Wonky Brain

The brain is an amazing thing. Each time I grasp a new understanding of how it works, i open a wider understanding of how little I know.  As well as how marvelous we all are.

Here is what has changed, which I file under wonky brain, and is different for every human and every Vestibular Schwannoma patient. My life for the past 6 months…

  • Ready for bed at 8 pm
  • Drink ½ martini and feel hungover the next day, as if it was an all nighter at Club 54
  • I found myself taking all the credit for things I had nothing to do with. It is an honest affectation (and might be the coolest of all)
  • Feel hungover every afternoon (non scientifically proven theory that this resulted in weight gain of 20 lbs over 2 years. Hangover = Eat Comforting foods)
  • General slurring when tired
  • Constant exhaustion

This is what has taught me the most through this event, and I am grateful that I learned:

  • Recognize and manage energy levels
  • A 10 minute walk is a reboot for the human soul and physical capability
  • Say no
  • Work / tasks will always be there, I dont have to do it right this instant (and sometimes….never have to do it)
  • Value, honor, love all that I have – instead of wanting more. A mindset of abundance vs deficit

My “i am not a doctor or scientist” theory for Wonky Brain is about the added work my brain needed to do. All of the normal thinking and information pathways were turning into traffic jams. What was a nice clean open road to action 3 years ago, had to jump over, under and around this tumor to get completed. Feel free to tell me in the comments section how nutty my made up theory is….

I now introduce two of my most favorite books ever (excluding Harry Potter of course):

BrainHabit

 

acoustic neuroma, balance, jamis AN, vestibular schwannoma

Early Symptom: Facial Numbness & Tingling

This is the symptom that made me pay attention. I was sitting at a conference, in WA DC, learning about pay equity, the law, and so much more. And then I thought I was drooling. It felt like going back to work after the dentist, and feeling that drool was dribbling down the face…when really it was just the numbness. That happened March 12, 2018. I made a note, because it was so unexpected.

Over the next few weeks I felt different, but couldn’t put my finger on it. In the mornings, my mouth felt like I had taken something…but I wasn’t groggy, didn’t have dry mouth; difficult to place.

I finally was able identify a feeling of numbness, tingling. It was not consistent, I could go a week and feel great, or it could come at me every day.  In retrospect, it was related to my stress / rest levels.

At the same time, I was having eye problems (a total red herring). Through this, I became less planful and, when traveling, quit packing my makeup remover. I started using hotel lotion when traveling, and my eyes would turn bright red, the lids were swollen, they hurt.

Screen Shot 2018-08-28 at 11.25.53 AM

It all came together. In May, on a business trip, my eyes were out of control red, my face hurt, I was losing coping skills….and I did the only thing a responsible 49 year old professional would do, called my little brother. He also is a doctor, and I knew he would not allow me to blow this off.

acoustic neuroma, balance, jamis AN, vestibular schwannoma

Early Symptom: Balance

I fall a lot, and have for years. I am the gal in the yoga class that falls for any balance move, no matter how hard she tries. It turns out that, over time, my balance nerves on the right hand side have been swamped by this schwannoma. The balance nerves on the left hand side have been compensating over the past few years.

At the time of surgery, my surgeon shared that the balance outcome was not completely known, it all depended on how damaged the vestibular nerve was.

  • If minimal damage to date, I could expect significant balance issues & vertigo after surgery. I would have a tougher time adjusting, as I had not yet compensated for loss of balance.
  • If a lot of damage to date, I could expect a short period of dizziness and vertigo, which should fade quickly as I had already started to compensate.

At 2 weeks past surgery: the outcome is very positive. My balance is already close to what it was 6 months ago.

How I prepared: I was aware this was a big risk, and spent time over the past few months getting physically ready for the surgery. I have been doing yoga daily, with a breath and balance focus. My balance was better than it had been in years, but it took an investment of time, every day, to get here.

Long Term Goal: I still have work to do, and will continue to make yoga part of my daily life and practice. This is a combination of strength, focus and effort.

Update: August 27. I had my first Physical Therapy appointment yesterday, and learned much more about balance. Turns out there are 3 areas to rely on for balance:

  1. Vision. With open eyes, using vision, is where I do my best.
  2. Feel. My assigned exercise homework is to stand on an unstable surface, maintain balance, with eyes closed. My area of focus.
  3. Inner Ear. This is usually the boss of balance.

I look forward to making balance obey my beck and call.

 

Balance

 

 

 

 

 

acoustic neuroma, jamis AN, vestibular schwannoma

The Journey Begins

Thanks for joining me! We all have stories. I will tell mine, lets see where it goes.

I was diagnosed this spring with a benign “vestibular schwannoma” (commonly known as an auditory neuroma).  This is one of the more common brain tumors, about 1/10,000 people have them.

It is not new – I have had this for years, but it hit a tipping point in Nov/Dec 2017. I could no longer attribute symptoms to just aging. After many doctor appointments, and finally a MRI with contrast, it was very clear that this tumor was taking space in my head.

The last few months have been about coming to peace with how I have changed, what my new normal is, how to prioritize what is most important in my life and what really matters, embracing that amazing tribe (near and far) around me.

More about the tumor, with the caveat I am NOT a doctor (but I google well). This tumor develops on the balance and hearing nerves in one’s inner ear. It typically presents on one side vs both sides of the head. It grew around my balance and hearing nerves, and then squeezed out of my inner ear into the part of the brain next to the ear.  Facial nerves hang out in those tights spots as well. As the tumor has pressed against those nerves, I have felt odd sensations which is what led me most strongly towards diagnosis. Most patients first notice vertigo or hearing loss, so my case is a bit different.

Removing the tumor is not the same for all, tumors have different levels of ‘stickiness’ to the nerves, some areas may be preserved if we remove others, etc.  Before surgery I made the request to preserve the facial nerve if possible, at the cost of the hearing and balance nerves (which is probably what they were going to do anyhow but it made me feel like the boss).

On August 12, the vestibular schwannoma was removed at the UNC Chapel Hill hospital. It was a 10.5 hour procedure. The length of the procedure was good, it meant that my brain was not swelling much, so they could continue to extract bits of tumor.

The giant sized peach pit tumor was 98% removed. We will monitor it and see how quickly / if it grows for the next few years. There is additional treatment available as well, which I can share in a later post.

It has been 11 days; some good days and some bad days. I am already very active. Taking walks, engaging with my family, and eating too much. I get headaches, terrible cold sores (from the tube in and around my mouth we think), and I get very tired.

I lost my hearing in the right ear (which is more than some others have, so I am grateful!), I have an ongoing (imaginary) noise in the right ear where my brain is listening but has nothing to hear. The more tired I get, the louder it is. Pain and discomfort gets stronger when I get tired. Resting is the key.

Concentration is much better. I look back over the last year and never realized how much I was struggling. I can hold a thought much better now than I could 2 months ago. I think it is tough for the brain to work through too much interference.

Overall, I expect to be at a new normal – in a great way – in a few months. Everyone heals differently.

Later date, I will update this blog, including How I Prepared for the Surgery, Updates as I heal, What Works and Doesn’t Work.