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.



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