Lest We Forget

Lest We Forget – Part One

In late January 2016 I was diagnosed with a very large pituitary tumor.  For those who don’t know what this is, it is a tumor inside the cranial cavity.  I hope you never need a brain surgeon, but if you suffer from one of these surprisingly common afflictions you’ll find you have no choice.  So, to protect yourself and your loved ones you need to know more about them – this series of posts might serve that purpose.  It details the events and circumstances that built up to and surrounded mine, please read on.

My past treatment at various doctor’s hand ensures a deeply defined suspicion of them.  Thanks to the encouragement of a close friend, I managed to overcome my resentment and found a wonderful personal physician, Dr. Shelley Blackburn, early in 2015.  I have no doubt she is the reason I still have my eyesight.

In 2015 the vision in my left eye began deteriorating.  I noticed it soon after it began because it started as a blurred spot directly on the focal point of my left eye.  I visited an optometrist for an examination and discussed it with her, but she couldn’t find any optical reason for it – my eyes seemed healthy.  She prescribed new glasses and asked if I’d like to visit an Ophthalmologist for a follow-up exam.  I asked if they’d be able to fix the problem, to which she replied “Probably not, but at least you’ll know what is wrong.” Since I was on a very high deductible insurance plan I decided not to spend a large chunk of my own money for no results.  Big mistake.

Over the remainder of 2015 I watched the blurry spot in my left eye expand until over seventy percent of its vision, from the left edge to well past the center, was severally compromised.  Foolishly, I shrugged it off as the likely result of a Cavernous Sinus Thrombosis suffered over thirty years previously.  {Yes, that incident was a major contributing factor to my distrust of doctors.}  How could I be so stupid?  Easy.  The Cavernous Sinus Thrombosis pinched the optic nerve of my left eye until I lost control over it and could no longer distend it to the left.  Some time afterwards I was prescribed spectacles because my left eye was significantly weaker that my right.  This blurry vision was simply another ramification of that old injury, right?  Wrong.

The way things appear at first glance is not necessarily the way they are…

In early January 2016 I noticed a blurry spot beginning to form in my right eye.  My old injury had not affected my right eye in any discernible way, so I realized I needed to act.  Since the optometrist had no idea regarding the cause of the vision loss in my left eye it became clear I needed to see an Ophthalmologist.  Ophthalmologists are specialists, in the USA to see one you must have a referral. I made an appointment with my GP.  Fortunately, my company’s insurance provider changed for 2016 and I had opted for a lower deductible insurance plan.  On the old high deductible plan I would probably have delayed, a hesitation that may well have resulted in me being clinically blind today.

During the visit with my GP I asked for a referral to an Ophthalmologist.  Fate stepped in.  It turned out Dr. Blackburn is blind in one eye.  I described my symptoms and she immediately set to work.  Here in the USA most specialists are booked up for months in advance.  Dr. Blackburn called in a personal favor and secured an appointment for me with an Ophthalmologist associate of hers for the next day.

The Ophthalmologist, Dr. Richard (*), proved to be extremely thorough.  Test after test showed no cause for my vision loss – both my eyes were healthy.  Eventually he called for a Visual Acuity test.  Bingo.  As soon as he read the results, which define clear borders for our peripheral vision, he explained what he’d found.  In his opinion I was displaying classic symptoms of a large pituitary tumor.  This type of tumor stretches both optic nerves and results in loss of peripheral vision.  I needed an MRI performed immediately.

Dr. Richard called Dr. Blackburn, she arranged the MRI, immediately.  At 8pm that night I went into hospital where I lay inside the Magnetic Resonance Imaging chamber for half an hour, listening to the loud clicking, banging, and crashing of extremely technical and precise machinery mapping out my brain and skull.  A word to the wise… if you ever need an MRI accept the option of loud music to both pass the time and deaden the noise.

The next morning Dr. Blackburn called me to confirm that I did indeed have a pituitary tumor.  A very large pituitary tumor.  How large?  Mine was 24 millimeters.  Imagine a one inch diameter marble sitting right inside your skull, pushing against the Frontal Lobes of your brain, distending and crushing your pituitary gland, and stretching both optic nerves.  That is essentially what I had – it turns out I never lost my marbles, the doctors found mine…  {Actually, I did lose my marbles, but that came later, when I was in hospital recovering from the surgery.  I’ll be writing about that in a later installment of this article.}

Again Dr. Blackburn jumped into action to secure an appointment with a Neurologist she knew.  Unfortunately Dr. Blackburn’s acquaintance was fully booked, however in turn she took the time to call a Neurosurgeon associate.  Once again, instead of having to wait months for an appointment with a specialist, I had one in a couple of days.  And what a wonderful person Dr. Brett (*) turned out to be.  Calm, measured, thoughtful, and willing to take as long as necessary to explain everything to our satisfaction.  Also, though significantly younger than me, Dr. Brett’s temperment strongly reminded me of my deceased oldest brother – these little things matter.

Dr. Brett explained that before a course of treatment could be determined we had to find out if the tumor was productive or non-productive and whether it was cancerous.  A productive tumor produces hormones that generally play havoc, a non-productive tumor doesn’t produce hormones, and a cancerous tumor is bad news of another ilk.  To determine the tumor’s type I had to see an Endocrinologist.

Yet another specialist, yet another potentially months long wait…

This time it was Dr. Brett who called in a favor by securing an appointment for me.  Oh, and in case you doubt this chain of remarkable good fortune, I personally overheard him calling and speaking with the Endocrinologist to explain the urgency of the situation and how much he’d appreciate her seeing me ASAP.  This was midway through a Friday afternoon.

The Endocrinologist, Dr. Michelle (*), agreed to see me early the following Tuesday afternoon, but warned I might have to wait as she was scheduling me during her lunch break. She also instructed Dr. Brett as to the specific bloodwork she would need to make a diagnosis.  She needed a lot of tests performed.  Dr. Brett had his assistant make an appointment for me with him the following Wednesday, then called the bloodwork department and sent me down to have the bloods for a copious number of tests drawn.

How fast was this happening?  So fast that when I arrived to have my blood drawn they hadn’t yet received the written orders.  I waited the short time necessary, then had multiple vials of blood drawn.  The phlebotomist told me I needed to come in first thing on Monday to have another draw made, to test my hormone levels after a night’s sleep.  That particular draw took a day to process, its results would be delivered to Dr. Michelle by noon on Tuesday.  She would see me in the early afternoon, so there was no time wasted.

Things were rapidly falling into place.  Everything was progressing incredibly smoothly, surely this was a good omen and an indication of things to come?  Unfortunately it was not.

Tuesday afternoon Dr. Michelle gave me the good news.  My tumor was both non-cancerous and non-producing.  My hormone levels were all within their normal ranges, and she now had a baseline of what we would have to aim for after treatment.  She also warned me of likely outcomes and what she would be looking for after the treatment performed by Dr. Brett.

Wednesday came.  I saw Dr. Brett, who went over the results he’d already received from Dr. Michelle to confirm her prognosis.  He explained that surgery to de-bulk the tumor was the best option, possibly followed by some chemotherapy or radiological treatments, should they prove necessary.  He went over how he performed the surgery, answered all our questions, and we scheduled surgery.  A quick skim through his appointment diary showed no openings for weeks, except for a single blank spot on Tuesday, 7th February, which happened to be the following week.  I made a joke about spoiling his golf outing to cover my relief at not having weeks to fret over the tumor growing in my skull.

I would be his first case of the day and would have to be checked in, ready for surgery preparation by 6am.  The method Dr. Brett uses for this surgery is a transsphenoidal pituitary resection.  This procedure involves using an Endoscope, inserted and operated via one of the nostrils to enter the cranium and de-bulk the tumor.  He explained that this type of surgery normally takes about two hours, along with an hour’s preparation and another hour post op to wind down.  Most patients are released after a one or two-day recovery period in hospital.

In my case this was not to be.

Due to complications, the surgery itself took five hours.  My recovery time in hospital wasn’t two days, it was a little over two weeks – the first six days of which were spent in the Intensive Care Unit, and of which I have only fragmentary recollection.

How do we prepare for a total memory loss?  Lest you think we cannot, we can – though not in ways that easily spring to mind.  Since I have firsthand experience of the phenomenon I’ll be addressing this in a following post of this article.  For now, let me assure you total memory loss is nothing like it is portrayed in the movies.  Nothing at all.

How is our damaged faith restored?  Through the efforts of those who care.  Everyone involved in my case cared.  From the many nurses who looked after me to the doctors who treated me, everyone involved made extraordinary efforts to ensure the best possible outcome for me – someone of whom they had no personal knowledge.  I am humbled and grateful to them all for tending me during this frightening ordeal, and believe me when I say it was frightening.

The end of part one.

I hesitate to refer to this post as “my story” as that indicates fiction, and this is not a fictional account.

Please accept my apologies for not completing this article in a single post.  I am unable to do so for several reasons.  First, I am still recovering and lack the mental and physical endurance to write it all in a single article.  Next, just the introduction is already over 1500 words, which is much longer than a blog post should be.  Next, it is not yet over, I am still recovering and have a long way to go till I am back to normal, if indeed I ever get there.

(*) Name obscured to protect individual privacy.

The article continues in Lest We Forget – ICU.

About C.G.Ayling

Musing misuser of words, lover of lyrical literature, author, occasional contrary thoughts. An honorable man’s name, in memoriam.
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25 Responses to Lest We Forget

  1. Nerene Scholfield says:

    I have been praying and thinking about you constantly. So very good to hear that you are on the mend and see your creative side functioning well. Sent messages to your dear wife.

  2. Nandita Das says:

    Truly moved by this. My prayers and best wishes for you. You’re truly a wonderful person and I pray God grant you a healthy, happy and long life. God bless.

  3. Ben Wilkus says:

    Well. This explains why I lost track of you in January!
    Listen, if you see CVDW (*) tell him I said to take damn good care of you!

    • C.G.Ayling says:

      I see him every time I glance in the mirror, which I do as infrequently as possible. I hope you, your wife, and your precious son are all in good health. Nice to hear from you, Ben, thanks for stopping by. I hope to have the next installment of this saga ready soon, hope you drop back and read it 🙂

  4. Sarah Gaylard says:

    For my dear dear brother am so happy to see this post… you’re on your way back. Was so worried we had lost you… that essential part that makes you such a unique man who I am privileged to call my brother. Know I will always love you even if we are continents apart and think about you constantly. Hang in there big brother

    • C.G.Ayling says:

      Thank you Sa, I’m sorry it has taken me so long to write this, and from the looks of things it will take a while more. There are another two posts to go in this series, but I’m finding it extremely difficult to write them as I want to present this in a fashion that gives others afflicted with this ailment hope.
      All of you are in my thoughts, often.

  5. Jan. says:

    Thanks for writing this Charles.
    I’m sorry so many miles separate us, and that I couldn’t be of more support, beyond praying constantly for you from far away Botswana.

    • C.G.Ayling says:

      Thank you Jan. The fragmentation of families is one of the saddest legacies of our era. It afflicted us, and I see it doing the same to our offspring. I wish there was something people could do to prevent it, but I fear that is an empty wish.

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