Thursday, January 15, 2015

All I need is a miracle

With a sense of fear for the worst only kept at bay because Rachel's optimism was by my side, did I go to see my Otolaryngologist (ear nose and throat specialist) yesterday.

My ability to speak had improved steadily after surgery and through December.  I had followed all of the painstaking restrictions from no talking whatsoever immediately after surgery to limited use through the holidays.  Despite the regimented approach, my voice had progressively gotten worse in the last three weeks.  In the last three days the complications seemed to increase exponentially and I was basically pushing air out without any sound.

My anxiousness and fear were that, while having Recurrent Respiratory Papilloma as an adult was already rare, (18 in 1,000,000 or about 6,500 cases in the US)  in some cases people require continual surgeries over their entire lifetime to mitigate the problem, prevent breathing issues and it results in permanently altered speech.  Of course this is worse case, but it was still possible.

When I had the video scope of my larynx on Tuesday, the images actually looked worse than they did before I had the first surgery.  Looking at both images side by side just about took my breath away.  Not only did it appear that my case was recurring, but at an escalated rate.

To ensure that we were well prepared for the appointment, I wrote down a series of questions.  All too often I will get flustered in these situations and walk away with questions unanswered.  Rachel suggested the list and it helped me to feel more comfortable about our goal of the appointment which was to understand the diagnosis, the treatment options and the impact on life moving forward.

I kept thinking, "all I need is a miracle."  On this day, miracles were granted!

When the doctor used the endoscope (flexible fiberoptic telescope) he was able to get a close up view of my larynx.  This view has a great level of detail than the video scope.  His immediate remarks were that he was very pleased with the results.  The areas that he previously removed the papilloma with the laser in October were free of more papilloma and looked healthy.  The one area of concern that showed on the video scope in worse condition than pre-surgery, was actually the one area that he purposely did not surgically remove the first time and was not a recurrence of the virus.

The doctor explained in much better detail that his approach was to perform this work over two surgical procedures to aid the healing process of the vocal folds.  This was discussed with me last fall, but it was not made clear that a second procedure was definitive.

On February 11th I will have my second direct laryngoscopy.  The bottom line is that the diagnosis was the best of the worst.  Surgery again was apparently inevitable to remove the papilloma and things could have been much worse.  It is on this basis that I feel blessed to not have gotten the worst of the worst news.

Unless there is a recurrence, which is extremely rare in adults, it will be my last procedure toward a normal functioning voice.  Until then I  have limited ability to speak, and while some days are better than others, it is unpredictable to how much volume I have on a daily basis.

The recovery will be identical as last fall.  Basically I won’t be able to talk at all for two weeks, then just single words for two weeks, then a few sentences for two more weeks. I feel like I am better prepared to handle the quiet time, which really killed my spirit the last time.  I still will probably avoid uncomfortable social situations where speaking is critical and handle all other communications with typing and writing.  

I couldn't do any of this without the support of Rachel.  She keeps my spirits up and even when situations can be frustrating without being able to talk, has stuck with me patiently.

As one of my friends wrote to me in November when I couldn't talk, they said that the quiet time really helped me to find my voice, referring to my writing.  I hope to find that voice again over the next few months and I look forward to being able to speak normally again.