I think I’ll start with a re-hash and bring my situation up to date.
Today, July 31st, was another trip to 219. N. Broad Street, Tenth Floor, Philadelphia PA. The Drexel Medical Building is the home of Philadelphia Ear, Nose and Throat and the office of Doctor Robert Thayer Sataloff. It’s a place I’ve found myself visiting several times a year for the past two years. On these visits, the news has been mixed. I’ve experienced all forms of dysplasia (read — pre-cancerous cells) and one in-situ carcinoma (read– cancer) that had to be removed. I’ve been resectioned, grafted and implanted. This is a continuing saga, as I’ve noted previously in this blog. It started with a biopsy in 2012 that found in-situ carcinoma. That’s good news and bad news. Every woman who has faced down breast cancer would love to be told it is insitu -. That’s as opposed to invasive — the stuff that spreads. So, I’ve now got a face of my vocal fold that’s missing some tissue. And the doctor took more than he thought he had to, to insure a margin of good tissue was what was left. What happened next was a version of watch and wait. And in December of 2012, Dr. Kieran Connolly, my first ENT specialist who discovered my issues, scoped my vocal folds and saw something he didn’t like. “Van, where this leukoplakia is situated, I don’t feel comfortable excising it. I think I want to refer you to the Helen Graham Cancer Center.”
I’d heard stories about radiation and vocal folds. It was risky, in some cases. I had enough risk already and didn’t want to make that choice. I reminded Dr. Connolly of a prior conversation when he mentioned a colleague of his who was head of Otolaryngology at NYU. He’d mentioned that Doctor Amin was skilled at laser surgery, even to the point of doing it in his office on the same day as the visit. He agreed to refer me, so I’m off to NYU. Milan Amin was a very nice man as were his associates like Ryan Branski, an associate professor of the Department of Otolaryngology. After a thorough examination and a meeting with professors, department heads, fellows and students I was told the procedure wouldn’t lend itself to being performed in the office but would require an out-patient surgery which we scheduled for the following month.
January of 2013, I’m back at NYU but this time to the Langone Medical Center where they removed my leukoplakia successfully. I did follow-up with both Dr. Connolly and Dr. Amin. My leukoplakia was determined to return. I again had one removed in 2014 and it was benign. We removed another in 2015. I have two very good friends who use their voices professionally. Both of them had told me, “Go to see Dr. Sataloff. He’s the best ENT specialist in the world. And in 2016 I did.
A trip to Dr. Sataloff is very confidence building. First of all, they warn you to expect to spend six to seven hours in your first visit. While you wait to be seen, you are a room with three walls of 8×10 photographs of people you will probably recognize. Peter, Paul and Mary, Charles Carault, Julie Andrews, Bobby Rydell, Pavorotti just to name a few. All these photos have comments extolling the virtue of Dr. Bob
After a short wait, they give you a very thorough evaluation. You see specialists in hearing, speech pathology, allergies and laryngology. Everything is explained including the results of the testing. But I left out the remarkable part. I thought, “I’ll see all the underlings and they’ll show me into Sataloff’s presence for a honk and wave and then I’ll be sent home. ” Not so! HE WAS WITH ME MOST OF THE TIME. I started with him. Some of the first words out of his mouth were, “Van, your case is not hopeless.” I had been afraid it was hopeless but had been fighting the thought. It restored my confidence.
Then we did something else that had been glossed over. It revolved around Acid Reflux, something from which I had apparently suffered since 1989. At that time I shared with Dr. Suh, an ENT specialist who corrected my deviated septum, that I had urges to clear my throat. His response: “Don’t clear throat.” We now know frequent throat clearing urge is a marker for Acid Reflux.
Dr. Connolly had diagnosed my Acid Reflux and prescribed medication. Dr. Branski told me I was not using the medication properly and corrected it. Dr. Sataloff elevated the problem to a religion. I was introduced to two author who’d researched an published on the subject. Result: I bought 3 books on iTunes and started reading immediately. My reading introduced me to the the idea that acid reflux was a proximate cause of my condition and if I couldn’t control that, there would be a very low chance of fixing things. Dr. Sataloff asked me one question: “If I did surgery on your arm and you dunked it in hydrocholoric acid, do you think it would heal well?”
Now, I take protonics a half hour before meals and eat within an hour of taking it. I take Gaviscon ExtraStrength after meals and before bed. I take two Zantac 150 before retiring. I do not lie down within three hours of eating. When I do, I avoid acid rich foods, onions, raw garlic, tomatoes, soda pop (a pH of stomach acid!), tobasco and hot peppers in general. I also have a whole-bed wedge that raises the head of our bed by four inches and gradually declines to the foot of the bed. At one point, I had a tube inserted into my esophagus to measure my acid situation. I found the problem to be real but indicated my attempts to control it were effective. Each time I re-visit the office at 219 N. Broad Street in Philadelphia, I am asked to confirm everything in the paragraph above is still being done. With no disrespect to all the other ENT specialists with whom I worked, Sataloff is very thorough.
So, when Doctor Sataloff said that it was time to take the bull by the horns I wasn’t worried. He wanted to rebuild the area on which so much attention had been lavished for six years. As that attention was damaging to the amount of tissue left, his thought was to rebuild my vocal folds.
Vocal folds must touch for speech to sound normal. Mine didn’t. In the effort to remove cancer and dysplasia over the years, my vocal folds had become bowed. Sataloff wanted to remove the convexity. In February, we learned that was not going to be easy. In my youth, I smoked cigarettes. I quite over 30 years ago but perhaps the damage was still there. In what was to be a one and one half hour procedure as an outpatient, Sataloff discovered that the base of my folds didn’t support the grafts he initially tried. After five hours, with considerable stress on the organs pushed aside to sustain the surgery, I was moved to the ICU where I spent the night. I was permitted to leave the hospital after four days, after my tongue has shrunk to only twice its normal size and I could swallow again.
Considerable time was spent healing from that experience and the next procedure was scheduled for June. I was told we had a range of options to pursue and the doctor would choose as my body suggested. When I came out of anesthesia, my wife and I were told that Sataloff has used the easiest choice successfully. I went home to heal and he headed to the Chesapeake Bay for a working vacation to finish a book he was authoring. This gets us to July 31st and the good news.
Every visit to an ENT specialist in this quest has one similarity — I get scoped. A camera on a tube is inserted to view my vocal folds, either through my nose or into my mouth. I can see the results, sometimes on the monitor while it happens but always after as it’s replayed for me and we discuss. On July 31st, my vocal folds met. That’s what they are supposed to do. Now my job is to work with the speech pathologist to promote the use of my true vocal folds rather than the false ones. (Here’s a link to explain, for the curious.) I’m scheduled to work with Jesse Palmer, a speech pathologist in Sataloff’s office next Monday, August 6. And here is the good news: Procedures from here on, if necessary, will involve tinkering. In effect, Sataloff turned what looked like inpossible to probable. My tightness will subside as the tissue involved in the June surgery softens. By December (my next follow-up), my voice could even be termed “normal.”
I’ve always been the optimistic and hopeful type. It’s who I’ve almost always been. The past six years have really tested that posture. With the help of many friends and family, I’ve been supported very lovingly. I appreciate it more than I can say.