Idiopathic Subglottic Stenosis Surgery March 2007

[Jody]

Hi, my name is Jody. I am a 56-yr-old administrative assistant from Wilmington, Delaware. I was raised in Arlington, Texas, in a musical family and I am a former high school and college orchestral string bass player. I met and married college sweetheart Don (composer, jazz pianist, lecturer, writer, Division Head of Graduate Jazz Studies, Chair of the Piano Department, and Co-Chair of the Music Theory Department at the University of the Arts in Philadelphia, PA), without whom I never could have been able to make the trips to Boston and endure the surgeries and recovery process. We have 2 grown sons. Brad is pursuing a master’s degree in film studies at Emerson College (partly as a result of getting to know Boston while accompanying me on medical trips). He holds a bachelor’s degree in music composition from the University of the Arts and is also a free-lance magazine/web-magazine writer. Brad switched careers after editing his dad’s film documentary “Brownie Speaks”, about a local Wilmington, DE jazz trumpet great, Clifford Brown. (Boston will have a December screening at the New England Conservatory of Music.) My oldest son, Chris (software support engineer), has a beautiful wife Thalita (respiratory and physical therapist from Brazil), a daughter Ana Julia and a son Nick. They are all very special in my life; I could not have gotten through my illness and recovery without my family’s support and prayers.

Medical History:

In January 2001, I developed a very bad respiratory infection with a sudden onset of shortness of breath. The family doctor prescribed asthma meds and inhalers. I had asthma as a child and had outgrown it as an adult. This shortness of breath did not feel asthmatic to me. I continued with periods of hoarseness and sore throats. After preliminary heart tests came back, the doctor told me I had pulmonary hypertension. A pulmonary hypertension specialist at the University of Penn Medical Center started a series of stress echocardiograms and lung function tests over the next several years. Initially, systolic and distolic numbers were not good, but the specialist later confirmed that I absolutely did not have pulmonary hypertension and dismissed me.

The doctor I saw most often was a local Ears Nose Throat (ENT) doctor. I had 3 bronchoscopies over several years and he said all results were clear, that I did not have cancer. I persisted with questions about why I was having frequent sore throats and why my breathing was getting worse. Again and again he told me I did not have cancer, nothing was wrong with me, it may all be stress-related.

I had MRIs, CAT scans, a sleep apnea study, colonoscopy, and endoscopy. Nothing wrong showed up.

Since asthma had been diagnosed some years earlier, I decided to visit an allergist. Interesting thing about that visit. The allergist pointed out in my pile of medical reports that the ENT doctor had written “right paralyzed vocal cord”. No wonder it had become increasingly difficult for me to sing to my grandson! I went back to the ENT doctor and asked him about it. He said he didn’t know what was causing the paralysis and the vocal cord may or may not regain functionality.

October 2006 I developed this horrible thing called stridor, a whistling noise when exhaling or talking. It interfered with speaking on the telephone at work. I gasped for air before finishing sentences. In January 2007, I resolved not to be defeated by this killer and to do whatever I could to find out what was happening to me. I went to an ENT doctor at University of Penn Medical Center. She saw “something red and inflamed” that would need to be cut out. She scheduled an emergency tracheotomy and surgery to excise and biopsy the “lesion”. Those words were shocking to someone who, up until 6 years earlier, had been blessed with a pretty healthy life; no prior surgeries, or intubations, or major illnesses.

In the meantime, Don nudged me to get an emergency second opinion (actually this was now the third ENT doctor). I had a videostrobe done in his office (crude in comparison to the state-of-the-art videostrobe done at the Voice Center), and the doctor was quite astonished at the pictures. He told me I had subglottic stenosis – a narrowing of the airway with scar tissue. He agreed with the Penn ENT doctor that it would be best to go in as soon as possible, cut it out, then another surgery would be necessary to put a stent in (I would not be able to talk for about 6 weeks), then more surgeries after that. He gave me a 60% chance of never being able to speak again, or having a permanent tracheostomy tube. Those were not very good odds in my opinion.

I figured I had to do everything I could to find the best surgeon in the country to perform this surgery. I started looking on the internet. I came across a curriculum vitae (over 40 pages) of a surgeon named Dr. Steven M. Zeitels who lectured and wrote on subglottic stenosis – not only in the U.S. but all over the world. I kept reading about him and was in awe of all the wonderful things he had done for performing arts celebrities and stars with voice problems. I was very excited about this, but had little hope that he would accept me as a patient. Don said, “It won’t hurt to call him to see if he can recommend a local doctor who can help you.” I dialed the number and within minutes I was telling my story to Dr. Zeitels, who stopped me and said, “I hear the stridor and it needs to be fixed. What’s your support system like? When can you get here? I have an opening on Wed and Fri of this week…” I was in shock and my head was swimming.

When we arrived at One Bowdoin Square for the first time, and stepped off the elevator onto the 11th floor, we looked at each other and, as the saying goes, we knew we weren’t in Kansas anymore. A group of people from Israel were on one side of the reception area, another group of people speaking another language came in later. After giving my long medical history, enduring the unpleasant scopes, and seeing an unbelievable videostrobe, Dr. Zeitels told me my condition was Idiopathic Subglottic Stenosis. (Idiopathic means they don’t know exactly what causes it.) Dr. Zeitels said it was as if I had been breathing with a trachea the size of a 5-year-old (at least 80% of the airway was closed). Then he explained the surgery. The tracheotomy would be done first. “Make no mistake about it”, he said, “you’ll have a tracheotomy.” Then he said the surgery would be done endoscopically - through the mouth - using a special laser that he invented which would not harm good tissue. Then with only a couple of stitches, he would put a stent in (one that he would modify to avoid the vocal cords and would allow me to continue speaking). Naturally, he couldn’t tell me exactly what to expect after the surgery – he would have to wait to see how close the granular tissue was to my vocal cords, etc. But he was optimistic that it would only take this one surgery, then one surgery in approximately 2 months to remove the stent. Dr. Zeitels had given me hope that someday I might have my life back.

Surgery March 20, 2007:

The surgery was a success – he assured me it was the most successful of this type thus far. I was in the hospital for a week. The trach was a bit of a shock. The fear of that overshadowed any initial enjoyment of being able to breathe without gasping for air. I was so preoccupied with the soreness from the surgery and from the very uncomfortable feeling of having a foreign object constantly in my throat. The MGH (Mass General Hospital) nurses were very caring, and by the end of the week, they had taught me how to care for the trach and surgery site. “How’s the breathing?” Dr. Zeitels and Don would ask. It slowly started to sink in, my breathing was perfect. Did I need voice rest? Absolutely not! Dr. Zeitels and his assistant, Dr. Broadhurst, encouraged me to talk. I was up and about the hospital in no time, taking in the great views of Boston.

Following weeks:

The following weeks back in Delaware were at times frightening. I spent my days and nights in a recliner chair next to my best friend, the nebulizer. I converted the dining room into a makeshift medical room with trach suction machine and supplies spread out everywhere. But even after meticulous cleaning procedures, I developed several very bad infections. I was prescribed antibiotics, but still felt pretty miserable. My daughter-in-law, Thalita, said that 90% of her respiratory patients in Brazil had trachs. With her stethoscope, she listened and pinpointed pockets of secretion around my lungs. Then she used therapy techniques to loosen the secretions, speeding up recovery. I kept thinking I was not cleaning everything properly, but she explained I was breathing directly into the open trachea and not through the nose, which would normally act as a filter for bacteria.

Two months after the first surgery, Dr. Zeitels successfully removed the stent in an outpatient surgical procedure at MGH. The trach tube was removed in his office about two weeks after that.

Voice Therapy:

Thankfully, Tara (Voice Center's therapist) helped me with voice therapy after the surgery. She showed me exercises to relax the muscles around the surgery site. Even though I continued the exercises, I eventually stopped them because I became frustrated that they weren’t helping. After 2 years, I accepted the fact my voice just wouldn’t be quite like it was before. However, at my March 2009 appointment, Tara told me she could immediately hear an improvement in my voice. Then she explained that I was speaking in a low, raspy, “protective” voice because I was subconsciously still thinking about the trauma to that area. I was using the wrong muscles to speak, making the muscles work harder. She helped me identify times I was using the incorrect tone, explained that I needed to train the brain to use the correct one, then showed me an exercise in which to correct it.

Moving On:

My most recent visit was October 2009. It’s been 2 ½ years after the surgery. No changes in the trachea. My breathing is still perfect. Both vocal cords are working perfectly. I can sing as well as I ever could and no more sore throats because of an incorrect speaking tone. Dr. Zeitels wants a regular six-month follow-up to keep watch on things.

What caused this Subglottic Stenosis?

It’s difficult having come through an illness that is said to be idiopathic. I’ve read that one of the most common causes for tracheal stenosis is prior intubation, but that was not in my case. The onset of my illness did come at a particular time when several other health factors in my life (thyroid, out-of-whack hormones, a very bad respiratory infection, and acid reflux) may have all contributed at once for a so-called perfect storm.

Thanksgiving:

I am grateful to God for leading me to this awesome place called the Voice Center.
I am grateful to Don and my family for their care and support.
I am grateful to Dr. Zeitels for accepting me as a patient and giving my life back to me. Along with his compassion and amazing talents for in-the-moment decisions and skilled hands, he is an inventor and innovator. I am thankful for his vision and unending work in research for laryngeal and voice restoration, and for helping to move it all forward with the newest technologies after decades of near non-existence. I’m thankful that he continues to teach. From my own experience, I had a doctor admit to me that this was an unusual case and it would be difficult for any surgeon. I had at least a 60% chance given to me, though no one will know for sure, of my life taking a very bad turn for the worse. Dr. Zeitels knew how to fix it right.
I am grateful to the staff at the Voice Center - Sonny, Tara, Melanie, and all the others – who have been so very helpful and comforting. I owe a great debt to these wonderful people.
I am grateful that I live in America where I could choose to go to the best place in the country and the best doctor possible for help with my vocal cord disorder.
I am grateful to Ms. Julie Andrews and to the board of directors for their support of the ILVR.
I would like to thank the creators, designers and administrators of this much-anticipated and much-needed forum. If you are a stenosis sufferer reading this, I truly pray for the best in your journey, and I hope you find my story helpful and hopeful.