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Vocal Cord dysfunction?

Ear, Nose & Throat (ENT) | Last Active: Oct 19 8:17am | Replies (42)

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@trishjune23

Yes, I have experienced the spasms you describe about 5 times. The first time was the scariest because it was while I was sleeping. Didn't know what was happening; could not breathe in or out or speak. Jumped out of bed, ran into the bathroom and tried splashing water in my face. Husband came in and tried to perform the Heimlich maneuver because he thought I was choking on something. A few minutes later, I was able to wheeze and breathe slightly. Within 15 minutes was breathing normally.

Didn't talk to a doctor till the next episode about a month later. After the first episode, all episodes happened while eating or drinking. Then I also started having intermittent right ear sensations. I was having vague breathing problems that I managed to compensate for by using techniques found in this book: Breath by James Nestor.

A few months later saw a pulmonologist to be cleared for a colonoscopy. She diagnosed me with dysfunctional vocal cords and recommended avoiding acidic foods, mint, coffee, etc, and sleeping with head elevated. Also prescribed an inhaler which I eventually realized wasn't doing anything. Also that summer, "valley fever" was ruled out for my breathing problems. Lung scan showed lots of old nodules. Pulmonologist wondered if I had been sick a lot as a kid producing these nodules.

About 3 months later became so sick that I could not swallow anything liquid or solid for 3 days and was out for a week from work. The Primary Care doctor thought that I had a combination of flu and something else (don't remember). Medication seemed to clear it up and went back to work.

Physician recommended seeing an ENT. 3 months later, an ENT scoped my throat and said that my right vocal cord was frozen. This was what was causing the laryngospasms. He ordered a neck scan to see what was causing the frozen vocal cord. The scan showed that there was a mass in my throat, partially blocking my breathing airway and touching my right vocal cord and approaching my carotid artery. The biopsy showed that the mass was thyroid cancer. At this point, he referred me to 2 ENT surgeons. FYI its not clear why I got thyroid cancer, so perhaps genetic.

I ended up going to Mayo Clinic because they were my best chance to take care of the cancer without losing my voice box. Further scans showed that the thyroid cancer had also spread to my lungs. Met with the Mayo Clinic cancer doctors about any options to try and save my ability to speak. They determined that the cancer was too far along and aggressive. Early September, my larynx was removed and spent one week in the hospital. Had NG tube for awhile at home and only eating soft food. Went back to work for one week but was then told by HR that I was not ready to go back to work since I could not speak.

Next month, found out from cancer team that I would need 30, currently at 24, radiation treatments to hopefully get rid of any remaining cancer cells. The radiation treatment has been difficult for 3 reasons. 1) Lying flat without coughing is hard for me, 2) have no desire to eat ( due to some pain when swallowing and food tasting weird) yet I need to eat to keep my weight up so the mask fits properly and neck heals and 3) uncomfortable neck edema and skin redness and blistering. In January, will start chemo. Hoping to return to work at the end of January.

The moral of this story, is if you have any problems with your neck or throat, see an ENT earlier rather than later. Your neck is involved in eating, drinking, speaking, and breathing!

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Replies to "Yes, I have experienced the spasms you describe about 5 times. The first time was the..."

What is the status of your paralyzed vocal cord? Until they position mine, first temporarily by inflating it and a year later with an implant I would aspirate. They have to view the process by moving the functioning vocal fold until they position the paralyzed one to close the gap. The doctor would tell me to make a variety of vowel sounds until the two matched up. I realize the cancer is very serious, but I don't understand how you can eat properly until it is resolved.