Thursday, September 2, 2021

I've got a spinnaker sail in my throat, but no mets

In mid-May, my voice suddenly became hoarse. I woke up one morning and was unable to speak with any force. I couldn't shout or sing (well, I couldn't sing before either, but now I couldn't make singing-like noises). I had no other symptoms. I figured it was springtime pollen and ignored it.

On June 10, I went in for my quarterly CT scans. They were clear, but Dr. Maughan suggested that I have my hoarseness checked out by an ENT. Who knew that would lead to a rabbit hole from which I'm still trying to escape. On June 14, I visited an ENT, who shoved an endoscope (a type of rectal probe) up my nose, through my sinus, snaked it down my esophagus, through my stomach, then through my intestines until it came out of my butt.  Ok, maybe I'm exaggerating a little, but that's what it felt like. The ENT said I was negative for any tumors, cysts, or hemorrhoids, but that the right side of my vocal chords were inflamed. He pulled on his beard, consulted some tea leaves, threw down some bones and stared, then concluded that I had "silent acid reflux" that each night was rising from my stomach and hitting my vocal chord while I slept on my right side. (I don't sleep on my right side, but he didn't ask me and I didn't want the facts to conflict with his amazing prognostication.) He suggested that I take an over-the-counter antacid such as Prilosec, patted me on the head and sent me on my way. 

Stupidly, I went out and bought some Prilosec. I flew to Florida a few days later to visit my mom, sister, and their respective spouses. The Prilosec had made no difference, but I'd noticed some occasional tightness in my lungs and occasional coughing. After I returned from Florida, I went to a urologist to follow up on the radiologist's conclusion that my neobladder was showing signs of chronic inflammation. He pulled up my CT scans, called in a couple of his colleagues, and they all hummed and hawed at the magnificent work of Dr. Gary Steinberg, who constructed my neobladder more than 9 years ago. Finally, one of the urologists turned to me and said that they usually don't get to see juvenile neobladders in the wild. They all concluded that the radiologist who saw chronic inflammation was on drugs and that my neobladder was fine. They patted me on my head and sent me on my way.

I continued to take the antacid and noticed no improvement. I made an appointment with my GP to renew one of my prescriptions, and we spent a half-hour reviewing my hoarseness symptoms. He smiled at the ENT's clever but misguided diagnosis. He was confident enough to tell me that he didn't know what was causing my idiopathic laryngitis. He suggested that I visit another ENT to get a second opinion, and also get a pulmonary function test. Dutifully, I did both. The second ENT gave me a second opinion (not only was I fat, but I was also ugly). In revenge, he snaked his rectal probe through my sinus (after promising that it had been thoroughly cleaned several months ago) and concluded that there was no visible cause of my idiopathic laryngitis. He did admit, however, that they called it "idiopathic" because patients were idiots. I was comforted by his candor and told him that I was Covid-19 positive. He smiled and said "me too." He added that I could stop taking  Prilosec. It took me several days to figure out how to stop  Amazon's recurring delivery. 

That brings us to the present. Today I got another round of CT scans to my neck, chest, abdomen and pelvis. After I returned to meet with Dr. Maughan, his PA Lindsey popped in and told me that the radiologist had found that I had a bunch of pulmonary embolisms in my lungs, so they were holding me there until they had a better reading on what was going on. I recounted to Lindsey how in October 2014 I'd been called into NIH for a clinical trial evaluation but when they found I had PE's they instead hospitalized me for several days and started mo on Lovenox. Lindsey was glad that I wasn't freaking out, and told me they'd put me on a blood thinner such as Xaralto. A few minutes the clinical pharmacist came by and told me about a program with Xaralto's manufacturer had to reduce the cost of the drug, and in a few minutes I'd made the arrangements to get the discounted price. I appreciated that patient-centric concern.

Eventually, Dr. Maughan came in and reviewed my chest CT scan with me. Scrolling through the scan looked like a scrolling Rorschast Test, but he assured me that I was about to die of a heart attack, and could I add him to my will. But seriously, he said I should start on Xaralto ASAP, plus get an EKG and an ultrasound of my legs to confirm the DVT. Later I got a message from Lindsey that he also wanted to have an MRI of my brain to confirm that no clots were about to cause a stroke.

As I was typing this, my scans were posted. No metastatic disease noted. Yay! The chest scan found:

"Filling defect in the lobar pulmonary arteries of the right upper lobe, right middle lobe, and right lower lobe with extension to the segmental and subsegmental pulmonary arteries consistent with acute pulmonary embolism."

Ok, so I've got lots of blood clots in my lungs. That's bad. I'm glad the scans caught it, and hope the Xarelto will work as well as it did 7 years ago. I'll start it tomorrow.

My neck CT scan found: 

"Findings consistent with a left cord paralysis with spinnaker sail is identified. There is medialization and thickening of the left aryepiglottic fold."

Holy potatoes, Batman! I have a spinnaker sail in my throat! What the heck is that? I'll summarize my research later. For now, a quick search using my favorite search engine showed this:

https://pubs.rsna.org/cms/10.1148/rg.323115129/asset/images/medium/115129fig07b.jpeg

2 comments:

  1. Thanks again, so good to read your pioneer story of a journey I am now on. 6 doses of Opdivo and two Phizer jabs. Had all my surgeries early in the year, Melanoma and Kidney cancer. Lost the kidney but got a new eye lid :) you are an inspiration. D J Hale

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  2. I was watching the FDA workshop, can't believe you are going through this...

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