Its been a couple years now since I’ve required a dilation for my posterior glottic stenosis, which I initially developed back in 2019, presumably caused by so many intubations. Because I’ve been doing pretty well since then and not experiencing any stridor, I just kind of assumed I wouldn’t need anymore surgeries. So much for assuming, that all changed when I had a recent visit with my ENT to address a totally different issue. Here’s the story….
So, it was a couple of weeks ago during a routine follow up appointment with my primary care doc, where I casually mentioned I was having these random episodes, in which I would hear my heart beating in my right. It would come and go, but was getting really annoying. I describe it as a kind of clicking and sometimes whooshing sound that’s always in sync with my heartbeat and that I only hear it in my right ear.
Well, apparently what Ive been experiencing is called “Pulsatile Tinnitus“. Unlike regular ringing in the ears type of Tinnitus which is more of a nerve thing, Pulsatile Tinnitus is an actual internal sound that is often caused by blood flow problems or tumors in the arteries around the ears, sometimes the brain. People with Hypertension and Atherosclerosis are particularly susceptible to PT. Sometimes PT requires ongoing therapy and treatment for the underline cause. Other times it just disappears by itself and never comes back. I hope this case is the latter, just a one- off. The good news is my PT has been decreasing in frequency, though not completely.
Wanting to err on the side of caution, they’re having me do the recommended series of diagnostics for for TS, which includes examination of the ears by and ENT to make sure there’s nothing going on with the eardrum itself, an MR angiogram of the brain to look for tumors or other obstructions, and a general hearing test. The MRA and hearing tests are is still a few weeks out, but I did manage to score an appointment with the ENT, which brings us back to the title of this post.
The ENT doctor examined my inner ears thoroughly and they were found to be totally normal. She couldn’t find anything that would be cause the clicking sound in my ear, so she recommended I continue on to the imaging test of the arteries in my head. Since I was already in her office and because ENT appts are really tough to get, she decided to take a look at my vocal cords to see if there had been any changes since the last inspection.
Below is the actual image of my cords and summary from my ENT visit last week. In a nutshell, while the amount of stenosis or airway opening looks about the same as last time, the scar tissue that is restricting the movement of my right vocal fold (circled), is getting worse. Because of this, the ENT referred me back to the Otolaryngology department for further evaluation. Those are the people who do the actual dilation surgery.
So does this mean Ill need a 7th dilation? Almost certainly yes, and here’s why….. Most people who have posterior glottic stenosis have a sense of when they need another dilation. They notice their breathing becoming gradually more difficult, noisier and just more noticeably obstructed. The problem with someone like me who has chronic severe lung disease and is short of breath all the time, is that I don’t rarely notice subtle changes in the effort to breath. I usually don’t perceive much difference in my breathing from day to day unless it gets significant worse and/or downright dangerous. Instead I have to use objective tools, like measuring my like peak flows or listening to my neck with a stethoscope to see if it sounds load or wheezy when I breath in.
My perception of my own breathing is so out of whack that I didn’t even know I had Glottic Stenosis until one day I noticed that I was having audible inspiratory wheezing/stridor during my daily walk. A few days later a finally brought it up with Pulmonologist. He thought it was just my asthma and reluctantly ordered a stat CT scan of my chest just to put me at ease. Thankfully an observant Radiologist discovered that my vocal cords were almost totally closed. He was amazed I could breath at all. He was so alarmed at what he saw that he contacted Pulmonologist urgently, who in turn called me before I even got home from the CT scan. He told me to return to the hospital as soon as possible for fear that I might need a tracheostomy. Talk about stressful! Honestly though, I didn’t “feel” that much more short of breath than I normally do. It was only when I was exerting myself that I noticed anything at all.
If it were anyone else, the they might defer any surgery until the stenosis was a little more advanced. But with a history of the multiple dilations and my tenuous respiratory status, they will more than likely say… lets do this now, while its still manageable. Of course we have to take in account all pros and cons involved with another surgery. Normally glottic dilations are done as outpatient procedures, but because my body reacts really weird to the anesthetics and the ventilator, it almost always requires at an overnight stay in the hospital.
I’m hoping that because my asthma has been more stable since starting on various asthma biologics, that there wont be any hiccups this time around. Even if I sail through the procedure without major complications, I’m still looking at a nasty sore throat for at least a few days afterwards. I remember a few surgeries ago, where my mouth and tongue were badly bruised from the equipment they use. I’ve also lost my sense of taste after a couple of these procedures. Not fun, but apparently normal. In any case, unless I get hospitalized for my asthma or my vocal cords suddenly close up before then, the earliest they would be able to do another dilation is probably September or October. That’s OK by me.
As far as Pulsatile Tinnitus, we’ll have to wait and see. The MRI is scheduled for mid July and if that comes back negative, its on to the hearing test. If all of these tests are inconclusive and the clicking in my ear continues, they’ll refer me to the PS clinic at UCSF. I might add that this clinic is one of only a few in the country that specializes in this condition.
UPDATE 8-09-2024:
Saw the Otolaryngologist both in the hospital, when I was there recently with a bad asthma flare, and also as an outpatient earlier this week. While the scar that is tethering my true vocal cords has worsened, the way in which my cords abduct ( open ) is the same. The glottic opening is also the same (about 50%). Given that I dont have stridor and the high risk for triggering my asthma with another dilation, we decided to hold off on surgery. Instead, we’ll monitor it closely and do surgery if things get worse. Phewww…. What a relief!
Related Posts:
