3 Years Later

It’s been 3 years since the 2nd mastoidectomy. I still remember the 2 months leading up to it like it was yesterday. Feeling the strange feelings all over my head. The constant pressure changes that Colorado brings in the Spring. Only amplified by the insane amount of pressure in my ear. As the barometer would fall, it would just feel like my head was in a literal vice.

As time moved closer to my appointment with the ENT who managed my ear, the pain exponentially doubled, daily. The biggest thing I remembered during this buildup period, is the anxiety that comes with this “experience”. I got an MRI of my head about a month before, and a familiar “spot” popped up on the left side. Radiologist basically called it inflammation / moderate mastoiditis, it felt like much much more. It felt like my head was just covered in fire ants. The pulsing from the infection was something that would get worse as the pressure dropped. Watching my labs literally inch higher and higher told me something was wrong. By now, my WBC was 21, my inflammation markers were through the roof.

But during this time, the one thing looming in the shadows, was this was all fueled by a toxic apartment. Hindsight is always 20/20, however, there was absolutely environmental involvement. The week before the surgery, the pain got to 13/10. Nothing helped anymore. Every morning, it was like getting ran over by a bulldozer, repeatedly. When the MRI resulted, I carefully combed through the images. I am really glad that I took the time to look, because what I saw, told me what was wrong.

When I looked at the imaging done back in 2022, it literally looked the same. The enhancement in/around my middle ear was back. It was at this point, I sent the images over to my ENT’s MA. Told her that I’m in excruciating pain.

My balance was gone. Every thunderstorm that rolled through, would just put me on the floor. The muscles on the left side of my head were just locked. I could barely turn my head. I started to just feel sick. I couldn’t eat, the room was always spinning. It literally felt like there was sand in my ear. My hearing was 100% gone. My head felt like a pendulum.

The night before my appointment, I made the decision to pack “the bag”. Basically my hospital stay bag. At this point the pain was 24/7, the Dilaudid wouldn’t touch it. My IVIg infusion I had the week before, just raised the bar. I don’t think it could’ve felt any worse. If you remember Charlie Browns teacher, that’s what everything sounded like. Any sound would just pierce straight through my head.

When the morning came, it took at least 30 minutes to get out of bed. The pain has now gone to 15/10. I was extremely disoriented. I had the worst headache I’ve ever felt. I stood in the shower for an hour. The heat was the only thing that helped. I texted my downstairs neighbor if he had time to run me down to my appointment. I didn’t trust myself driving with everything going on. Tapping on the left side behind my ear, it hurt like hell.

When I got into my ENT’s office, the anxiety was at an all time high. I felt like death. The swelling in my face was the absolute worst. The audiologist came to get me, and it took me 10 minutes to get up and walk towards the sound room. During the hearing exam, she began to get concerned when I maybe pushed the trigger 3 times during the left exam. When the time came to do the conduction test, I ended up ripping off the headset. That literally was the worst thing. Right then and there, she moved me to the pressure machine. Not even 2 seconds into the test on the left side, I had to pull out the ear plug.

When I met with the ENT, I told him that I was in trouble. I showed him the images on my phone from the MRI, told him everything that was going on. When he looked in my left ear, it was plain as day, there was something going on. That’s when I told him that he needs to admit me. I can’t do this / manage this at any level at home. I told him that he has to do something. He immediately agreed to admit me. I was so relieved that help was coming. I texted Aggie right away, told her what’s going on, where I was going to be. It’s never easy texting that stuff. I know that this whole ordeal has been hard on us both.

I got up into my room @ Swedish. ENT moved really fast, ordering imaging, and labs. As I met with the doctor at Swedish, I told him my pain was out of control. Gave him the rundown of what things feel like. The insane amount of swelling and inflammation at this point was paralyzing. The left side of my ear was constantly popping. The ENT came into my room and told me that he had me scheduled for surgery in the morning. We then started discussing what to do. Since I’ve already had the 1st mastoidectomy, there are only 2 options that remained.

• Option 1 – Canal Wall Up
  • The surgeon removes the mastoid bone to clear out disease but keeps the wall separating the ear canal from the mastoid cavity intact.
• Option 2 – Canal Wall down
  • The surgeon removes the bony posterior ear canal wall, combining the mastoid cavity and the ear canal into a single, large open space.

Between the two procedures, it made sense to opt for the canal wall up procedure. Seeing as how I’m immunocompromised, exposing my head to the outside world sounded like a really bad idea. Yeah I’m probably never going to opt to swim in a pool, however, it felt like the “safest” choice. But I knew what was to come, the recovery part. After our discussion, I contacted the short term disability company and opened a claim. I knew this wasn’t going to be a simple thing, or something I’m going to bounce back in a week.

Surgery went for about 2 1/2 hours. When I came to in the recovery room, it felt like I got hit by a bus.

The sheer amount of swelling was something I wasn’t ready for. When I got back into my room, I was put on a constant IV drip of Fentanyl. With an “on demand” button that I could push. About 3 hours post procedure, the fentanyl didn’t touch the pain. That’s when I threw on my call light, and wanted to talk to the doctor. I told him that my pain is spiraling and that the meds aren’t touching this.

At the same time, the anesthesiologist came into the room to checkup on me, and took part of the conversation. As they looked at the swelling, he said “hang on a sec”. The anesthesiologist came back about 15 minutes later with Ketamine. This was the first time I’ve ever had it. All I remember is about 30 seconds into the injection, everything got shut off. It was the craziest experience I have ever had. Since it worked so well, they just kept me on it the entire time I was admitted.

When I was discharged, I continued on Ketamine at Klarisana. What I didn’t realize, was it was reducing the amount of inflammation my body was dealing with. Every time I would have my Ketamine session, for at least a week, the swelling was much less, the pain was much less. As my therapy continued, I started to research its properties in how it works, what it actually does. The interleukin system is one of the main inflammatory signaling pathways that can activate various parts of your immune response to infection, trauma, or things of the like.

Inflammation is normal, however how much of it I was dealing with, and the fact it wasn’t “shutting off” led my conversations with my immunologist, and my ENT on what else we could be doing.

Ketamine led me to Dupixent. Which works in a lot of the same ways as Ketamine, but without the psychedelic part of it. As I sat at the appointment with my immunologist, he absolutely agreed that the Ketamine is helping, so right then and there, Xolair was out, Dupixent was in. The other thing was the Sajazir. On top of the Posaconazole, and all the supportive, supplements, this gave my body the ability to break free of the inflammation cycle, and allowed my immune system to focus on the fungal infection.

Last week, my bloodwork crept up a bit where a few of the inflammatory markers spiked, and my WBC crept up a little to 13.2. But that’s far better than where I’ve been since the Mastoidectomy.

Yesterday the Andembry came, in a huge ass box I might add. Around 2:30pm, the educational nurse reached out to teach / observe the administration of it, however, it’s basically the same technique as the dupixent shot.

Insurance sent the denial for coverage this morning, so I guess I’ll have to play the appeal game. It’s just exhausting to have to deal with insurance most times, clearly I need the Andembry & Sajazir. I was beyond swollen, to the point of my body exploding. It’s just extremely frustrating that a doctor diagnoses you, prescribes the medication you need, just to have insurance say “no”. Our healthcare is extremely broken. Insurance played the same game initially with the IVIg, as well as the Dupixent. It’s just exhausting, nothing can ever be easy.