The Worst Alarm Clock

Yup. It’s back. But not the typical everything burns. Eyes, sinuses, throat, jaw.

It’s just the jaw and mouth. It’s the two lumps in the front of my jaw. I feel this inflammation just randomly snaking through my mouth. It pulses, the white crap continues to come out. It’s definitely mold related. I know Hepworth delayed the MRI to see if the posaconazole had any effect, but from what I see in the imaging, and what the radiologist reported, it’s doing a minimal amount.

Last night I did something different sinus wise. 3 rinses. 1 just hypertonic saline, next I add iodine, and lastly a bottle with the amphotercin. I did this after Anies pushed a bunch of stuff out of my face. No. It doesn’t come out externally, it empties into my sinuses. It’s the most alien feeling in the world. It’s disgusting. At the same time, it feels so fucking good.

More than half the time when she does this, she just puts me out. I’ll fade in and out. But usually she will say “you’re snoring”. “No I’m not.” But then I look at my watch, yup. Out cold for 20-30 minutes. It’s the only time I truly feel that I am at peace. Similarly just like when I do ketamine. It’s this state of disconnection, and disassociation. It’s a space in time where you feel nothing, you feel at ease, calm.

The rinse after the rub produces the usual yellowish cement, bright blood, and brownish crud. The iodine part stung a bit, but that’s most likely because there are open wounds up in my sinuses somewhere. It’s not leftovers from the surgery, it’s just what I’ve been continuously dealing with.

As Anies did the rub I started asking her specific questions. As she commonly does this for me almost on a nightly basis, she can feel the inflammation in my “horn”. It’s this extremely hard/soft spot above my left eyebrow. It feels good when she rubs it, but fuck it hurts at the same time. I asked her to feel around my left ear, and jaw. This is where I feel the cysts and inflammation the most. It then runs inside my mouth, along the base of my jaw until it hits “the twins”. Then the inflammation then branches out into my face, cheeks, and nose.

As time has gone on, this inflammation seems to wane, then return. I think this is why my WBC/CRP looks like shit. Because as time has gone on, it’s what’s waking me up every day. The world’s worst painful alarm clock. I’m just glad it’s not AS BAD as it used to be. Where I would feel my heartbeat for a solid hour, on top of my sinuses, face, neck and mouth just feeling as though as if I was covered in fire ants. I still have the typical low-grade fever. It’s only 99F this morning, but I popped a Tylenol anyway. Because it only gets worse throughout the day. You can only have 4000mg of Tylenol a day, I have to be careful with my liver. The last labs I had, my AST is somewhat elevated. But this happens when you’re on all the medications I’m on.

Like I said yesterday, Hepworth is Tuesday. I’m going to have to push him about the inflammation in my face, and the sinuses. Yes. I don’t get stuff out all the time, but I consistently feel pain. I think it’s safe to say what I’m dealing with in my sinuses is fungal. Since what Hepworth pulled out last time, perhaps there’s a small remnant of it up there, bats what’s lighting up my sinuses. Even the radiologist points it out. Here’s the T2 STIR MRI images that shows enhancement within the areas of concern:

Like I’ve said countless times before, I am no doctor, I am no radiologist, but I can look at the previous MRI imaging that I’ve had done over the past 5 years, and some of these enhancements weren’t there before we started removing the Osteoma, or the other two sinus surgeries. But as time as has gone on, you can see the progression of the disease.

I do enjoy looking at imaging if I have to be completely, and transparently honest. Utilizing the T1 and T2 imaging you can see if there are abnormalities. T1 focuses on just fat, whereas T2, focuses on fat and water. There are two primary types of things you need to take into account, on T1, a signal reduction (darker spots), in conjunction with a T2 image where you see enhancement, this is a good indication of an inflammatory, infection, or cancerous process. Since all of my issues have been infectious related, as well as inflammatory, I am not concerned if cancer at this time.

Again, all I’m doing is looking for differences where the radiologist spends maybe at most 15 minutes looking for “major” things, I’m spending the amount time that they should be taking with my case, as my findings are quite subtle. I’ve found things that radiology have overlooked. Hepworth has found many things that radiology has over looked. All we are doing is working together for a common cause, finding where the areas of concern are, and how to address them.

Again is you missed the MRI report before:

It clearly shows there is something going both in my sinuses, and my mastoids. Looking at the imaging from a mastoid perspective, it doesn’t look “that bad”, but it shouldn’t be discounted or downplayed.

The problem with fungal sinusitis, which really the only fix, is surgical debridement. The surgery is known as FESS, or Functional Endoscopic Sinus Surgery. Seeing as how I’ve gone through this 3 times already, I can bounce back quickly from this surgery. But I think when Tuesday comes, my position with Hepworth will be that the main driver is fungal. Paired with immunocompromised immune system, it’s just a matter of time. The main tool of FESS used by an ENT is an endoscope. An endoscope has a light on the tip of the instrument, as well as a camera, which can be displayed on monitors, or can can be used with a direct view through the diopter. Some of the “cool” functional things of an endoscope, is that but turning the instrument from 0 to 120 degrees, which allows an ENT to see from a better angle to visualize the various sinus cavities.

The human sinus anatomy it’s quite complex, and is also a very tight place to operate. So these tools allow ENT’s to navigate this sensitive and delicate nature of this ear of the human face. Prior to sinus surgery, you take a few hits of Afrin, which helps to decongest and shrink the space. Once you’re under, the ENT will also inject a local anesthetic into the mucosal structures as well as steroids to shrink the area so that it’s easier to work on. It really is a tight space up there with limited room.

If you’re curious as to what it looks like, Hepworth recorded my Osteoma removal and removal of the sinus infection. DISCLAIMER. THIS IS A REAL SURGERY THAT I WENT THROUGH. THIS VIDEO IS IS QUITE GRAPHIC IN NATURE. But this does show the level of involvement sinus surgery entails. This specific surgery took over 4 hours to complete.

https://m.youtube.com/watch?v=o4UuCtCtVCs

This video is definitely NSFW, and is age restricted, so you’ll need to sign into YouTube to watch it.

During FESS, a microdebrider is used that “chews” away tissue and is suctioned away. Think of it as a closed metal straw, with a small opening at the tip with “teeth”. Internally the teeth spins inside the outer “straw part” which allows the ENT to be very specific on what tissues can be withdrawn, instead of it being one big yard sale.

Other surgical tools used during FESS are a wide array of surgical tools:

We have to hit this at the same time from the facial approach. The cysts in my face, mouth. The have to be fungal balls. Every dermatological pathology report has always talked about inflammation.

If we can remove as much as the fungal crud from my sinuses, and face, this will only help calm down my immune system. Since I’m a class 4 for almost every mold, this has got to be the process that’s happening. I did get a lot of relief from the October sinus surgery, but going right back into an environment we were in, just basically opened me up to just simply breathe in more to let it find a deeper home.

Perhaps now that we are out of that hazard, this will be the last FESS I need done, on top of that, the discussion with Hepworth, will absolutely be, what we talk about from a surgical approach, we actually execute upon it.

The MRI clearly shows that the previous sinus surgery, he was supposed to do a total ethmoidectomy, but both the radiologist and myself, only see partial (Look at the first MRI image). There should be a complete opening from the turbinates to the frontal sinus. Your ethmoids are a grouping of cells that separate the frontal and maxillary compartments.

So my talk with Hepworth will include:

#1 FESS to include, total right ethmoidectomy, and removal of my sphenoid sinus completely.

#2 ensure removal of all involved tissues throughout my sinuses taking great care he removes anything and everything that may even look like it’s involved.

# 3 Turbinate reduction, as well as tissue removal

#4 Removal of cystic balls around left ear and jaw. Removal of cysts within the oral cavity, as well as investigate this “disturbance” that’s been under my tongue. This only showed up after the removal of my implants, so my only assumption it’s a piece of the drill bit that broke off during the procedure.

This is what was supposed to happen last time, but certain items were either overlooked, undertreated, or just quite simply not done. I need to make the strong impression with him that these items NEED to be addressed. We can’t pick and choose, nor take a conservative approach with resolving this once in for all. If we don’t address the areas of concern, this allergic vicious cycle I’ve been stuck in, I’ll never escape.

I should not have to keep getting sinus surgery every year, that’s absolutely not sustainable. We need to just get this done. Be aggressive, and ensure everything is removed that can be. I don’t care if the surgery takes 5 fucking hours. Let’s just get everything out we can.

No. Anies won’t be coming with, but she’s given me the ability to advocate my needs to Dr Hepworth. Her presence in the room is extremely helpful, but it’s also not sustainable that she needs to be at every appointment, however if Hepworth starts pulling the same bullshit he did last year, where each appointment it was always “oh we will talk about that next appointment”, I’ll absolutely not hesitate to ask to have her come and ask the same difficult questions like last time. I’m just tired of doing this every year. Hepworth just needs to take my case with a sense of urgency, instead of making me wait 6-8 months to actually take action.

I understand he’s a busy guy, but using the portal to communicate to him leaves an official paper trail of me telling him there is a problem. They were supposed to call me last Wednesday, but as per usual, no call.

This dysfunctional operation of his office is worrying. But he’s the only ENT outside of Lupo who helps. Lupo’s office gets me in right away, and he addresses my concerns immediately. I just wish Hepworth would operate in the same way.