Scan Worked and Continued Problems

God I really hated putting that as the title. Still dealing with problems. My head still hurts. My ears hurt. My throat hurts. Between the back of my eyes, hurts.

The only good thing is, is that the scan worked. Here’s what they found:

LEUKOCYTE SCINTIGRAPHY (SPECT/CT, LOCALIZATION OF INFLAMMATORY PROCESS)

EXAM DATE AND TIME: 2/1/2024 14:03 MST

INDICATION: Fungal sinusitis, chronic left inferior orbital mastoiditis, leukocytosis.

TECHNIQUE: 478 uCi indium-111 oxine labeled autologous leukocytes was injected IV. Planar images of the head and chest and SPECT/CT imaging
of the head were obtained 4, 24, 48 hours after injection.

COMPARISON: MRI face and neck dated 11/27/2023

FINDINGS:
There is mildly increased uptake which appears to correlate on CT with some mucosal thickening or mucous retention cyst on the right side of a dominant left sphenoid sinus which appears new from the prior MRI. This is suggestive of mild sinusitis although the activity is difficult to distinguish from physiologic marrow uptake in the
adjacent skull base. There is otherwise physiologic activity in the remainder of the head. No abnormally increased uptake is identified in the mastoid sinuses.

IMPRESSION:
1. Mildly increased uptake which appears to correlate with some mucosal thickening or retention cyst in the right side of a dominant
left sphenoid sinus suggestive of sphenoid sinusitis.

So this is explains my symptoms. I’m so happy that the scan worked, and it was worth my time. So now what? What does this mean?

Surgery.

The Sphenoid is a sinus cavity that forms at the base of the cranium. Which sits behind your eyes, and below the brain. It has “wings” to the formation, but is somewhat big. An interesting piece of anatomy, that I was unaware of, is that’s the main attachment point for many of the muscles for mastication.

The symptoms of sphenoid sinusitis include pain or pressure behind the eyes – the sphenoid sinuses are located near the optic nerve and can be very sensitive. Other symptoms include:

• Headache – the top of the head may hurt
• Watery, swollen eyes
• Runny nose and nasal congestion
• Neck pain
• Post-nasal drip and sore throat
• Teeth pain
• Vertigo or dizziness

Which explains why after every time I eat, my face just hurts. Most likely the drain points of the sphenoid is clogged. I can only assume that what they see in the scan is fungal. It explains why I continue to feel itchy. Gaggy. Just downright shitty. Exhausted. Tired. And still in a lot of pain.

It’s because my immune system is doing the best it can to fight this, but it’s not winning. The vancomycin should have knocked this out if it was bacterial, so I can only guess is that this is fungal.

This morning, I left messages for Dr. Hepworth, via the portal and left a message on the nurse line. A portal message to Dr. Sarid to push Hepworth. I also called Infectious Disease and asked for a phone call from either Kaufman or Becky to push Hepworth. I faxed this to Courtney too. Everyone needs to move. Like now. Again, I cannot wait 6 months to get this fixed.

The only way we can fix this is surgery. But I’m not waiting 6 months to get this done. I’m done fucking around. I’m done with this conservative approach. What’s funny, is the last sinus surgery, I asked Hepworth to take out the Sphenoid. Just open it up. It’s the last hiding place in my head this could be.

He only wanted to do it if it was indicated that there is a problem. Well. Look at scan results. There you go. Again. I was right.

I’m so tired of being right. Telling doctors how to help me. This is just … exhausting.

So what surgery/procedure do I need?

Sphenoidotomy. Now since there are both a left and right side to the sinus, I’m just going to straight up tell Hepworth to open up both sides. I’m done with surgeries. Let’s just do this once, and be done. This won’t spontaneously fix itself. It won’t go away with time. And yes, my symptoms are getting worse. From what I read, this infection can turn serious very quickly.

Let’s see who reacts first … I’ll just update this as time goes on today.

Infectious Disease wins. Telehealth with them @ 12:45pm today. My goal is to leverage them to get this escalated so we can just get this done. If I gotta go to a different ENT, so be it.

2:45pm – Dr. Kaufman had a telehealth with me. She agrees with the way my labs look, my symptoms and the scan results. She is going to hound Dr. Hepworth to see if we can get surgery done ASAP. If not, then she will start me on IV Meropenem, and add Flagyl to cover everything gram positive/negative. From an antifungal standpoint, I’m already on what she would give for this, which is the Posaconazole.