Jeanie's Dreams

For a recap see Stop and smell the coffee part 1

My personal journey dealing with Anosmia

My first post about my anosmia was in January 2021.

I followed up with the ENT doctor several times. He pretty much stayed with the same diagnosis. He retired and a new doctor took his place. By this time, I started dealing with new symptoms. Phantom smells that would last for days, random moments of clarity, and a constant sinus headaches. She (the new doctor) basically looked at my chart and gave me an additional sinus spray. She also said the new symptoms could be my body trying to heal. Time will tell.

From early 2021-present

I had decided there was really no point in spending money on a specialist if they couldn’t do anything for me. I followed up with my primary care doctor on a regular basis. Approximately every 3-4 months I would get desperate for relief from the sinus headaches, swelling, earaches, scratchy throat, etc. she would almost always give me antibiotics, and occasionally a steroid shot or steroid pills.

I want to add this information really quick because it is relevant- about every 10-12 months I get a pain block done. This includes a healthy dose of steroids. However- this last year I went about 15 months between shots (not by choice – that’s a different story)

Various degree of different symptoms that I have dealt with-

These symptoms are pretty constant-
- sinus headaches, swelling, earaches, scratchy throat, etc. They would get worse over time. Until I would go to the doctor. The cycle would start over once I completed the medication.
These symptoms are less common-
- Phantom smells- There were times this was absolutely unbearable. Example-Smelling burnt grease for 3 days no matter where you are at or what you are doing.
- A stuck smell- I would get a whiff of something. And no matter what I did, that scent would not go away.
These are symptoms I would experience if I was prescribed steroids (a shot or pill, not sinus spray). The pain block would also trigger the below symptoms.
- The first day or 2- sinus pressure (swelling) would ease up
- The next 3-5 days – I would be completely overwhelmed with every scent. Now this one may seem like no big deal. But after having a blank pallet for so long, this is one of the most dreaded. My pallet can not determine one fragrance over another. Shampoos, cleaning supplies, deodorant, candles, the AIR, dust, etc. becomes one massive stink soup. There were times I would have to mask up or hold a washcloth over my mouth and nose to tone it down.
- Once my sinuses started refamiliarizing itself with aroma, I would start smelling normal (or as normal as can be expected). This would last for the duration of me taking the medication. Once I completed the steroids, it would take a few days for the swelling return. Slowly loosing smell, back to a blank pallet. Back to the constant symptoms.

I finally had enough of this cycle and requested my primary care doctor for a recommendation to a new ENT doctor. (They offered before, but I was convinced they couldn’t help.) An appointment was made and off I go.

At first the ENT doctor was leaning toward the same diagnosis. But he continued to listen to my story. I could tell I was giving him something to think about. From what I understand, If the scent receptors are permanently damaged, no amount of steroids would allow you to smell. Also, the constant swelling is not normal. Before getting into new test, he put me on a 30 day antibiotic and a steroid sinus rinse. The next 30 days I followed instructions, but when I went for my follow up, I was actually worse. The pressure was unbearable. I went for a CAT scan. This is where I’m at now-

There is something not healing in my sinus cavity. My sinuses are staying in a constant swollen state. I will be having surgery May 31^st. Actually 2 surgery’s, they will also be straitening my nasal cavity at the same time. The ENT doctor says that the surgery should help tremendously with the swelling, airflow and a slight chance help my scent receptors. He is optimistic that there isn’t permanent damage. This all started in April 2019. Hopefully it will end after recovery June 2023.