Pathology Report says Possible Cholesteatoma

[KillMetatron]

Had CH for over 12 years now.  In Fall of 2018 I found relief during a cycle by spraying hot water from the shower directly into my CH-side ear canal (I would sit in the shower for 30-45 minutes, spraying into my ear, until the end of the attack).  From that point on, I continued pursuing the ear connection and what this meant.  In 2020, I requested a Eustachian-Tuboplasty, which I believed would provide relief from the headaches.  I was told no, diagnosed with TMJ, and sent away.

I purchased a Zök device during a particularly painful and high-frequency cycle in early 2021.  It provided relief on 1st use, but soon after it did much more than provide relief, it began to suck something very large out of my ear, I could only hear and feel it.  The sounds were incredible, several times a loud crashing sound, but most other times long, drawn-out, sounds of something sliding out bit-by-bit.  I began to find liquid in the Zök device and once had a small amount of liquid discharge on my pillow.

I purchased several ear cameras, a beBird and a Spade, and began to pull out white clumps from my ear over the course of 6 months.  I also continued to use the Zök daily during this time, sleeping with the Zök inserted, replacing it every few weeks because the suction strength wore out.  Whenever I used a new Zök, the sounds returned and more white clumps and liquid were removed.  The liquid was foul-smelling at first, but soon became odorless.  This entire period I had headaches, but not crippling 10s like before.

I during this time I was repeatedly told by multiple doctors that ear problems are not affecting my headaches and to stop messing with my ear, despite my personal testimony that I was having frequent headaches that were relieved by using the Zök.  My 1st doctor said they saw nothing, the 2nd doctor said he saw a possible polyp, the 3rd doctor also saw what he believed was a polyp and the 3rd doctor conducted surgery in February to remove it, but I peeked into my ear after surgery and still saw it.  The headaches remained during this entire time.

In May 2022, after adamently insisting on the Eustachian-Tuboplasty, I had the operation and found relief for about 30 days (the only period of relief since early 2021).

In June 2022, I purchased a Saunders-Paparella Hook, .33 mm, 90°.  I carefully tried it in my ear, but did not have much success.  I continued to use the Zök every day, and every few days used the Spade (with a modified, smaller tip) to pull out debris.

At a doctor's appointment in July, I reported my activity and again mentioned Cholesteatoma and was told that that's not what it was.

Frustrated, I began to use the .33 mm Saunders-Paparella Hook, and was able to much more effectively pull out large pieces of tissue.  I immediately returned to the Hospital and they said something along the lines of "Wow, there definitely is something there.  We need to order a biopsy to rule out Cholesteatoma."  The report did not rule out Cholesteatoma.

I am in for a long process now, but this Cholesteatoma is likely the key to my Clusters.  I have had multiple scans, CT and MRI, and they missed it.  If there is a way to explore this, please do it.

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Some information on my Clusters:

-Mushrooms and LSD did help put them into remission for 6+ months

-Right-side Nasal Congestion, Right-Side Eye Closing and Redness accompanied them

-Oxygen did not help

-Imitrex Nasal Sprays helped temporily, but soon became ineffective.

-Imitrex Injections worked 99% of the time, but began to cause rebound headaches and I was using several injections a day, which was a big problem

-Cycle:  1-2 a day, every day, every 6-12 months. 2009-2017 (Remission induced by Mushroms/LSD)

2-3 a day, every day, every 12 months.  2017-2021 (Remission induced by Mushroms/LSD)

3+, every day.  2021-Zök