cholesteatoma

[messtafarian]

Cholesteatoma is a "benign" proliferation of "keratinizing squamous epithelial cells" inside the middle ear.

According to the literature, they are caused by frequent chronic ear infections and eardrum perforations. Eventually this thing grows in your ear; they say it's "cystlike" but it contains nothing, it's just extra skin.

It is really not so benign, because it continues to grow until it either wraps around the bones in the ear or starts to invade the skull into the brain, or carry infection into the brain.

I had one most of my adult life. It was indolent and just hung around until I decided to do something about it. The only option is to get it cut out. Depending on its size when it's handled, this can involve drilling into the skull and into the mastoid bone where infection can get trapped.

I got this surgery eighteen months ago.

Now it's back.

Cholesteatoma really *often* recurs and people with this thing end up traipsing back to surgery every couple of years their whole lives.

There absolutely *has to* be an answer that is ultimately nonsurgical but I have not seem one reference to anybody trying anything at all else besides getting it removed.

Anyone with any experience with this?

 

[messtafarian]

Nobody, huh...

Sigh.

 

[haidut]

Cholesteatoma is a "benign" proliferation of "keratinizing squamous epithelial cells" inside the middle ear.

According to the literature, they are caused by frequent chronic ear infections and eardrum perforations. Eventually this thing grows in your ear; they say it's "cystlike" but it contains nothing, it's just extra skin.

It is really not so benign, because it continues to grow until it either wraps around the bones in the ear or starts to invade the skull into the brain, or carry infection into the brain.

I had one most of my adult life. It was indolent and just hung around until I decided to do something about it. The only option is to get it cut out. Depending on its size when it's handled, this can involve drilling into the skull and into the mastoid bone where infection can get trapped.

I got this surgery eighteen months ago.

Now it's back.

Cholesteatoma really *often* recurs and people with this thing end up traipsing back to surgery every couple of years their whole lives.

There absolutely *has to* be an answer that is ultimately nonsurgical but I have not seem one reference to anybody trying anything at all else besides getting it removed.

Anyone with any experience with this?

Oral vitamin A seems to have treated it in humans. Also, local (topical) application of vitamin A and vitamin D. I would talk to your doctor first but I see no reason not to try oral vitamin A and some drops in your ear using EstroBan or buying some vitamin A and D drops and mixing them. Oral dosage for vitamin A was 25,000 IU for 2 weeks, which is not high at all. The vitamin D study hints that cholesteatoma may be caused by endotoxin (LPS), so anything else that reduces endotoxin may help as well.
I can't get any info on the oral vitamin D dosage right now since it was in vitro and I have to find in vivo bioavailability data for humans.

YMMV but this seems encouraging. Good luck!

1. Vitamin A (oral)
http://www.ncbi.nlm.nih.gov/pubmed/23120625
http://www.ncbi.nlm.nih.gov/pmc/article ... cle_56.pdf
"...We treated five patients of cholesteatoma with vitamin A oral supplements and no other treatment and found significant resolution of cholesteatoma in four patients. Though this may not be an explanation in every case of cholesteatoma, our study highlights that there is a subset of patients with vitamin A deficient cholesteatoma who could substantially benefit from intervention with this wonderful vital amine."

Vitamin A (topical)
http://www.ncbi.nlm.nih.gov/pubmed/11568660
"...Local treatment reduces the risk of cholesteatomas in ligated gerbilline ears. Cortisporin and vitamin A are equally effective as local treatments."

Vitamin D (in vitro study)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1526486/
"...The present results showing the suppressive activity of VD3 on the production of MMPs, which are responsible for tissue remodeling, strongly suggest that VD3 would be a good candidate for an agent in the medical treatment of, or prophylaxis for, cholesteatomas."

 

[messtafarian]

Thanks Haidut!

I was thinking about Vitamin A since I read Peat say somewhere that it's essential to skin tissue differentiation but I was unsure about the dosage or if there was any history of success with it. How did you get that pubmed search? I've poked through all kinds of papers and not found anything close. All I could find was surgery histories.

I've also been taking a ton of D. I haven't supplemented with A before, ever...can't hurt. I have to go see an ENT on Monday.

 

[haidut]

Thanks Haidut!

I was thinking about Vitamin A since I read Peat say somewhere that it's essential to skin tissue differentiation but I was unsure about the dosage or if there was any history of success with it. How did you get that pubmed search? I've poked through all kinds of papers and not found anything close. All I could find was surgery histories.

I've also been taking a ton of D. I haven't supplemented with A before, ever...can't hurt. I have to go see an ENT on Monday.

Can't remember the exact search, but since the condition is a fatty mass and associated with estrogen and endotoxin I thought that retinol and vitamin D would be helpful and I found the studies. On that note, apple cider vinegar may also help but I can't search for studies right now. Apple cider vinegar has been used topically to dissolve fatty acid buildup on the skin.

 

[messtafarian]

Interesting. This is tricky because the eardrum has burst so putting anything in the ear is painful. If I had been paying attention to this months ago I would have been smearing vitamin a all over my head :)

 

[Coir]

Hi messtafarian did you have any success with this?
I have the same thing and its a terrible thing. While mine seems mild right now I can only imagine it getting worse. The thought of the getting the surgery is too much for me and the risks do not seem worth it, if it got worse due to losing my hearing bones I would rather go back in time and not have it for sure. I also have pretty bad eustachian tube dysfuncntion, constant clicking and fullness of my tubes. I refuse to believe its just some error in the bodies system and cant be treated.