Cholesteatoma - Ear cyst - is there help beyond surgery
forum post
Cholesteatoma - Ear cyst - is there help beyond surgery
Published on 02-06-2016
"anon231647" - this is their first post.
Hello - First off - Thank you for creating this site. I found it because I had a question about serrapeptase - it has answered many of my questions about all kinds of subjects - and I found the explanations of where the meridians were and how to locate the points on me - valuable and painful! Ha Ha!
Ok - to the point. A year ago I was shown through the aid of a powerful tiny microscope - a cyst that is growing behind my eardrum - It has encased the hearing bones (I am now deaf in that ear although the cochlea still transmits vibration when a tuning fork is placed on my forehead).
The ENT states the only way to deal with this cyst (that acts like cancer and a tumor) is through an extremely invasive surgery - and that it needs to come out as it will continue to grow - doing more damage along the way - eventually it can eat the bone that separates the brain from the infected ear area and you end up with meningitis or staff infection.
I was told surgery was URGENT - freaked me right out ----but that has been over a year ago ---- so much for our speedy medical system in Canada! ---- actually, I am grateful as it gave me the time and opportunity to look for other ways of dealing with it. Yesterday the call came with a surgery date - I haven’t called back as I really don’t want it. Once they start cutting your head open, it appears that they go in for a 2nd look in about 6 months - and then about every 6 months after that you need to go to ENT’s to have it cleaned out and looked at to check to see if it has come back. It has a strong come back ratio as it is hard for them to get all of the cyst out of all those tiny places in there. So you can end up having operation after operation. So un-fun.
I said that I wanted to try other ways - ENT said good luck - I would be the first. Hmm. I suspect it just hasn’t been documented by western medicine - and it would be lovely to clear it up without an operation - and give others hope for an alternative way of dealing with it…
During the last few months I have used serrapetase in hopes of dissolving the cyst and thinning mucus, tumeric and vit c, - to reduce inflammation and assist my nose - colostrum as an upper respiratory aid, kombucha and kimchi for all the healthy bacteria ( we make our own so I have lots every day!) and breathing techniques as natural methods for dealing with my chronically stuffed up and yet runny nose —prior to this, I used a steroidal nose spray for about 8 years. I stopped cold turkey a few months back as it was no longer unstuffing me - I mostly felt a pressure in my head/sinuses. Makes me wonder if it caused the cyst.
I take time throughout the day to stimulate any point I find that hurts along what I “think” are the meridians - and some are so crazy painful - and yet it is also like a good hurt.
I have felt better - I can breathe through my nose most of the time now rather than being congested. I have had major tinnitus and that has decreased - not so loud and roaring now - and not constant.
I would like to know if you have ever “knowingly” treated anyone with this. Apparently it is very hard to detect because you are sick in other ways before they ever find it. I am almost 50 - a female - and have been very sick off and on throughout my life. It was like waves. I have had hearing loss from an elementary school age that increased to the deafness I have now. The ENT suspects it may be a congenital form but that is rare. I do have some abnormality up my nose that made him ask if I had broken it. ??? I don’t know. The passage is much narrower on right side. My ear canals are also very tiny.
As I stated earlier - I would love to avoid surgery - and make my ear/s healthy as can be - me as healthy as can be. I also feel good right now — it has been about 3 years of feeling bad/sick so I would like to ride this feeling to vibrant health.
I am open to going to an acupuncturist - ideally I would like a referral/reference from someone who knows they are good/cool/ knows their stuff - possibly has experience with this type of thing. How do I locate someone like that in my area?
There is a closed community on Facebook of about 2000 others from around the world who have cholesteatoma - and they would be thrilled to be offered hope. Their nickname for themselves is Franken"ears| - or stinky ears (thank goodness mine doesn’t smell!) Mostly they post pictures of their nasty ear operations! Yuck! And commiserate with each other. So hope would be welcome! An alternative to surgery would be amazing and incredible and so so so much better!
I know you don’t know my whole history but this is very wordy already - and I suspect I should be telling it to the person who will assist me with getting balanced.
I thank you in advance for the help and direction that you will give.
I’m glad I found your information!
Linda
Comments / Discussions:
comment by "ChadD" (acupuncturist)
on Feb 2016
Generally speaking cysts and growth of this nature have corresponding treatments in Chinese Medicine (both acupuncture and herbal medicine) and there are a host of treatments for a variety of ear issues including infections, tinnitus, etc.
But treatment can be slow in some cases and more concerned with the causes of the imbalance than the symptoms in general terms. And with more established cysts surgery is at times superior to deal with the immediate issues whereas Chinese Medicine can work on a deeper level to avoid future issues. But this will depend greatly on a per patient basis, their underlying health issues and their comfort with surgery, etc.
Our page on acupuncture for otitis media will give a general overview of how cholesteatoma (which would generally be considered a collection of “damp” in Chinese Medicine terms) would be approached. Many people will fall into the lv/gb damp heat pattern (but not all). For more on the concept of dampness you can read “My Spleen is What?” - the organ system primarily involved in dampness issues.
There are also a number of herbal approaches both drops in the ear and internal formulas but these are hard to generalize about as they need to be directly related to the diagnosis in Chinese Medicine terms.
I do feel that treatment, however, is worthwhile whether or not you choose the have the surgery. If you do go the Chinese Medicine route you will want to see someone who does both acupuncture and herbal medicine and give the treatment 4-6 months.
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comment by "anon231647"
on Feb 2016
Thank you so much Chad ---- now to find an acupuncturist who does herbs in
my area ---- 4 to 6 months of treatments seems like nothing compared to
surgery. Until then - I wanted to ask about self acupressure ---- I
thumb walk over the areas - and press too — but have never managed the 3
to 5 minutes suggested in your writings — so painful - like sparks. Can
I continually come back to these places throughout the day and rework them.
- can you overdo it? — also something rather odd — on left foot - I
think it is ST43 - zaps me so bad - feels like a lump in there – good to
rub it and try to work that out? Again — thank you for the information
you offer on your site. Most helpful. I am looking forward to resolving
these issues. It makes sense to me what is going on. I think it will be
exciting to see and feel the changes.
comment by "ChadD" (acupuncturist)
on Feb 2016
Generally speaking for this and many other conditions acupressure is simply not going to be that helpful. You can’t really overdo acupressure per se, but it is often limited in its effect. Besides proper acupuncture and Chinese herbal treatment, you will get the best response with dietary change, eliminating dairy and other damp/inflammatory causing foods (salads, smoothies, raw food, etc.).
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comment by "anon231647"
on Feb 2016
I hear and understand what you are saying — I am not planning to self
treat myself for the cholesteatoma only to bring myself relief until I see
a TCM practitioner - and to use in between visits. I live a minimum of 1
to 2 hours away from any place that would have one. Pressing/thumb
walking certain places makes my nose drip immediately - or brings me clear
breathing. This is heaven! As a side note - we had leaking pipes in our
house for a number of years. All of my family members would make fun of me
when I would say that there was a water problem again — until we would
find the leak. My body knew about it way ahead of finding them. The good
news is that all of the water lines in our house have been changed over and
all leaks are gone. I can tell! It has made a vast difference. That was
the external damp but I know that my own eating habits were lousy since
childhood — I considered sugar a food group (bad girl). I find when I
eat sugar (and it is literally like a constant craving ), I get congested
right away - so for the most part I have dropped it. I have never been a
big dairy eater so that one is much easier and I dislike cold smoothies!
Weird how western thinking is that raw food/salads are so good for you
----- is kimchi considered raw even though it has been transformed through
the fermentation process? I like it a lot so hopefully not. Is there info
on your site about the damp causing foods? ==== Again ==== Thank you!
comment by "ChadD" (acupuncturist)
on Sep 2016
Yes with acupressure you can do smaller amounts of stimulation more often throughout the day. With proper points, etc. you cannot really overdo it in my opinion but there is a limited amount the body will listen to so more isn’t necessarily better.
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comment by "ChadD" (acupuncturist)
on Aug 2018
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