Re: Non-surgical options

[Guest guest]

In a message dated 04/09/2002 2:05:53 AM Eastern Daylight Time, goldman_rp@... writes:

It simply doesn't make any sense that an infection cannot be treated

Hello ,

I think therein lies your misconception: cholesteatoma is not an infection. Chronic infections create conditions which are ripe for the development of cholesteatoma, but it is not, itself, an infection.

It's early in the morning as I write this, so I hope this is the correct link: Cholesteatoma. There are also lots of great links under Bookmarks on this group's home page, but this one has a pretty concise definition (note that this is a "Tumors" page)..."a benign growth of skin in an abnormal location", made up primarily of dead cells and keratin.

Kinda gross, really, and I do understand your disbelief. My current ENT has his office set up so that when he goes into your ear, you can see it on a TV monitor (fascinating, though some things are better without a visual - the noise was bad enough!). I have seen my c-toma, and it looks just like in all the pictures, which I find reassuring because - in all honesty - there were times with my 1st 2 surgeries that I wondered if there was anything there at all. I liked my ENT, but it seemed like every time he looked in my ear he wanted to cut me open.

I'm running off at the mouth, but good luck and please don't neglect this. Your frustration is shared, believe me - my pet peeve is the faulty eustachian tube thing. There is no surgery to correct this, just surgery upon surgery to keep repairing the damage or they can just hollow it out and leave you with an open cavity. I mean, really - they can go in & install prosthetic hearing devices, how about developing a prosthetic eustachian tube? Wouldn't that meet the goals of a "safe, dry ear"? My ENT chuckled & said he'd be rich if he could fix eustachian tubes and he wouldn't have to work anymore.

Good luck.

[Guest guest]

just a couple of points to add to those already

mentioned....yes...tumour...yes...benign..yes...yes..yes.

perhaps the first thing to point out is that cholesteatoma is always

invariably treated conventionally first. this is quite a big gripe with a

few of us here. it is generally treated with some form of topical

fluid...sometimes antimicrobial, sometimes antifungal and sometimes

combination therapy.

another thing to point out is that polyps are a common occurence in the

c-toma patient. polyps can be the cause of moisture in the ear, and often

coincide with a fungal infection.

francesca, had a polyp kinda fall out at christmas time....and one came out

last night. this was causing a damp environment in the " cavity " she has, and

dead skin was collecting and forming a horrible " porridge " type discharge.

prior to this.....we had no experience of polyps, though there was frequently

moisture in the ear/cavity. i can only remember one instance of a swab being

taken and sent away for microbiological exam. it showed the presence of

E.Coli....which as far as i was aware was a " gut " bug???

although eustachian tube dysfunction is frequently referred to...it has never

been specifically mentioned in francesca's case. having said this, enlarged

adenoids can add to this problem and hence they are often removed, as was

indeed the case.

around two and a half years ago there was some speak of current research

taking place at havard looking into c-toma. it was concentrating it's

efforts on the sufferers immune status, investigating the possiblity of some

kind of auto-immune problem, i imagine along the lines of lupus or heinoch.

having said all this, yes i understand the point you are making and to a

degree agree with you, that if you could prevent/treat the infection, then

you may be able to avoid the formation of c-toma in the first place.

but....sloppy scientists or not, medicine is not an exact science. follow

this avenue please...i would love to hear what you manage to find out....and

i'm happy to assist if i can by requesting that a swab is sent away for

culture next time we're at the ENT if it helps at all?

another problem that has been partly covered by the other responses is...that

c-toma has no blood supply of it's own and for that reason systemic therapy

doesnt generally work, it is felt that only the outside few millimetres of a

c-toma are responsive to any topical applications so they aren't always

successful.

unfortunately....as has already been said....and i can only echo, if you do

indeed have c-toma, then surgery really is youre only sensible option...and

if you leave it too long, it will become your only option. no one here would

wish the surgery on anyone and we have all looked for alternatives. no one

here has consented to this blindly or naively and if there was any way out of

it we would all go there. i wish you every success in your search for

alternatives....but dont rule out surgery, give it a fair hearing and ask for

second opinions. the very best of luck and please do keep us posted as it is

a very interesting line of enquiry.

regards

julie

[Guest guest]

Hi

Welcome to the group.

Racheal has quite rightly said that this is a tumour, albeit benign.

The cholesteatoma does not have a blood supply, so only topical

antibiotics will have any impact on the infection of the c-toma itself.

However, these will typically only penetrate 1 to 2 millimetres into the

c-toma, which is usually a very small percentage of the overall mass of

the c-toma.

I would not advise you to put off surgery. The longer you leave it, the

more time you give the c-toma to grow. The bigger it gets the more

likely there are to be complications with the the inner ear, facial

nerve, hearing bones, and mastoid bone.

My consultant told me that cholesteatoma was the main cause of brain

tumours in the UK during the first half of the 20th century, as it's

enzymes will eat the mastoid bone separating the middle ear and brain

(if left untreated), thereby allowing fluids to travel between the two.

I understand your frustration regarding surgery. I'm 6 months into 2

years worth of surgeries, each 6 months apart (I have c-toma in both

ears). I'm not going to know what the extent of my hearing loss will be

until all the surgeries are done, and my ears have settled down. It's

like putting your life on hold for 2 years. But better that than a

remaining life expectancy of a couple of decades (I'm 31).

--

Pete

[Guest guest]

Hi, I won't tell you you have multiple surgeries ahead, because I

don't know, but you do need to have one surgery, certainly. If you

are diagnosed with cholesteatoma you need it soon. I would think

within six weeks or so, depending on what your specialist(s) say.

The CT scan may appear to show only fluid. Radiology will read it

this way and report such to your ENT. Is your CT reading showing

opaque in middle ear, attic, mastoid, etc? It can be diagnosed as

fluid, but if you have been dx with cholesteatoma the opaqueness

is probably partly or all cholesteatoma tumor mass. It is not

possible to know with certainty without surgery.

It is my understanding that an MRI is usually not ordered because if

a cholesteatoma can be seen by looking in ear, and if CT is abnormal,

then surgery is indicated. The MRI won't tell them anything that the

surgery would not tell them, and would not rule out surgery, because

they allready know you need it from what they can see with looking in

ear and with CT. Hope this all makes some sense!

One of the very best specialists available thought my son's opaque CT

finding was fluid and scheduled a draining of this fluid

(myringotomy, sp?) It was in fact a very large choloesteatoma. It

was in his attic by brain, middle ear and beginning to invade

mastoid. He is only three. These can grow very fast.

My son's surgeon saved his life. I am still trying to understand and

accept this.

You seem so knowledgable and I am sure you are an informed patient.

God Bless you and good luck!

[Guest guest]

Hey .

I understand your frustration. The underlying causes of Ctomas are a

dysfunctioning Eustacian tube, which creates a retraction pocket in which

epithelial skin cells get caught. They don't exactly know, but either it's

canal wall cells or the outside of the eardrum (which are epithelial

cells) which start to grow in the middle ear space, which is made up of

mucousal membranes. There's also congenital (but that's for the

youngins', who are born with an intact eardrum, but with some skin cells

trapped in the middle ear space), and the cholesteatoma can also form from

scar tissue from an improperly healed eardrum.

the cholesteatoma, being epithelial cells, then starts to grow like skin

cells, shedding off dead ones. but the problem is that the cells are in

your ear, and so the dead cells go nowhere. at some point they start

producing enzymes and lysosomes that start to dissolve tissue in your ear.

i think since you had sinus problems, this contributed to it. True, the

ENTs don't care much about the underlying cause, and they can't do much

for a dysfunctioning eustacian tube. Allergies can contribute to the

problem, but that's just one thing. Chronic infection and wet ears

contributes to the " activation " of the retraction pocket.

But, since you are in graduate school (and i'm a jealous 23 yr old) you

should definitely get resources from your library, such as the medical

journals in your library or online. My mother works in a hospital, and has

access to their medical library. So i've gotten a number of resources

that way, although that was three years ago.

The only treatment is surgery. I hate that as well. How are your mastoid

cells? the cat scan should show if the mastoid cells are ok, or if there

is fluid in there or if the cholesteatoma has invaded. if your mastoid is

ok, you can get a less radical surgery.

The thing about medicine is that it's not a science. (It's torture)

Despite all the advances, it's really an antiquated art. But its what we

have. The thing about infection and things like that, the problem is not

trying to get to the infection now, but preventing it at a stage before it

becomes a problem. Just because we know that certain viruses lead to

cancer and that other infections later affect certain systems, at the

stage it is presented to the doctor, that infection is no longer the big

problem. It is in preventing these things that such information is

important. If the doctors had spent time trying to figure out what was

wrong with Eustacian tube function, how to correct this, how to boost the

immune system and actually culture and target the nasties in our ears,

then maybe we wouldn't be here. But that wouldn't be cost effective

(although it probably would if you consider the number of surgeries, say,

I had)

Perhaps getting your sinuses fixed may help in improving the pneumatics of

your head.

But longterm management: go to your microbiolab, and check out what

microbes are in your ear (actually that's probably a bad idea, but get a

pathologist to do it). You can go for some other opinions, (like if where

you are a grad student there's a medical school, check out the profs

there)

and get the surgery. After that, be sure to keep water out of your ear.

forever. i didn't and i'm going back for a recurrence. get checked for

allergies, and keep pursuing good health!

__________________________________________________

[Guest guest]

Hello ,

Welcome to the group. I'm not going to go into the

c-toma part as it seems plenty of people in the group

have already put in their opinions.

I do have a question for you. Are you able to develop

a way to deliver an antibiotic directly to the

cholesteatoma? That seems to be the main problem in

treating c-toma's non-surgically.

Also, there is a post on www.cholesteatoma.org dealing

with non-surgical alternatives. I can't remember the

case # though. I'll try and find out which case it is

and get back to you.

Michele

--- goldman_rp <goldman_rp@...> wrote:

> Hello all, new member here. I was diagnosed with

> cholesteatoma about 6 months back when I was being

> treated

> for sinus problems. I had sinus surgery first to

> remove nasal

> polyps and have put off the cholesteatoma surgery

> for the time

> being as I'm looking for some alternatives. I'm at

> a relatively

> early stage, the surgeon only needs to go into one

> ear, and the

> other can be managed for the time being without

> surgery. My

> question is more long term management. I've seen

> the cat

> scans and know that the ear needs to be cleaned.

> However, I'm

> wanting to avoid multiple surgeries. I can't seem

> to find much

> information on the cause of the disease though other

> than a

> bunch of hand waving about wet ears, eustasian tube

> function,

> etc. It seems to me a better guess is simply

> chronic infection

> with some microorganism and this, I know, is

> something that is

> treatable. The problem, of course, is getting the

> antimicrobial to

> the affected tissue. I'm a graduate student in

> microbiology, so

> naturally I gravitate towards this hypothesis

> because its

> something that I can get a handle on and deal with.

> I tend to

> think doctors are sloppy scientists, and surgeons

> are not really

> concerned with causation, they just want to cut.

> We're pretty

> certain that heart disease is infection related now,

> and surgeons

> want to cut you up for that as well. So I tend to

> distrust them.

> Anyway, I'm interested if anyone knows of any

> anectodal success

> with non-surgical, antimicrobial treatments. If all

> anyone has to

> tell me is that I have a lifetime of surgeries ahead

> of me (I'm 28

> now), well I'm not so sure I'm going to accept that.

> It simply

> doesn't make any sense that an infection cannot be

> treated,

> especially since the organism in question is

> unlikely to be

> anything exotic (most likely a Staphylococcus or

> Streptococcus),

> and that repeated surgery is the only option. I'd

> appreciate any

> comments. Thanks,

>

>

>

>

__________________________________________________

[Guest guest]

Hello ,

I contacted at the cholesteatoma.org site for some info on

homeopathic remedies and here is what I found out:

Case #69 mentions ginko biloba in a reply and I found a link

http://members.tripod.com/~mawzhang/index-5.html . You have to

scroll down almost to the bottom.

Case #290 - read the follow-up. Goes into detail about his

experience with homeopathic medicine. It's very interesting.

Case #381 - there is a link where you can email this person and find

out his experience with homeopathic meds.

Hope this helps a little.

Michele

> Hello all, new member here. I was diagnosed with

> cholesteatoma about 6 months back when I was being treated

> for sinus problems. I had sinus surgery first to remove nasal

> polyps and have put off the cholesteatoma surgery for the time

> being as I'm looking for some alternatives. I'm at a relatively

> early stage, the surgeon only needs to go into one ear, and the

> other can be managed for the time being without surgery. My

> question is more long term management. I've seen the cat

> scans and know that the ear needs to be cleaned. However, I'm

> wanting to avoid multiple surgeries. I can't seem to find much

> information on the cause of the disease though other than a

> bunch of hand waving about wet ears, eustasian tube function,

> etc. It seems to me a better guess is simply chronic infection

> with some microorganism and this, I know, is something that is

> treatable. The problem, of course, is getting the antimicrobial

to

> the affected tissue. I'm a graduate student in microbiology, so

> naturally I gravitate towards this hypothesis because its

> something that I can get a handle on and deal with. I tend to

> think doctors are sloppy scientists, and surgeons are not really

> concerned with causation, they just want to cut. We're pretty

> certain that heart disease is infection related now, and surgeons

> want to cut you up for that as well. So I tend to distrust them.

> Anyway, I'm interested if anyone knows of any anectodal success

> with non-surgical, antimicrobial treatments. If all anyone has to

> tell me is that I have a lifetime of surgeries ahead of me (I'm 28

> now), well I'm not so sure I'm going to accept that. It simply

> doesn't make any sense that an infection cannot be treated,

> especially since the organism in question is unlikely to be

> anything exotic (most likely a Staphylococcus or Streptococcus),

> and that repeated surgery is the only option. I'd appreciate any

> comments. Thanks,

>

>