Scar Tissue

[Guest guest]

> The therapeutic magnet is very good at scar removal.

>

What strength magnet would this be or what type? J.

[Guest guest]

Re: scar tissue

> > The therapeutic magnet is very good at scar removal.

> >

>

> What strength magnet would this be or what type? J.

>

The strongest you can. Do not believe too many of the published numbers,

though - there is no standard measurement method, so each can devise his own

to show any numbers he desires. I came across 10,000 Gauss magnets that

were weaker than 3500 Gauss ones...

Field shape is also important. you need penetration (even for skin

treatments and meridian energizing). I consistently use Magnetizer's... I

have no other relation with them, besides buying their products through our

local agent.

Ronen.

[Guest guest]

Judy,

You can also look into trigger point injection therapy. My husband had scar

tissue built up from his surgery and was in a lot of pain and had major

muscle spasm. The therapy is done by first numbing the area and then going

in with a needle and breaking up the scar tissue. It was painful after the

injections, but the results were great. He now has mobility in his back that

he did not have before the treatments.

You can do a search on " trigger point therapy " to see if you can find someone

in your area doing the procedure.

If you need more information I will be happy to look into it for you.

Flo

[Guest guest]

<cures for cancer >

From: " JudyK " <uno-man@...>

Date sent: Tue, 4 Sep 2001 07:05:40 -0400

Send reply to: cures for cancer

Subject: scar tissue

> Hi group... does anyone out there have any knowledge about radiation

> damage= (fibrosis)...what can reduce it ??? I have scarring in my neck and

> it is co= mpressing nerves..therefore collapsing a vocal cord and altho it

> is somethi= ng I can live with I'd like to try to do something about it.

> At present I a= m putting vitamin E on it every day, but I know results

> will take quite som= e time. The fibrosis seems to be continuing to form

> in the same area of the=

> neck. Thanks for any input. Judy Hoffman

Hi,

My sister prevented such damage from raditherapy by using a topical

cream

containing beta glucan. Perhaps it could be tried on your tissue damage. Also

consider

oral beta glucan + vit C to increase interleukin (IL) production.

1: Neurosurg Clin N Am 2001 Apr;12(2):329-339

Treatment of recurrent peripheral nerve entrapment problems:

role of scar formation and its possible treatment.

McCall TD, Grant GA, Britz GW, Goodkin R, Kliot M.

Department of Neurological Surgery, University of Washington School of

Medicine,

Seattle, USA.

Surgical management of peripheral nerve entrapment syndromes is usually

successful, but the recurrence of symptoms after initial improvement can and

does

occur. Extraneural fibrosis is one possible cause of recurrent peripheral

nerve

problems as a result of nerve compression or tethering. Several approaches to

prevent extraneural scarring after surgery have been studied, including

wrapping the

involved nerve with a graft, the application of various chemical compounds,

and

radiation. ADCON-T/N, an antiscar bioabsorbable gel device was evaluated in a

retrospective clinical review. Sixty-seven percent of patients treated with

ADCON-T/N

after reoperation of a peripheral nerve experienced prolonged clinical

improvement

compared with 50% of patients who did not receive ADCON-T/N. These preliminary

results suggest that ADCON-T/N may prove to be clinically useful in the

surgical

treatment of peripheral nerve problems. Additional more rigorous clinical

studies are

necessary, however.

Zhonghua Zheng Xing Shao Shang Wai Ke Za Zhi 1999

May;15(3):173-174

[The effect of intradermal injection of collagenase in implanted

hypertrophic scar in nude mice].

Wu J, Chen D, Wu Z.

Department of Physical Medicine and Rehabilitation, Southwest Hospital, Third

Military Medical University, Chongqing 400038.

OBJECTIVE: Effects of collagen degradation in hypertrophic scar by intradermal

injection of collagenase were observed. METHODS: Hypertrophic scar was

implanted into nude mice and collagenase was injected locally. Light and

electron

microscopic observations were carried out. RESULTS: Collagen degradation in

hypertrophic scar by intradermal injection of collagenase was observed. The

implanted scars became soft, thin and small. CONCLUSION: These results

suggested that local injection of collagenase may be a useful therapeutic tool

for

hypertrophic scar.

Zhonghua Zheng Xing Shao Shang Wai Ke Za Zhi 1999

Nov;15(6):434-436

[The effects of IL-1 on synthesis of collagen in scar-derived

fibroblasts].

Yang D, Luo J, Zhu J.

Department of Plastic Surgery, Nanfang Hospital, First Military Medical

University,

Guangzhou 510515.

OBJECTIVE: To investigate modulation of cytokines on biological activities of

scar-derived fibroblasts. METHODS: This study focused on the effects of

interleukin-1 (IL-1) on collagen biosynthesis, nucleic acid, and cell organs

of

fibroblasts. RESULTS: The results showed the IL-1 could reduce not only the

collagen synthesis of fibroblasts, but also quantity of nucleic acid.

CONCLUSION:

The authors confirm that IL-1 is a cytokine with down-regulation effect on

scar

formation, and suggest that IL-1 can play an important role in prevention and

treatment of scar.

moonbeam

[Guest guest]

Judy,

Depending on where the scar tissue is in the neck, a skilled massage

therapist may be able to help break down the scar tissue or make it more

elastic by using cross fiber or longitudinal release techniques. That's

either going with the muscle fibers or against it to produce a relaxing of

the tightening scar tissue. You might want to hunt down a massage therapist

in your area that knows those terms. If there is any cancer present in the

area it would probably be contraindicated since it may help the cancer

spread.

Wish I were there to give it a try!

Steve son

>From: moonbeam@...

>Reply-cures for cancer

>cures for cancer

>Subject: Re: scar tissue

>Date: Wed, 5 Sep 2001 07:24:02 +1000

>

> <cures for cancer >

>From: " JudyK " <uno-man@...>

>Date sent: Tue, 4 Sep 2001 07:05:40 -0400

>Send reply to: cures for cancer

>Subject: scar tissue

> > Hi group... does anyone out there have any knowledge about radiation

> > damage= (fibrosis)...what can reduce it ??? I have scarring in my neck

>and

> > it is co= mpressing nerves..therefore collapsing a vocal cord and altho

>it

> > is somethi= ng I can live with I'd like to try to do something about it.

> > At present I a= m putting vitamin E on it every day, but I know results

> > will take quite som= e time. The fibrosis seems to be continuing to form

> > in the same area of the=

> > neck. Thanks for any input. Judy Hoffman

>

> Hi,

> My sister prevented such damage from raditherapy by using a

>topical cream

>containing beta glucan. Perhaps it could be tried on your tissue damage.

>Also consider

>oral beta glucan + vit C to increase interleukin (IL) production.

>

> 1: Neurosurg Clin N Am 2001 Apr;12(2):329-339

> Treatment of recurrent peripheral nerve entrapment problems:

> role of scar formation and its possible treatment.

>

> McCall TD, Grant GA, Britz GW, Goodkin R, Kliot M.

>

> Department of Neurological Surgery, University of Washington School of

>Medicine,

> Seattle, USA.

>

> Surgical management of peripheral nerve entrapment syndromes is usually

> successful, but the recurrence of symptoms after initial improvement can

>and does

> occur. Extraneural fibrosis is one possible cause of recurrent

>peripheral nerve

> problems as a result of nerve compression or tethering. Several

>approaches to

> prevent extraneural scarring after surgery have been studied, including

>wrapping the

> involved nerve with a graft, the application of various chemical

>compounds, and

> radiation. ADCON-T/N, an antiscar bioabsorbable gel device was evaluated

>in a

> retrospective clinical review. Sixty-seven percent of patients treated

>with ADCON-T/N

> after reoperation of a peripheral nerve experienced prolonged clinical

>improvement

> compared with 50% of patients who did not receive ADCON-T/N. These

>preliminary

> results suggest that ADCON-T/N may prove to be clinically useful in the

>surgical

> treatment of peripheral nerve problems. Additional more rigorous

>clinical studies are

> necessary, however.

>

> Zhonghua Zheng Xing Shao Shang Wai Ke Za Zhi 1999

> May;15(3):173-174

> [The effect of intradermal injection of collagenase in implanted

> hypertrophic scar in nude mice].

> Wu J, Chen D, Wu Z.

>

> Department of Physical Medicine and Rehabilitation, Southwest Hospital,

>Third

> Military Medical University, Chongqing 400038.

>

> OBJECTIVE: Effects of collagen degradation in hypertrophic scar by

>intradermal

> injection of collagenase were observed. METHODS: Hypertrophic scar was

> implanted into nude mice and collagenase was injected locally. Light and

>electron

> microscopic observations were carried out. RESULTS: Collagen degradation

>in

> hypertrophic scar by intradermal injection of collagenase was observed.

>The

> implanted scars became soft, thin and small. CONCLUSION: These results

> suggested that local injection of collagenase may be a useful

>therapeutic tool for

> hypertrophic scar.

>

>

> Zhonghua Zheng Xing Shao Shang Wai Ke Za Zhi 1999

> Nov;15(6):434-436

> [The effects of IL-1 on synthesis of collagen in scar-derived

> fibroblasts].

> Yang D, Luo J, Zhu J.

>

> Department of Plastic Surgery, Nanfang Hospital, First Military Medical

>University,

> Guangzhou 510515.

>

> OBJECTIVE: To investigate modulation of cytokines on biological

>activities of

> scar-derived fibroblasts. METHODS: This study focused on the effects of

> interleukin-1 (IL-1) on collagen biosynthesis, nucleic acid, and cell

>organs of

> fibroblasts. RESULTS: The results showed the IL-1 could reduce not only

>the

> collagen synthesis of fibroblasts, but also quantity of nucleic acid.

>CONCLUSION:

> The authors confirm that IL-1 is a cytokine with down-regulation effect

>on scar

> formation, and suggest that IL-1 can play an important role in

>prevention and

> treatment of scar.

>

> moonbeam

>

>

>Get HUGE info at http://www.cures for cancer.ws, and post your own links there.

>Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by

>visiting http://www.bobhurt.com/subunsub.mv

>

>

[Guest guest]

With your doctor's permission: I would consider cross-fiber self massage or

massage by a trained/experienced neuromuscular re-education (massage)

therapist: CMT, LMT, RMT or a nurse or someone with some medical massage

experience, preferably.

Massage breaks up scar tissue, and lactic acid buildup. It stimulates immune

function, increases respiratory and circulatory functions, as well as

relieves stress.

Cancer was once considered a contraindication for massage therapy, but not

any more. Besides, it offers the cancer patient a better " quality of life "

too.

There are lots of articles on the subject of massage and massage on cancer

patients. Check the AMTA website: American Massage Therapy Association.

The American Massage Therapy Journal has had articles recently, I believe, as

well as Bodywork Magazine, and Massage Magazine, about cancer and massage,

and you may even find old articles in those magazines, on scar tissue

massage, too.

The Touch Therapy Institute in Miami, FL is doing extensive research on the

benefits of massage. Look for their website.

Also: chiropractic treatments and electro-acupuncture may give some profound

results. Be sure to find a qualified medical massage therapist and/or a

qualified physican or preferably a Chinese medical doctor/acupuncturist for

all these therapies.

Be sure to ask and check the credentials of the M.D. or the chiropractor, to

make certain that they each have had more than 100 " elective " hours of

acupuncture back in med school! Acupuncture is a three-year curriculum,

minimum, I believe.

I have fibromyalgia and injuries from two accidents these past two years, and

I get massage, chiropractic and electro-acupuncture weekly. They all help me

make it from day-to-day, and I'm a massage therapist, too, with a very

physical medical massage practice. Good luck!

[Guest guest]

At 08:26 PM 1/22/2002 +0000, you wrote:

>Hi People

>

>I've lurked here for the last couple of weeks, before making my first

>post. I've made a couple of attempts to post, but ended up cancelling

>them due to the 'oh woe is me' nature they descended into.

>

>To put it in a nutshell, I was diagnosed with c-toma in both ears in

>the middle of last year. I've had my first operation on the left ear

>(wall up), with the 1st on the right coming up around March this

>year. My surgeon performed the reconstruction of the middle ear bones

>at the same time as the c-toma removal - perhaps not a great idea, but

>I'm sure he wouldn't have done it if he didn't think it a good idea

>(and I applied a little pressure on him myself, before I knew enough

>about the condition to be more cautious).

>

>Consequently, my hearing loss is slight (so far), and bizarrely only

>seems to make hearing low tones difficult (males voices, etc). Oh,

>and the TV can be frustrating too, mainly due to the tinnitus (sp?) that

>starts up.

>

>My gripe of the moment is the scar around my left ear. I was told to

>expect some tightening of the tissue, but not intermittent pain and

>restricted head movement. The pain's fairly brief, as if someone was

>poking something sharp into the side of my head. And I guess the

>restricted movement could be put down to the cold weather at the

>moment (I'm in the UK), as it seems to come and go (being much worse

>in the evenings).

>

>I was wondering if anyone else would care to share their experiences

>of what happened with their scar(s) as time passed. I'm also

>interested in what to expect when the 2nd operation takes place - is

>the original scar 'split', or is a new one created?

>

>Apologies if my moans pale into insignificance compared to problems

>experienced by other people who have c-toma, but this is really

>starting to get me down.

>

>Thanks for reading.

>

>--

>Pete

No questions or concerns about this condition are trivial. That's what

we're here for.

My scar " twinged " from time to time. It was also really numb in the

surrounding area. It gets better, but mine hasn't improved to full feeling

in five years.

The old scar is opened and any excess scar tissue is removed at the time of

another surgery. If there are different areas of involvement with new

c-toma, of course another incision will be made.

Good luck on your surgery in March and be sure to let us know how you are

doing.

Diane Brunet

http://www.sassysuds.com

http://www.inetworld.net/dlb2

Make a fast friend! Adopt a racing greyhound.

[Guest guest]

Hi Pete,

Welcome to the group!

My first surgery was in March of last year. My scar was really numb

at first and it twinged a lot. I also had the intermittent pain that

felt like something sharp was poking into the side of my head for

months. That was the worst! It never lasted very long – I

don't know, maybe 15-30 seconds. But, sometimes it was painful

enough to bring tears to my eyes. I personally never experienced the

restricted head movement, however I can definitely understand the

cold effecting you.

My scar is pretty much normal now, no more numbness and I can't

even remember when I last experienced the stabbing pain or any

twinges.

The second operation on my ear was in August. My doctor was able to

do it through the ear canal so I didn't have to start all over on

the scar healing. Yea! I go back on Monday for my 4-month checkup

(even though it has been 5 ½ months .. lol).

Hey, keep posting and don't worry about sounding " woe is

me " . We all understand and besides, you didn't moan or

complain too much at all!

Good luck to you,

> Hi People

>

> I've lurked here for the last couple of weeks, before making my

first

> post. I've made a couple of attempts to post, but ended up

cancelling

> them due to the 'oh woe is me' nature they descended into.

>

> To put it in a nutshell, I was diagnosed with c-toma in both ears in

> the middle of last year. I've had my first operation on the left

ear

> (wall up), with the 1st on the right coming up around March this

> year. My surgeon performed the reconstruction of the middle ear

bones

> at the same time as the c-toma removal - perhaps not a great idea,

but

> I'm sure he wouldn't have done it if he didn't think it a good idea

> (and I applied a little pressure on him myself, before I knew enough

> about the condition to be more cautious).

>

> Consequently, my hearing loss is slight (so far), and bizarrely only

> seems to make hearing low tones difficult (males voices, etc). Oh,

> and the TV can be frustrating too, mainly due to the tinnitus (sp?)

that

> starts up.

>

> My gripe of the moment is the scar around my left ear. I was told

to

> expect some tightening of the tissue, but not intermittent pain and

> restricted head movement. The pain's fairly brief, as if someone

was

> poking something sharp into the side of my head. And I guess the

> restricted movement could be put down to the cold weather at the

> moment (I'm in the UK), as it seems to come and go (being much worse

> in the evenings).

>

> I was wondering if anyone else would care to share their experiences

> of what happened with their scar(s) as time passed. I'm also

> interested in what to expect when the 2nd operation takes place - is

> the original scar 'split', or is a new one created?

>

> Apologies if my moans pale into insignificance compared to problems

> experienced by other people who have c-toma, but this is really

> starting to get me down.

>

> Thanks for reading.

>

> --

> Pete

[Guest guest]

Sassy Suds Specialty Handcrafted Soaps <Diane@...> writes:

>

> No questions or concerns about this condition are trivial. That's what

> we're here for.

Thanks :-)

> My scar " twinged " from time to time. It was also really numb in the

> surrounding area. It gets better, but mine hasn't improved to full feeling

> in five years.

I'm glad it's going to get better. My ear is also still numb, but

just the top half, along with the opening to the ear canal. The

numbness over my cheekbone improved rapidly in the first few weeks

after the surgery, although it's still very slightly numb.

I was terrified, when washing my ear and hair in the first few weeks,

that I'd open the scar. I'm now confident enough to bend the top of

the ear around while washing it :-)

> The old scar is opened and any excess scar tissue is removed at the time of

> another surgery. If there are different areas of involvement with new

> c-toma, of course another incision will be made.

Hmmm. My hair line only covers the top part of the scar - did you

find the scar more prominent after the second surgery, or the same?

> Good luck on your surgery in March and be sure to let us know how you are

> doing.

Thanks - I will.

--

Pete

[Guest guest]

" melissa2541 " <melissa2541@...> writes:

> Hi Pete,

>

> Welcome to the group!

Thanks :-)

> My first surgery was in March of last year. My scar was really numb

> at first and it twinged a lot. I also had the intermittent pain that

> felt like something sharp was poking into the side of my head for

> months. That was the worst! It never lasted very long – I

> don't know, maybe 15-30 seconds. But, sometimes it was painful

> enough to bring tears to my eyes. I personally never experienced the

> restricted head movement, however I can definitely understand the

> cold effecting you.

I know what you mean with regard to the pain. Sometimes the pain is

in the ear, other times above the scar on the side of my head. I

understand there's a second, small, scar where the camera goes in.

That might be the cause of the pain on the side of my head.

The other thing I noticed the other night was a ticking sound in my

ear. It almost felt and sounded like there was some activity going on

in there. Pretty weird, but it only happened that one night.

> My scar is pretty much normal now, no more numbness and I can't

> even remember when I last experienced the stabbing pain or any

> twinges.

:-)

> The second operation on my ear was in August. My doctor was able to

> do it through the ear canal so I didn't have to start all over on

> the scar healing. Yea! I go back on Monday for my 4-month checkup

> (even though it has been 5 ½ months .. lol).

Did you have the wall down op then? I've read differing opinions on

letting water into the ear canal after wall down surgery. Some say

don't do it, others that you may experience some nausea or dizziness

if the water is cold.

I hope everything works out for you on Monday.

> Hey, keep posting and don't worry about sounding " woe is

> me " . We all understand and besides, you didn't moan or

> complain too much at all!

I will :-) Finding a group of people on the net who /really/

understand is a godsend. I just wish I'd come across the group last

summer when I was worrying myself silly!

--

Pete

pete@...

-------------------------------------------------------------

MaVerick - Open Source MultiValue Database Management System

Check out the website -> http://www.maverick-dbms.org

[Guest guest]

Does anything work to keep the water out?, Todd

Re: Re: Scar tissue

"melissa2541" <melissa2541@...> writes:> Hi Pete,> > Welcome to the group!Thanks :-)> My first surgery was in March of last year. My scar was really numb > at first and it twinged a lot. I also had the intermittent pain that > felt like something sharp was poking into the side of my head for > months. That was the worst! It never lasted very long – I> don't know, maybe 15-30 seconds. But, sometimes it was painful > enough to bring tears to my eyes. I personally never experienced the > restricted head movement, however I can definitely understand the > cold effecting you.I know what you mean with regard to the pain. Sometimes the pain isin the ear, other times above the scar on the side of my head. Iunderstand there's a second, small, scar where the camera goes in.That might be the cause of the pain on the side of my head.The other thing I noticed the other night was a ticking sound in myear. It almost felt and sounded like there was some activity going onin there. Pretty weird, but it only happened that one night.> My scar is pretty much normal now, no more numbness and I can't> even remember when I last experienced the stabbing pain or any > twinges.:-)> The second operation on my ear was in August. My doctor was able to > do it through the ear canal so I didn't have to start all over on> the scar healing. Yea! I go back on Monday for my 4-month checkup > (even though it has been 5 ½ months .. lol).Did you have the wall down op then? I've read differing opinions onletting water into the ear canal after wall down surgery. Some saydon't do it, others that you may experience some nausea or dizzinessif the water is cold.I hope everything works out for you on Monday.> Hey, keep posting and don't worry about sounding "woe is> me". We all understand and besides, you didn't moan or> complain too much at all!I will :-) Finding a group of people on the net who /really/understand is a godsend. I just wish I'd come across the group lastsummer when I was worrying myself silly!-- Petepete@...-------------------------------------------------------------MaVerick - Open Source MultiValue Database Management SystemCheck out the website -> http://www.maverick-dbms.org

[Guest guest]

At 08:30 PM 1/23/2002 +0000, you wrote:

>Hmmm. My hair line only covers the top part of the scar - did you

>find the scar more prominent after the second surgery, or the same?

No, the scar isn't any more prominent, but the dent in my skull bone along

the scar line is a lot deeper. It's behind my ear and under my hair, so I

normally don't notice it much. My second surgery was less painful postop

than the first, so go figure...

Diane

[Guest guest]

At 08:38 PM 1/23/2002 +0000, you wrote:

>Finding a group of people on the net who /really/

>understand is a godsend. I just wish I'd come across the group last

>summer when I was worrying myself silly!

I wish I had this group when I was first diagnosed back in 97. Does anyone

else think that cholesteatoma isn't really all that rare, just that it's

under diagnosed? Just a thought.

Diane

[Guest guest]

Hi Diane

Yes I think it is underdiagnosed and also no big stars have had it . If some actor or sports figure would develop it, everyone would hear about it. I bet there would be more money raised for more research on better prevention and possibly a cure.

Angie

>From: Sassy Suds Specialty Handcrafted Soaps

>Reply-cholesteatoma >cholesteatoma >Subject: Re: Re: Scar tissue >Date: Wed, 23 Jan 2002 17:03:36 -0800 > >At 08:38 PM 1/23/2002 +0000, you wrote: > >Finding a group of people on the net who /really/ > >understand is a godsend. I just wish I'd come across the group last > >summer when I was worrying myself silly! > >I wish I had this group when I was first diagnosed back in 97. Does anyone >else think that cholesteatoma isn't really all that rare, just that it's >under diagnosed? Just a thought. > >Diane > Send and receive Hotmail on your mobile device: Click Here

[Guest guest]

So what causes this sporadic pain in the ear and the drainage?

Re: Re: Scar tissue

"melissa2541" <melissa2541@...> writes:> Hi Pete,> > Welcome to the group!Thanks :-)> My first surgery was in March of last year. My scar was really numb > at first and it twinged a lot. I also had the intermittent pain that > felt like something sharp was poking into the side of my head for > months. That was the worst! It never lasted very long – I> don't know, maybe 15-30 seconds. But, sometimes it was painful > enough to bring tears to my eyes. I personally never experienced the > restricted head movement, however I can definitely understand the > cold effecting you.I know what you mean with regard to the pain. Sometimes the pain isin the ear, other times above the scar on the side of my head. Iunderstand there's a second, small, scar where the camera goes in.That might be the cause of the pain on the side of my head.The other thing I noticed the other night was a ticking sound in myear. It almost felt and sounded like there was some activity going onin there. Pretty weird, but it only happened that one night.> My scar is pretty much normal now, no more numbness and I can't> even remember when I last experienced the stabbing pain or any > twinges.:-)> The second operation on my ear was in August. My doctor was able to > do it through the ear canal so I didn't have to start all over on> the scar healing. Yea! I go back on Monday for my 4-month checkup > (even though it has been 5 ½ months .. lol).Did you have the wall down op then? I've read differing opinions onletting water into the ear canal after wall down surgery. Some saydon't do it, others that you may experience some nausea or dizzinessif the water is cold.I hope everything works out for you on Monday.> Hey, keep posting and don't worry about sounding "woe is> me". We all understand and besides, you didn't moan or> complain too much at all!I will :-) Finding a group of people on the net who /really/understand is a godsend. I just wish I'd come across the group lastsummer when I was worrying myself silly!-- Petepete@...-------------------------------------------------------------MaVerick - Open Source MultiValue Database Management SystemCheck out the website -> http://www.maverick-dbms.org

[Guest guest]

> Did you have the wall down op then? I've read differing opinions on

> letting water into the ear canal after wall down surgery. Some say

> don't do it, others that you may experience some nausea or dizziness

> if the water is cold.

No, it wasn't wall down. I lost part of my mastoid bone and my

hearing bones, but my doctor was able to get all the c-toma without

having to do wall down.

> I hope everything works out for you on Monday.

Thanks

[Guest guest]

Sassy Suds Specialty Handcrafted Soaps <Diane@...> writes:

> At 08:38 PM 1/23/2002 +0000, you wrote:

> >Finding a group of people on the net who /really/

> >understand is a godsend. I just wish I'd come across the group last

> >summer when I was worrying myself silly!

>

> I wish I had this group when I was first diagnosed back in 97. Does anyone

> else think that cholesteatoma isn't really all that rare, just that it's

> under diagnosed? Just a thought.

When I was looking for info on the net before my first op. I came

across a set of pages for a conference on c-toma. It appeared that

there had been 5 of these conferences. The page detailed one a few

years ago (I think). There were various papers available from the web

site. I read one written by a surgeon at the Kobe General Hospital in

Japan. He wrote that over 10 years he'd performed 500 operations. 50

a year for a large city and surrounding area isn't that huge I guess.

I'll have look for the url tonight.

There's a possibility that I've had this condition since I was 15 (I'm

now 31). Various doctors over the years had treated the infections,

with one coming close to diagnosing it when he observed that I

appeared to have eczema in my ear canal, but either didn't know about

c-toma, or didn't make the link.

I guess I've just been lucky that the middle ear bones weren't totally

destroyed, or my inner ear invaded. My mastoid was riddled on the

left side - again, I'm lucky it hadn't actually broken through.

--

Pete

[Guest guest]

Hi, Diane. Cholesteatoma is not as rare as I originally thought (thanks to

's website and this group) and it goes undiagnosed more times than is

necessary. That's why c-toma needs to get out to the general public, and

the sooner it does, the better. I am writing a letter to Oprah and several

magazines, sharing my son's case, as well as information about the disease.

Just when I thought the letter was finished, my husband comes up with some

important additions. I was hoping to have it finished this week, but I've

been busy planning his 40th! My goal is to have it completed this month!

I'll keep you posted.

Terri

Re: Re: Scar tissue

At 08:38 PM 1/23/2002 +0000, you wrote:

>Finding a group of people on the net who /really/

>understand is a godsend. I just wish I'd come across the group last

>summer when I was worrying myself silly!

I wish I had this group when I was first diagnosed back in 97. Does anyone

else think that cholesteatoma isn't really all that rare, just that it's

under diagnosed? Just a thought.

Diane

[Guest guest]

Angie, you hit the nail on the head. Good point!

Re: Re: Scar tissue >Date: Wed, 23 Jan 2002 17:03:36 -0800 > >At 08:38 PM 1/23/2002 +0000, you wrote: > >Finding a group of people on the net who /really/ > >understand is a godsend. I just wish I'd come across the group last > >summer when I was worrying myself silly! > >I wish I had this group when I was first diagnosed back in 97. Does anyone >else think that cholesteatoma isn't really all that rare, just that it's >under diagnosed? Just a thought. > >Diane >

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[Guest guest]

Sassy Suds Specialty Handcrafted Soaps <Diane@...> writes:

> At 08:30 PM 1/23/2002 +0000, you wrote:

>

> >Hmmm. My hair line only covers the top part of the scar - did you

> >find the scar more prominent after the second surgery, or the same?

>

> No, the scar isn't any more prominent, but the dent in my skull bone along

> the scar line is a lot deeper. It's behind my ear and under my hair, so I

> normally don't notice it much. My second surgery was less painful postop

> than the first, so go figure...

I hope the 2nd surgery is less painful than the first. The packing in

my ear canal was wedged in too tight, so I was in excruciating pain

for about a week afterwards, until I saw the surgeon again and he

replaced the packing.

That's actually some advice I'd give someone going for their first op

- if you're experiencing pain after the first couple of days, go back

and see your surgeon/consultant, as it shouldn't be painful.

--

Pete

pete@...

-------------------------------------------------------------

MaVerick - Open Source MultiValue Database Management System

Check out the website -> http://www.maverick-dbms.org

[Guest guest]

" Todd Allman " <tallman@...> writes:

> Does anything work to keep the water out?, Todd

I've bought an Ear Band-it for when I go swimming or boating. I've

not used it in anger yet, so can't say how good they are, but my

consultant recommended it.

HTH

--

Pete

[Guest guest]

Hi Diane,

I think you're absolutely right about it not being as rare as we

probably all thought when ourselves or a family member were first

diagnosed.

I'm glad you posted what you did, because it gives me an opportunity

for ask for your help and the help of others in the group. Since my

son was diagnosed, and I joined this group, I have seen that there

are many people that are in the same situation that I was in when I

found out about it. Frustrated, unable to find a lot of information,

and angry at the medical community (not all physicians) for not being

able to make a diagnosis earlier.

After talking to a few people, including my son's

Otologist/Neurotologist I decided to start an organization which

would promote awareness of cholesteatoma, advocate for people with

cholesteatoma, provide a database of qualified surgeons, and

eventually get to the point where all of the medical community will

think about being a little more aggressive in testing for this when

they see children and adults coming into their office over and over

again for ear infections.

I am trying to gather as much information as possible to put together

a proposal to obtain funding to get this organization off the ground -

- I will need enough at least to get it incorporated, and obtaining a

non-profit status - once those things are out of the way I will be

able to conduct fund-raisers and/or write grants to fund the work I

plan to do with the organization.

I would like everyone's input - What information was lacking most

about this when you or your family member were diagnosed? Did your

doctor diagnose you early on, or did the diagnosis come after there

was already extensive damage? What information or service could this

organization provide that would be helpful to people with

cholesteatoma or family members? And, please, if there is anything

else you can think of let me know -- tell me your story! Also, if

anyone out there has run across any statistics, such as % of

population diagnosed with this, or what % are children, or anything

other statistics, please let me know. You can email me at

lmazzarell@....

Also, someone mentioned the fact that people may not have heard much

about it because there isn't a celebrity that has had it. That's

something I plan to try to check into (not sure how yet). I run two

celebrity fund-raisers for the organization I currently work for, so

I may be able to start with some people I know already, and work from

there.

Thanks! Look forward to hearing from you!

Mazzarell

> >Finding a group of people on the net who /really/

> >understand is a godsend. I just wish I'd come across the group

last

> >summer when I was worrying myself silly!

>

> I wish I had this group when I was first diagnosed back in 97.

Does anyone

> else think that cholesteatoma isn't really all that rare, just that

it's

> under diagnosed? Just a thought.

>

> Diane

[Guest guest]

Hi diane

you can get a lot of information on this disease

CHOLESTEATOMA at http://www.chole2000.org/

Warm Regards

Dilip

Bombay,India

__________________________________________________

[Guest guest]

" lmazzarell " <lmazzarell@...> writes:

> After talking to a few people, including my son's

> Otologist/Neurotologist I decided to start an organization which

> would promote awareness of cholesteatoma, advocate for people with

> cholesteatoma, provide a database of qualified surgeons, and

> eventually get to the point where all of the medical community will

> think about being a little more aggressive in testing for this when

> they see children and adults coming into their office over and over

> again for ear infections.

I think this could be a good idea. Would you envisage it being an

international organisation?

Although there are various pages on the net which provide varying

degrees of medical detail about the condition, I was unable to find

anything written by a fellow sufferer for others with the condition,

until I found this group.

On a slightly related note; I've seen various references to 's

website, which I believe is <http://www.cholesteatoma.org>, however I

get a DNS error when trying to access it. Do I have the right URL, or

is it only up at certain times of the day?

--

Pete

[Guest guest]

To answer the first question, yes, I do envision it to become

international. I've seen quite a few people from Europe and Canada

write in to this group. I'll start close to home, with the United

States, but would like to be able to expand the database of doctors,

etc. to other countries if possible.

As far as the other web site, you do have the right URL, I would try

it again.

> " lmazzarell " <lmazzarell@y...> writes:

>

> > After talking to a few people, including my son's

> > Otologist/Neurotologist I decided to start an organization which

> > would promote awareness of cholesteatoma, advocate for people

with

> > cholesteatoma, provide a database of qualified surgeons, and

> > eventually get to the point where all of the medical community

will

> > think about being a little more aggressive in testing for this

when

> > they see children and adults coming into their office over and

over

> > again for ear infections.

>

> I think this could be a good idea. Would you envisage it being an

> international organisation?

>

> Although there are various pages on the net which provide varying

> degrees of medical detail about the condition, I was unable to find

> anything written by a fellow sufferer for others with the condition,

> until I found this group.

>

> On a slightly related note; I've seen various references to 's

> website, which I believe is <http://www.cholesteatoma.org>, however

I

> get a DNS error when trying to access it. Do I have the right URL,

or

> is it only up at certain times of the day?

>

> --

> Pete