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Hi ,

Michele here. I will tell you a little of my husbands experience

with the cleanings.

Ideally, his doctor would like him to come in once a month for

cleanings, which at this time, or at least until the end of July,

has been working. AT the end of July we lose our health coverage

provided by the State of Oregon because we make too much money. At

that time, my husband will only go in twice a year, because that is

all we can afford. It scares the crap out of me since c-toma

developed in his right ear in less than 6 weeks. He is going in

today for his last cleaning covered by insurance.

Since we still owe for the first surgery in 1999, the doctors

bookkeeper will only allow us to see him if we have insurance, or if

we have the money to cover the appointment. Even emergencies, she

will not allow us to see the doc unless we have money so we end up

going to the emergency room. What really ticks me off is when we

get to the ER, they call his doc and he comes over. So what it

amounts to, is we get to see the doc at about triple the price but

since the hospital can't refuse treatment for any reason, we don't

have to worry about the money, they just bill us and we put it in

the medical stack.

I just don't get it. Dr. Todd says patient care above all else,

bookkeeper is money above all else. Go figure. It just adds more

stress in my life when I don't have any room for it.

I guess I got carried away from the cleanings to a little bitching,

but I feel a little better.

I too am looking forward to a response from Phil.

Hope this helped a little even though I go off the subject.

Michele

> Hi Phil!

>

> You indicated in one of your previous e-mails that you have your

ear

> cleaned out once a month. Is this your desire or your doctors?

Since

> your radical, has your c-toma recurred?

>

> I was just wondering why so aggressive? I'm about two months post

> surgery and already at six weeks. After my radical last year, I

went

> about every six weeks for about four months and then didn't go

again

> for four months. It was during this four month period that the c-

toma

> came back.

>

> Thanks for the help. Hope all is well.

>

> -

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Hi and Michele

This monthly cleaning is just opportunism on the part of the doctors: they really want me to attend so frequently so the can monitor this hole in the bottom of the ear (I've mentioned that one before too). This seems to be an untypical feature and a bit too extensive to try another graft after the failure of the first. I think this was a by-product of a canal cholesteatoma which had been present alongside the more familiar (attic) kind. I'm not aware that any fully formed c-toma has recurred but they're obviously finding bits of skin and othe rubbish to clean out. It had been over six months after surgery that they told me the ear was beginning to heal. I'm not experiencing any major ear trouble at the moment (just those mild throbs and twangs that everybody seems to get) so if all goes well I should soon only have to turn up every three or four months.

Thanks for the interest

Regards

Phil

Question for Phil

Hi Phil!You indicated in one of your previous e-mails that you have your earcleaned out once a month. Is this your desire or your doctors? Sinceyour radical, has your c-toma recurred? I was just wondering why so aggressive? I'm about two months postsurgery and already at six weeks. After my radical last year, I wentabout every six weeks for about four months and then didn't go againfor four months. It was during this four month period that the c-tomacame back.Thanks for the help. Hope all is well.-

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  • 7 years later...

I started my problems 5 years ago - and I wanted to get an idea if you think

they might be related. 5 years ago I had sort of an acute attack of everything -

it came on within 2 weeks, I was a caretaker/major domo, for a wheel-chair bound

man and his wife for 9 years at the time, and my hands and arms were getting

neuro pain (falling asleep) - very difficult to get to sleep when the arms would

ache and fall asleep before I did. I thought it might be a result of strain to

the rotator cuff of my right arm, which is still in trouble. I went to an

orthopedist who shot some cortisone into the shoulder, but I got no results. 2

weeks later I couldn't walk and was in extraordinary pain, I managed to make it

to the hospital - and underwent a battery of tests - was there for 7 days - I

think they released me without a true diagnosis, because of the length of my

stay. I was sent home with a Rheumatoid Arthritis diagnosis, I did have an RA

factor in my work up, but now I've since learned that several people have an

elevated RA factor, without symptoms. I assumed that the diagnosis was correct

however and went to a rheumatologist who placed me on prednisone and

methotrexate - also would try different meds to alleviate the pain that was

becoming constant and unresponsive to meds. I went to 2 different rheums. and

was treated with low dose prednisone and methotrexate but to no avail. In 2007

when I was 60, I was diagnosed with prostate cancer - treated with external

radiation and 1 year later with progressively worse chronic pain - that left me

isolated and home-bound, I had atrophied testicles treated with 1% Testim - but

only for a month when my insurance ran out. September of this year I received

Medicare because of disability. Now for a month I saw a new rheumatologist who

put me on Enbrel - self injections 2 x's p.wk - a wonder-drug that has finally

alleviated the pain, and I've just started an exercise/swim routine at a gym,

hopefully I can knock down some of the 45 lb. weight-gain from the last few

years - I don't know about my boobs though - I joked saying I needed a bra -

but-----

That's my history - had an eye exam 2 days ago and the md thinks I have the

onset of glaucoma - still have more test for that.

My question is: can all of this be related? RA is an auto-immune disease -

hypo-g is frequently associated with HIV - Glaucoma-like symptoms may be due to

a pituitary growth - yet to be determined.

You've been very helpful already - I wondered if Dr. Crisler knows of mds in

NYC who use his methodology - or if I should wait and see what my urologist says

on Friday. The more I learn about this stuff the more anxious I get - since the

ED was bad to begin with - the prostate cancer took 2 " of dick length - now the

balls are all but gone - I can't recognize myself south of the border. I'm

single and thought there still might be time to hook up - but I've got to adjust

to the genital " deformity " first! sorry I'm explicit and long winded! lee

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If I were you I would check my cortisol levels being that your were on

prednisone this can shut down your Adrenals from making enough Cortisol it's

called Adrenal Fatigure. Also have your Testosterone levels checked low levels

can cause joint and muscle pain. Yes see that Uro what have you got to lose

maybe he will look into your testosteorne levels.

The labs you would need are at Dr. 's site www.allthingsmale.com read TRT: A

Recipe for Success the labs are in this and why.

Co-Moderator

Phil

> From: semirade <no_reply >

> Subject: question for Phil

>

> Date: Saturday, December 5, 2009, 2:12 PM

> I started my problems 5 years ago -

> and I wanted to get an idea if you think they might be

> related. 5 years ago I had sort of an acute attack of

> everything - it came on within 2 weeks, I was a

> caretaker/major domo, for a wheel-chair bound man and his

> wife for 9 years at the time, and my hands and arms were

> getting neuro pain (falling asleep) - very difficult to get

> to sleep when the arms would ache and fall asleep before I

> did. I thought it might be a result of strain to the rotator

> cuff of my right arm, which is still in trouble. I went to

> an orthopedist who shot some cortisone into the shoulder,

> but I got no results. 2 weeks later I couldn't walk and was

> in extraordinary pain, I managed to make it to the hospital

> - and underwent a battery of tests - was there for 7 days -

> I think they released me without a true diagnosis, because

> of the length of my stay. I was sent home with a Rheumatoid

> Arthritis diagnosis, I did have an RA factor in my work up,

> but now I've since learned that several people have an

> elevated RA factor, without symptoms. I assumed that the

> diagnosis was correct however and went to a rheumatologist

> who placed me on prednisone and methotrexate - also would

> try different meds to alleviate the pain that was becoming

> constant and unresponsive to meds. I went to 2 different

> rheums. and was treated with low dose prednisone and

> methotrexate but to no avail. In 2007 when I was 60, I was

> diagnosed with prostate cancer - treated with external

> radiation and 1 year later with progressively worse chronic

> pain - that left me isolated and home-bound, I had atrophied

> testicles treated with 1% Testim - but only for a month when

> my insurance ran out. September of this year I received

> Medicare because of disability. Now for a month I saw a new

> rheumatologist who put me on Enbrel - self injections 2 x's

> p.wk - a wonder-drug that has finally alleviated the pain,

> and I've just started an exercise/swim routine at a gym,

> hopefully I can knock down some of the 45 lb. weight-gain

> from the last few years - I don't know about my boobs though

> - I joked saying I needed a bra - but-----

>

> That's my history - had an eye exam 2 days ago and the md

> thinks I have the onset of glaucoma - still have more test

> for that.

>

> My question is: can all of this be related? RA is an

> auto-immune disease - hypo-g is frequently associated with

> HIV - Glaucoma-like symptoms may be due to a pituitary

> growth - yet to be determined.

>

> You've been very helpful already - I wondered if Dr.

> Crisler knows of mds in NYC who use his methodology - or if

> I should wait and see what my urologist says on Friday. The

> more I learn about this stuff the more anxious I get - since

> the ED was bad to begin with - the prostate cancer took 2 "

> of dick length - now the balls are all but gone - I can't

> recognize myself south of the border. I'm single and thought

> there still might be time to hook up - but I've got to

> adjust to the genital " deformity " first! sorry I'm explicit

> and long winded! lee

>

>

>

> ------------------------------------

>

>

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Great! Thanks Phil - I'm feeling very armed now, and I did write down the panels

suggested in allthingsmale didn't think of the cortisol - it is mentioned, but

it's something I can pay particular attn. to. Also perhaps the uro will think

I've studied up a bit, which thanks to you won't be that far amiss! Thanks

again! lee

>

> > From: semirade <no_reply >

> > Subject: question for Phil

> >

> > Date: Saturday, December 5, 2009, 2:12 PM

> > I started my problems 5 years ago -

> > and I wanted to get an idea if you think they might be

> > related. 5 years ago I had sort of an acute attack of

> > everything - it came on within 2 weeks, I was a

> > caretaker/major domo, for a wheel-chair bound man and his

> > wife for 9 years at the time, and my hands and arms were

> > getting neuro pain (falling asleep) - very difficult to get

> > to sleep when the arms would ache and fall asleep before I

> > did. I thought it might be a result of strain to the rotator

> > cuff of my right arm, which is still in trouble. I went to

> > an orthopedist who shot some cortisone into the shoulder,

> > but I got no results. 2 weeks later I couldn't walk and was

> > in extraordinary pain, I managed to make it to the hospital

> > - and underwent a battery of tests - was there for 7 days -

> > I think they released me without a true diagnosis, because

> > of the length of my stay. I was sent home with a Rheumatoid

> > Arthritis diagnosis, I did have an RA factor in my work up,

> > but now I've since learned that several people have an

> > elevated RA factor, without symptoms. I assumed that the

> > diagnosis was correct however and went to a rheumatologist

> > who placed me on prednisone and methotrexate - also would

> > try different meds to alleviate the pain that was becoming

> > constant and unresponsive to meds. I went to 2 different

> > rheums. and was treated with low dose prednisone and

> > methotrexate but to no avail. In 2007 when I was 60, I was

> > diagnosed with prostate cancer - treated with external

> > radiation and 1 year later with progressively worse chronic

> > pain - that left me isolated and home-bound, I had atrophied

> > testicles treated with 1% Testim - but only for a month when

> > my insurance ran out. September of this year I received

> > Medicare because of disability. Now for a month I saw a new

> > rheumatologist who put me on Enbrel - self injections 2 x's

> > p.wk - a wonder-drug that has finally alleviated the pain,

> > and I've just started an exercise/swim routine at a gym,

> > hopefully I can knock down some of the 45 lb. weight-gain

> > from the last few years - I don't know about my boobs though

> > - I joked saying I needed a bra - but-----

> >

> > That's my history - had an eye exam 2 days ago and the md

> > thinks I have the onset of glaucoma - still have more test

> > for that.

> >

> > My question is: can all of this be related? RA is an

> > auto-immune disease - hypo-g is frequently associated with

> > HIV - Glaucoma-like symptoms may be due to a pituitary

> > growth - yet to be determined.

> >

> > You've been very helpful already - I wondered if Dr.

> > Crisler knows of mds in NYC who use his methodology - or if

> > I should wait and see what my urologist says on Friday. The

> > more I learn about this stuff the more anxious I get - since

> > the ED was bad to begin with - the prostate cancer took 2 "

> > of dick length - now the balls are all but gone - I can't

> > recognize myself south of the border. I'm single and thought

> > there still might be time to hook up - but I've got to

> > adjust to the genital " deformity " first! sorry I'm explicit

> > and long winded! lee

> >

> >

> >

> > ------------------------------------

> >

> >

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Your welcome Lee I pry all works out well for you let us know how it goes.

Co-Moderator

Phil

> From: semirade <no_reply >

> Subject: Re: question for Phil

>

> Date: Saturday, December 5, 2009, 8:15 PM

> Great! Thanks Phil - I'm feeling very

> armed now, and I did write down the panels suggested in

> allthingsmale didn't think of the cortisol - it is

> mentioned, but it's something I can pay particular attn. to.

> Also perhaps the uro will think I've studied up a bit, which

> thanks to you won't be that far amiss! Thanks again! lee

>

>

> >

> > > From: semirade <no_reply >

> > > Subject: question for Phil

> > >

> > > Date: Saturday, December 5, 2009, 2:12 PM

> > > I started my problems 5 years ago -

> > > and I wanted to get an idea if you think they

> might be

> > > related. 5 years ago I had sort of an acute

> attack of

> > > everything - it came on within 2 weeks, I was a

> > > caretaker/major domo, for a wheel-chair bound man

> and his

> > > wife for 9 years at the time, and my hands and

> arms were

> > > getting neuro pain (falling asleep) - very

> difficult to get

> > > to sleep when the arms would ache and fall asleep

> before I

> > > did. I thought it might be a result of strain to

> the rotator

> > > cuff of my right arm, which is still in trouble.

> I went to

> > > an orthopedist who shot some cortisone into the

> shoulder,

> > > but I got no results. 2 weeks later I couldn't

> walk and was

> > > in extraordinary pain, I managed to make it to

> the hospital

> > > - and underwent a battery of tests - was there

> for 7 days -

> > > I think they released me without a true

> diagnosis, because

> > > of the length of my stay. I was sent home with a

> Rheumatoid

> > > Arthritis diagnosis, I did have an RA factor in

> my work up,

> > > but now I've since learned that several people

> have an

> > > elevated RA factor, without symptoms. I assumed

> that the

> > > diagnosis was correct however and went to a

> rheumatologist

> > > who placed me on prednisone and methotrexate -

> also would

> > > try different meds to alleviate the pain that was

> becoming

> > > constant and unresponsive to meds. I went to 2

> different

> > > rheums. and was treated with low dose prednisone

> and

> > > methotrexate but to no avail. In 2007 when I was

> 60, I was

> > > diagnosed with prostate cancer - treated with

> external

> > > radiation and 1 year later with progressively

> worse chronic

> > > pain - that left me isolated and home-bound, I

> had atrophied

> > > testicles treated with 1% Testim - but only for a

> month when

> > > my insurance ran out. September of this year I

> received

> > > Medicare because of disability. Now for a month I

> saw a new

> > > rheumatologist who put me on Enbrel - self

> injections 2 x's

> > > p.wk - a wonder-drug that has finally alleviated

> the pain,

> > > and I've just started an exercise/swim routine at

> a gym,

> > > hopefully I can knock down some of the 45 lb.

> weight-gain

> > > from the last few years - I don't know about my

> boobs though

> > > - I joked saying I needed a bra - but-----

> > >

> > > That's my history - had an eye exam 2 days ago

> and the md

> > > thinks I have the onset of glaucoma - still have

> more test

> > > for that.

> > >

> > > My question is: can all of this be related? RA is

> an

> > > auto-immune disease - hypo-g is frequently

> associated with

> > > HIV - Glaucoma-like symptoms may be due to a

> pituitary

> > > growth - yet to be determined.

> > >

> > > You've been very helpful already - I wondered if

> Dr.

> > > Crisler knows of mds in NYC who use his

> methodology - or if

> > > I should wait and see what my urologist says on

> Friday. The

> > > more I learn about this stuff the more anxious I

> get - since

> > > the ED was bad to begin with - the prostate

> cancer took 2 "

> > > of dick length - now the balls are all but gone -

> I can't

> > > recognize myself south of the border. I'm single

> and thought

> > > there still might be time to hook up - but I've

> got to

> > > adjust to the genital " deformity " first! sorry

> I'm explicit

> > > and long winded! lee

> > >

> > >

> > >

> > > ------------------------------------

> > >

> > >

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