Latest news

[Guest guest]

Moria,

You look wonderful, can't believe your going to be away for 2 years.

Please keep us posted with updates! Most patients that have had

plastic surgery after feel as if they have had a new MGB, in that they

eat even less due to the tummy tuck! So don't be surprised if you drop

a few more pounds.

You were such an inspiration to the patients & families last week

when you stopped by the hospital.

Best of luck on your new assignment.

Kathy Goodman

klg@...

Patient Representative

CLOS

Office phone 704-871-0031

Cell 704-682-1723

Latest News

Hi Everyone on the Post Op Site!

Well, A lot of things have happened inthe 21 months since my MGB and I

believe it was worth every penny I took out of my 401K plan to have it.

I've lost 180 pounds total and I weigh 180 pounds! That's half! FROM A

SIZE 32.5 TO 14 PETITE BOTTOMS AND LARGE TOP. During Ocotober I had my

legs, arms, chin, tummy and breast lift done with Dr. Don in Statesville

and

I couldn't be more pleased and satified. WOW! what a job he did, better

than

we both expected the out come to be. So if anyone is thinking of PS, at

least talk with DR Don, ewspecially since he'll be at the CHristmas

party.

Now my sad news......I'm going to be missing the next two years of

Christmas

Parties and picnics! I'm leaving this weekend for a new job assignment

(yes

for two years) to Geneva, Switzerland! Wow, I'm excited, happy, but

stressed. This all ouurred during my recovery time from PS so packing a

house for storage, finding renters, finding temporary arrangements for

my

two cats, VISAs, work permits, and oh, getting a new passport because

the

State Department said I didn't look like my picture just put more stress

on

me when I should have focused on recovery.

I look forward to keeping up with the pre and post websites and can't

wait

to see all th pictures from all the activities and maybe I'll find a way

to

post pictures of me through Europe as I take weekend trips once a month

throughout Europe.

For those inthe DC Washington Support Group, I'll be home during the

holidays so maybe we can arrange a meeting some evening.

I wish everyone the happiest of Thanksgivings and Holiday times and

party up

for me.

Moira

2/28/01 360/180 DR R

_________________________________________________________________

Add photos to your e-mail with MSN 8. Get 2 months FREE*.

http://join.msn.com/?page=features/featuredemail

[Guest guest]

Hi le,

Glad you finally got some answers. I believe the procedure you are referring to is TORP, Total Ossicular Reconstruction Procedure. Not sure if that is right but it seems like I have seen TORP referred to in this way on other email.

Good luck to you and keep us posted.

Michele, Group Moderator Bondurant <sbondurant@...> wrote:

Hi, everyone, I have shared some of my frustrations with my doctor being so noncommunicative on this site, so I wanted to update you about the visit I hadtoday. I made an appointment to have my almost 20 questions answered and itseems to boil down to this -Although my c-toma went to the oval and round windows,only the incus andpart of the malleus were harmed. When he does his second look surgery in acouple of weeks,if there is little or now c-toma growth, he will put in atitanium PORP [the o and r are ossicle (sp?) reconstruction, I don't recallwhat the p's stand for] to replace the incus. If there is extensive c-tomagrowth, he will do a CWD and be done with it. He said that in children andthose under 40, he would might not do that, but at my age (at 57, I think Imay be the oldest person in this group!), there was no

point in messingaround.I feel so much better having a clearer picture. He is a good surgeon, butreally doesn't volunteer much information. I am hoping for reconstruction,but I know that may not work. I've saved all the emails related to hearingaids, but will probably have more questions about those down the road.This is just such a long, rough road, that I wanted to share my good momentof feeling like I know what's up with you all. Thanks for being there.le

[Guest guest]

le,

I think the P is for Prosthetic. My Doc was going to use a procedure in which he uses my own cartlidge to connect the stapes to the eardrum. He gave me a paper on it which compared this method to PORP and it had a significantly higher success rate. I could fax it to you if you would like. email me direct with a fax number. I'll take a look at the paper this evening to verify.

Jeff Schwartzkopf

From: Michele [mailto:iambored97601@...] Sent: Wednesday, December 08, 2004 4:52 PMcholesteatoma Subject: Re: Latest news

Hi le,

Glad you finally got some answers. I believe the procedure you are referring to is TORP, Total Ossicular Reconstruction Procedure. Not sure if that is right but it seems like I have seen TORP referred to in this way on other email.

Good luck to you and keep us posted.

Michele, Group Moderator Bondurant <sbondurant@...> wrote:

Hi, everyone, I have shared some of my frustrations with my doctor being so noncommunicative on this site, so I wanted to update you about the visit I hadtoday. I made an appointment to have my almost 20 questions answered and itseems to boil down to this -Although my c-toma went to the oval and round windows,only the incus andpart of the malleus were harmed. When he does his second look surgery in acouple of weeks,if there is little or now c-toma growth, he will put in atitanium PORP [the o and r are ossicle (sp?) reconstruction, I don't recallwhat the p's stand for] to replace the incus. If there is extensive c-tomagrowth, he will do a CWD and be done with it. He said that in children andthose under 40, he would might not do that, but at my age (at 57, I think Imay be the oldest person in this group!), there was no point in messingaround.I feel so much better having a clearer picture. He is a good surgeon, butreally doesn't volunteer much information. I am hoping for reconstruction,but I know that may not work. I've saved all the emails related to hearingaids, but will probably have more questions about those down the road.This is just such a long, rough road, that I wanted to share my good momentof feeling like I know what's up with you all. Thanks for being there.le

[Guest guest]

Hi

Just to confirm and slightly amend what's already been said:

PORP = Partial Ossicular Replacement Prosthesis and

TORP = Total Ossicular Replacement Prosthesis

Phil

Glad you finally got some answers. I believe the procedure you are referring to is TORP, Total Ossicular Reconstruction Procedure. Not sure if that is right but it seems like I have seen TORP referred to in this way on other email.

Good luck to you and keep us posted.

Michele, Group Moderator Bondurant <sbondurant@...> wrote:

Hi, everyone, I have shared some of my frustrations with my doctor being so noncommunicative on this site, so I wanted to update you about the visit I hadtoday. I made an appointment to have my almost 20 questions answered and itseems to boil down to this -Although my c-toma went to the oval and round windows,only the incus andpart of the malleus were harmed. When he does his second look surgery in acouple of weeks,if there is little or now c-toma growth, he will put in atitanium PORP [the o and r are ossicle (sp?) reconstruction, I don't recallwhat the p's stand for] to replace the incus. If there is extensive c-tomagrowth, he will do a CWD and be done with it. He said that in children andthose under 40, he would might not do that, but at my age (at 57, I think Imay be the oldest person in this group!), there was no point in messingaround.I feel so much better having a clearer picture. He is a good surgeon, butreally doesn't volunteer much information. I am hoping for reconstruction,but I know that may not work. I've saved all the emails related to hearingaids, but will probably have more questions about those down the road.This is just such a long, rough road, that I wanted to share my good momentof feeling like I know what's up with you all. Thanks for being there.le

[Guest guest]

Thank, Jeff. You can fax it to me at 513-541-8224. My doctor did put a piece of my own cartilage in to hole the space after the first surgery. In the picture it looks like a huge piece and clearly it hasn't helped my hearing. I will be interested in seeing the article.

le

----------

From: Jeff Schwartzkopf <jeff.schwartzkopf@...>

cholesteatoma

Subject: RE: Latest news

Date: Wed, Dec 8, 2004, 6:00 PM

le,

I think the P is for Prosthetic. My Doc was going to use a procedure in which he uses my own cartlidge to connect the stapes to the eardrum. He gave me a paper on it which compared this method to PORP and it had a significantly higher success rate. I could fax it to you if you would like. email me direct with a fax number. I'll take a look at the paper this evening to verify.

Jeff Schwartzkopf

From: Michele [mailto:iambored97601@...]

Sent: Wednesday, December 08, 2004 4:52 PM

cholesteatoma

Subject: Re: Latest news

Hi le,

Glad you finally got some answers. I believe the procedure you are referring to is TORP, Total Ossicular Reconstruction Procedure. Not sure if that is right but it seems like I have seen TORP referred to in this way on other email.

Good luck to you and keep us posted.

Michele, Group Moderator

Bondurant <sbondurant@...> wrote:

Hi, everyone,

I have shared some of my frustrations with my doctor being so non

communicative on this site, so I wanted to update you about the visit I had

today. I made an appointment to have my almost 20 questions answered and it

seems to boil down to this -

Although my c-toma went to the oval and round windows,only the incus and

part of the malleus were harmed. When he does his second look surgery in a

couple of weeks,if there is little or now c-toma growth, he will put in a

titanium PORP [the o and r are ossicle (sp?) reconstruction, I don't recall

what the p's stand for] to replace the incus. If there is extensive c-toma

growth, he will do a CWD and be done with it. He said that in children and

those under 40, he would might not do that, but at my age (at 57, I think I

may be the oldest person in this group!), there was no point in messing

around.

I feel so much better having a clearer picture. He is a good surgeon, but

really doesn't volunteer much information. I am hoping for reconstruction,

but I know that may not work. I've saved all the emails related to hearing

aids, but will probably have more questions about those down the road.

This is just such a long, rough road, that I wanted to share my good moment

of feeling like I know what's up with you all. Thanks for being there.

le

[Guest guest]

le, I'm glad you had some time to sit and have your 20

questions answered. Also, I'll say a prayer or two that you won't

have any regrowth.

>

> Hi, everyone,

>

> I have shared some of my frustrations with my doctor being so non

> communicative on this site, so I wanted to update you about the

visit I had

> today. I made an appointment to have my almost 20 questions

answered and it

> seems to boil down to this -

>

> Although my c-toma went to the oval and round windows,only the

incus and

> part of the malleus were harmed. When he does his second look

surgery in a

> couple of weeks,if there is little or now c-toma growth, he will

put in a

> titanium PORP [the o and r are ossicle (sp?) reconstruction, I

don't recall

> what the p's stand for] to replace the incus. If there is extensive

c-toma

> growth, he will do a CWD and be done with it. He said that in

children and

> those under 40, he would might not do that, but at my age (at 57, I

think I

> may be the oldest person in this group!), there was no point in

messing

> around.

>

> I feel so much better having a clearer picture. He is a good

surgeon, but

> really doesn't volunteer much information. I am hoping for

reconstruction,

> but I know that may not work. I've saved all the emails related to

hearing

> aids, but will probably have more questions about those down the

road.

>

> This is just such a long, rough road, that I wanted to share my

good moment

> of feeling like I know what's up with you all. Thanks for being

there.

>

> le

[Guest guest]

Hi Phil

Thanks for the clarification. I kindof figured that out (P=partial), but it was a little too late.

Thanks again and I hope all is well with you.

MichelePhil <psmorris@...> wrote:

Hi

Just to confirm and slightly amend what's already been said:

PORP = Partial Ossicular Replacement Prosthesis and

TORP = Total Ossicular Replacement Prosthesis

Phil

Glad you finally got some answers. I believe the procedure you are referring to is TORP, Total Ossicular Reconstruction Procedure. Not sure if that is right but it seems like I have seen TORP referred to in this way on other email.

Good luck to you and keep us posted.

Michele, Group Moderator Bondurant <sbondurant@...> wrote:

Hi, everyone, I have shared some of my frustrations with my doctor being so noncommunicative on this site, so I wanted to update you about the visit I hadtoday. I made an appointment to have my almost 20 questions answered and itseems to boil down to this -Although my c-toma went to the oval and round windows,only the incus andpart of the malleus were harmed. When he does his second look surgery in acouple of weeks,if there is little or now c-toma growth, he will put in atitanium PORP [the o and r are ossicle (sp?) reconstruction, I don't recallwhat the p's stand for] to replace the incus. If there is extensive c-tomagrowth, he will do a CWD and be done with it. He said that in children andthose under 40, he would might not do that, but at my age (at 57, I think Imay be the oldest person in this group!), there was no

point in messingaround.I feel so much better having a clearer picture. He is a good surgeon, butreally doesn't volunteer much information. I am hoping for reconstruction,but I know that may not work. I've saved all the emails related to hearingaids, but will probably have more questions about those down the road.This is just such a long, rough road, that I wanted to share my good momentof feeling like I know what's up with you all. Thanks for being there.le

[Guest guest]

As Phil stated

PORP = Partial Ossicular Replacement Prosthesis

I reviewed the paper and it compares a technique called Double Cartlidge Block (DCB) to the PORP with significantly better results in certain situations. It may not be a fit for you, but it is certainly worth discussing with your doctor. Perhaps he doesn't use this technique. If not, my doc is the author and could probably recommend someone in your area.

I'll fax it tomorrow morning. It is quite interesting. Does anyone know of a way I could share it with the group? I only have a hard copy. Can I scan it and post is somwhere?

From: Bondurant [mailto:sbondurant@...] Sent: Wednesday, December 08, 2004 7:31 PMcholesteatoma Subject: Re: Latest news

Thank, Jeff. You can fax it to me at 513-541-8224. My doctor did put a piece of my own cartilage in to hole the space after the first surgery. In the picture it looks like a huge piece and clearly it hasn't helped my hearing. I will be interested in seeing the article.le----------From: Jeff Schwartzkopf <jeff.schwartzkopf@...>cholesteatoma Subject: RE: Latest newsDate: Wed, Dec 8, 2004, 6:00 PM

le, I think the P is for Prosthetic. My Doc was going to use a procedure in which he uses my own cartlidge to connect the stapes to the eardrum. He gave me a paper on it which compared this method to PORP and it had a significantly higher success rate. I could fax it to you if you would like. email me direct with a fax number. I'll take a look at the paper this evening to verify. Jeff Schwartzkopf

From: Michele [mailto:iambored97601@...] Sent: Wednesday, December 08, 2004 4:52 PMcholesteatoma Subject: Re: Latest newsHi le, Glad you finally got some answers. I believe the procedure you are referring to is TORP, Total Ossicular Reconstruction Procedure. Not sure if that is right but it seems like I have seen TORP referred to in this way on other email. Good luck to you and keep us posted. Michele, Group Moderator Bondurant <sbondurant@...> wrote:

Hi, everyone, I have shared some of my frustrations with my doctor being so noncommunicative on this site, so I wanted to update you about the visit I hadtoday. I made an appointment to have my almost 20 questions answered and itseems to boil down to this -Although my c-toma went to the oval and round windows,only the incus andpart of the malleus were harmed. When he does his second look surgery in acouple of weeks,if there is little or now c-toma growth, he will put in atitanium PORP [the o and r are ossicle (sp?) reconstruction, I don't recallwhat the p's stand for] to replace the incus. If there is extensive c-tomagrowth, he will do a CWD and be done with it. He said that in children andthose under 40, he would might not do that, but at my age (at 57, I think Imay be the oldest person in this group!), there was no point in messingaround.I feel so much better having a clearer picture. He is a good surgeon, butreally doesn't volunteer much information. I am hoping for reconstruction,but I know that may not work. I've saved all the emails related to hearingaids, but will probably have more questions about those down the road.This is just such a long, rough road, that I wanted to share my good momentof feeling like I know what's up with you all. Thanks for being there.le

[Guest guest]

Hi Jeff,

That would be great if you scanned and posted that to the site. If

you go to the files section of the c-toma site, you should be able

to upload it from there.

Thank you!

Michele, Group Moderator

>

>

>

> Hi, everyone,

>

> I have shared some of my frustrations with my doctor

> being so non

> communicative on this site, so I wanted to update you

> about the visit I had

> today. I made an appointment to have my almost 20

> questions answered and it

> seems to boil down to this -

>

> Although my c-toma went to the oval and round

> windows,only the incus and

> part of the malleus were harmed. When he does his

second

> look surgery in a

> couple of weeks,if there is little or now c-toma

growth,

> he will put in a

> titanium PORP [the o and r are ossicle (sp?)

> reconstruction, I don't recall

> what the p's stand for] to replace the incus. If

there

> is extensive c-toma

> growth, he will do a CWD and be done with it. He said

> that in children and

> those under 40, he would might not do that, but at my

> age (at 57, I think I

> may be the oldest person in this group!), there was

no

> point in messing

> around.

>

> I feel so much better having a clearer picture. He

is a

> good surgeon, but

> really doesn't volunteer much information. I am

hoping

> for reconstruction,

> but I know that may not work. I've saved all the

emails

> related to hearing

> aids, but will probably have more questions about

those

> down the road.

>

> This is just such a long, rough road, that I wanted

to

> share my good moment

> of feeling like I know what's up with you all. Thanks

> for being there.

>

> le

>

>

>

[Guest guest]

Okay, Tony, I am ready for you to attack!!!!

I saw the infectious disease specialist yesterday and learned I am no

longer a nice person. I almost started yelling, but I had a big fight

in any case.

He was one of the IDSA guys toeing the party line. There is no such

thing as Lyme. I never said my headache was Lyme, BTW. He said my

IgeneX tests meant nothing. That I had to have a positive ELISA.

Then he said no one in my family has Lyme. " After all, you know it's

not contagious from person to person. "

I just looked at him with disgust and said, " WE ALL GOT BIT BY TICKS

IN THE SAME BACK YARD WHERE WE LIVED 30 YEARS. "

Then I mentioned that I could care less whether my headache was

borrelia. I never said it was. Didn't he think I could have gotten a

brain infection from the nick on my sinuses.

He said, " The back of your nose is not your sinuses. Your sinuses are

the hollows in the bones below your eyes. "

I stared him in the eyes and said, " So you are saying that a nick in

the back of my nasal passage followed by extensive dental work the

next week could not have caused a brain infection? "

Reply: No.

Then I suggested that the only time the head pressure cleared and I

had a normal day in 16 months was the 8 weeks I was on penicillin VK.

He said, " That was placebo. "

I said, " No, it was not. I was on the stuff and after 5-7 days I

would notice out of the blue that the head pressure was gone and I

have worked all day without realizing it until around 10 pm. "

He just stared at me like I was a freak.

He refused to prescribe any penicillin to see if it worked. He was

afraid I would have side effects - it was dangerous. WHAT AN ASSHOLE.

So I started taking 4 grams of penicillin VK two days ago and

yesterday I worked all day. At 11 pm I was thinking, " Hum, what else

can I do today. " It was a great day.

Today it is 4:30, and I am looking forward to dinner with friends.

We shall see. Maybe it is just placebo effect or the Lyrica is

working better than usual, or I avoided mold today, or...

a Carnes