CT Scans

[Guest guest]

Hi,

I wouldn't be too concerned about not having CT scans. Some doctors do, some don't. My husbands doctor here in town did a CT scan (he is an ENT) and when he had to go to Portland to see an otolgist for his other ear, the doctor said a CT scan was totally unnecessary. Even if you have a CT scan done, it usually doesn't tell the whole story. If you read a lot of papers and research on cholesteatoma, having a CT scan done or not is something that depends on the doctor. Surgeons really and truly don't know what they are going to find with c-toma until they are actually doing the operation.

I really wouldn't worry about it too much, however, if it would make you more comfortable to have one, talk with your doctor, share your concerns with him/her, and go from there.

Good luck and please keep us posted.

Michele, Group Moderatormharbourpope <mharbour@...> wrote:

Has everyone's doctor done a CT Scan before surgery to verify a cholesteatome? I am getting ready for my second surgery and have not had to have a scan either time. I am concerned that it might also be in my other ear because I am having the same type of pain. Should I be concerned that my doctor has not recommended a scan?

[Guest guest]

I've had 3 operations and only one CT scan. They don't always show C-tomas on the images which is why you can't totally base your diagnosis on a CT scan. Many people have done CT scans with nothing showing up as C-toma and doing the surgery to find it. They're not all that reliable.mharbourpope <mharbour@...> wrote:

Has everyone's doctor done a CT Scan before surgery to verify a cholesteatome? I am getting ready for my second surgery and have not had to have a scan either time. I am concerned that it might also be in my other ear because I am having the same type of pain. Should I be concerned that my doctor has not recommended a scan?

[Guest guest]

My son's Dr did a CT scan before surgery to determine the extent of

the " spreading " of the C-toma. He knew it was there, he wanted to

know how invasive it was.

Has everyone's doctor done a CT

Scan before surgery to verify a

> cholesteatome? I am getting ready for my second surgery and have

not

> had to have a scan either time. I am concerned that it might also

be

> in my other ear because I am having the same type of pain. Should

I

> be concerned that my doctor has not recommended a scan?

>

>

>

>

>

[Guest guest]

Our initial doctor did a catscan only to confirm his suspicion that it was a c-toma. I believehe did this since my son did not have a normal presentation of a c-toma patient…turns out it was congenital (he was bornwith it). The surgeon mentioned that with a c-toma,the catscan is generally considered unnecessary. He is an otologistthat came with the highest recommendation, has done a superior job with my son’scase and I would trust that opinion. So, you can probably rest easy. Hope that helps, Tara -----Original Message-----From: mharbourpope[mailto:mharbour@...] Sent: Wednesday, September 08,2004 10:50 AMcholesteatoma Subject: CT Scans Has everyone's doctor done a CT Scan before surgery toverify a cholesteatome? I am getting ready for mysecond surgery and have not had to have a scan either time. I amconcerned that it might also be in my other ear because I am having the same typeof pain. Should I be concerned that my doctor has not recommended ascan? This Cholesteatoma support group offers and provides information of a general natureabout cholesteatoma as well as members personal experiences with this disease.The information provided is not intended to replace surgical or medical adviceor recommendations. Any information in the messages, postings or articles onthe web site should not be considered a substitute for consultation with amedical professional to address individual medical needs. Individuals'particular facts and circumstances will determine the treatment which is mostappropriate.

[Guest guest]

Hello,

Most people who have had CT scans done have had them only to confirm

the presence of c-toma. Sometimes c-toma does not show on the scan

and is only found during surgery. Also, although a CT scan can

indicate the general position of a c-toma, very rarely is it

accurate as to the size. In a lot of cases, the c-toma is larger,

sometimes much larger, than indicated on the CT scan.

Sometimes I think this can break down to who has insurance, and who

does not. Unfortuneatly, we fall into the category of those who do

not, and I would elect not to have a ct scan unless the doctor gave

me a compelling explanation to change my mind.

So, as you can see, ct scans and whether or not to do them is really

not on a case by case basis, but whether or not the physician wants

one.

Michele, Group Moderator

Has everyone's doctor done a

CT

> Scan before surgery to verify a

> > cholesteatome? I am getting ready for my second surgery and

have

> not

> > had to have a scan either time. I am concerned that it might

also

> be

> > in my other ear because I am having the same type of pain.

Should

> I

> > be concerned that my doctor has not recommended a scan?

> >

> >

> >

> >

> >

[Guest guest]

Hello,

It should also be noted that, unless a CT scan is absolutely needed, you should opt out of having one. CT scans can be very harmful (due to the radiation) if you go through too many of them throughout your lifetime.Michele <iambored97601@...> wrote:

Hi,

I wouldn't be too concerned about not having CT scans. Some doctors do, some don't. My husbands doctor here in town did a CT scan (he is an ENT) and when he had to go to Portland to see an otolgist for his other ear, the doctor said a CT scan was totally unnecessary. Even if you have a CT scan done, it usually doesn't tell the whole story. If you read a lot of papers and research on cholesteatoma, having a CT scan done or not is something that depends on the doctor. Surgeons really and truly don't know what they are going to find with c-toma until they are actually doing the operation.

I really wouldn't worry about it too much, however, if it would make you more comfortable to have one, talk with your doctor, share your concerns with him/her, and go from there.

Good luck and please keep us posted.

Michele, Group Moderatormharbourpope <mharbour@...> wrote:

Has everyone's doctor done a CT Scan before surgery to verify a cholesteatome? I am getting ready for my second surgery and have not had to have a scan either time. I am concerned that it might also be in my other ear because I am having the same type of pain. Should I be concerned that my doctor has not recommended a scan?

[Guest guest]

If anyone wants more detailed information on the subject Of CT scans there is a downloadable PDF entitled

"The Value of Pre-operative High Rresolution CT Scans in Cholesteatoma Surgery"

which you can find on this site:

http://www.sma.org.sg/smj/smjmainpges/4204main.html

It's over 2 MB - so may be if you're using dialup!

Phil

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.745 / Virus Database: 497 - Release Date: 27/08/04

[Guest guest]

Dear Gordon,

I

Thanks for the article, I will add it to the reports I have. It depends upon

how you want to read this report as to what your findings will be, but even

though they dance all around the fact that one CT Scan can cause cancer, they do

admit clearly that several CT Scans does raise the probability for cancer from

having the Scans.

Quite simply in light of this report by itself I would definitely choose the

available MRI with MS-325 contrast and/or Ultra Sound. Especially if the doc

only wants to see the size of nodes in the body that significance associated to

" Size " is easily picked up by Ultra Sound and your local radiology doctors or

techs should verify that. Also, why would you want to take a chance even to be

one in two thousand people. I think we as CLL patients have all ready

demonstrated that we are the kind of people that do develope from less odds than

one in 2000.

Also, in my local radiology lab in Sacramento they may have the MS-325 contrast

available, they are calling me back to verify. I will let everyone know as soon

as I know.

Kurt.

-------------- Original message ----------------------

From: Gordon Dobler <gj628dobler@...>

[Guest guest]

Gordon,

While it is true that CT does expose one to radiation, so does flying in a jet

airplane, and driving across the Golden Gate Bridge wears is out, the question

is how much.

Dan Hill

Re: CT scans

Dear Gordon,

I

Thanks for the article, I will add it to the reports I have. It depends upon

how you want to read this report as to what your findings will be, but even

though they dance all around the fact that one CT Scan can cause cancer, they do

admit clearly that several CT Scans does raise the probability for cancer from

having the Scans.

Quite simply in light of this report by itself I would definitely choose the

available MRI with MS-325 contrast and/or Ultra Sound. Especially if the doc

only wants to see the size of nodes in the body that significance associated to

" Size " is easily picked up by Ultra Sound and your local radiology doctors or

techs should verify that. Also, why would you want to take a chance even to be

one in two thousand people. I think we as CLL patients have all ready

demonstrated that we are the kind of people that do develope from less odds than

one in 2000.

Also, in my local radiology lab in Sacramento they may have the MS-325

contrast available, they are calling me back to verify. I will let everyone

know as soon as I know.

Kurt.

-------------- Original message ----------------------

From: Gordon Dobler <gj628dobler@...>

[Guest guest]

Dan:

You asked the critical question---How much??? Each day our environment

assaults our human body--chemicals, what we eat or drink, etc. The next

question about our disease is it nature or nurture?

Then a glass of Southern Comfort helps easy the pain of thinking about these

questions. Cheers

Gordon

Dan Hill <hvwk95a@...> wrote:

Gordon,

While it is true that CT does expose one to radiation, so does flying in a jet

airplane, and driving across the Golden Gate Bridge wears is out, the question

is how much.

Dan Hill

Re: CT scans

Dear Gordon,

I

Thanks for the article, I will add it to the reports I have. It depends upon how

you want to read this report as to what your findings will be, but even though

they dance all around the fact that one CT Scan can cause cancer, they do admit

clearly that several CT Scans does raise the probability for cancer from having

the Scans.

Quite simply in light of this report by itself I would definitely choose the

available MRI with MS-325 contrast and/or Ultra Sound. Especially if the doc

only wants to see the size of nodes in the body that significance associated to

" Size " is easily picked up by Ultra Sound and your local radiology doctors or

techs should verify that. Also, why would you want to take a chance even to be

one in two thousand people. I think we as CLL patients have all ready

demonstrated that we are the kind of people that do develope from less odds than

one in 2000.

Also, in my local radiology lab in Sacramento they may have the MS-325 contrast

available, they are calling me back to verify. I will let everyone know as soon

as I know.

Kurt.

-------------- Original message ----------------------

From: Gordon Dobler

[Guest guest]

well, a scan can show you that something is there, but it is often hard to tell exactly how involved these tumors are. My son's scan didn't show bone involvement but all three hearing bones were destroyed. They just can't tell for sure until they are in there. I really hope your son's scan is accurate though.

joycelyn

[Guest guest]

Marcus - I have been told that the CT uses minimal rays - however, rays are rays, and so it should not be overdone

In the case of CLL, probably somewhere along the line you would have a so called "baseline" CT, used to determine how you're doing going forward. They sometimes called this part of "staging" of your disease.

Then, the issue becomes one of repeat scans. In my opinion, I stress "in my opinion", the physician can usually palpate groin, armpits, neck, other areas, to check increasing lymphadenopathy. If these palpations do not indicate excessive lymph node growth, I do not believe that frequent CTs are necessary.

If the physician finds a lot of node activity, or if you have other symptoms, it may be useful to recheck what's going on inside your body.

Now, to the issue of scans in general, not necessarily for CLL. If our medical system allowed very occasional CT scanning, a lot of deaths could be prevented. For example, once you have symptoms of lung cancer, liver cancer, pancreatic cancer, it is generally too late to do something about it. BUT, a CT might discover a lung nodule while it can be dealt with surgically, and be over and done with.

I do not see the day in the near future where our medical systems will allow this.

A friend recently discovered a lung cancer while being CTd for something else. Lucky for him, it became a non issue.

Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

Hi

Thank you for your reply.

So bearing in mind I have been in, wait and watch for the last six

years and because of my numbers from blood tests, my consultant has

decided to start my chemo in March.

I was first diagnosed due to a large painful lump in my neck and over

the last six years have suffered unexplained discomfort under my

armpits, although the consultant has examined me externally and states

my glands are fine, he still states that a CT scan is not warranted.

The discomfort under my arms has now got to the stage where I am now

loosing sleep due to the discomfort, plus some discomfort occasionally

in my neck, should I be insisting on a scan to qualify the

situation or am I getting paranoid.

Marcus

>

> Marcus - I have been told that the CT uses minimal rays - however,

rays are

> rays, and so it should not be overdone

>

> In the case of CLL, probably somewhere along the line you would have

a so

> called " baseline " CT, used to determine how you're doing going

forward. They

> sometimes called this part of " staging " of your disease.

>

> Then, the issue becomes one of repeat scans. In my opinion, I stress

" in my

> opinion " , the physician can usually palpate groin, armpits, neck,

other areas,

> to check increasing lymphadenopathy. If these palpations do not

indicate

> excessive lymph node growth, I do not believe that frequent CTs are

necessary.

>

> If the physician finds a lot of node activity, or if you have other

> symptoms, it may be useful to recheck what's going on inside your body.

>

> Now, to the issue of scans in general, not necessarily for CLL. If our

> medical system allowed very occasional CT scanning, a lot of deaths

could be

> prevented. For example, once you have symptoms of lung cancer, liver

cancer,

> pancreatic cancer, it is generally too late to do something about

it. BUT, a CT

> might discover a lung nodule while it can be dealt with surgically,

and be over

> and done with.

>

> I do not see the day in the near future where our medical systems

will allow

> this.

>

> A friend recently discovered a lung cancer while being CTd for

something

> else. Lucky for him, it became a non issue.

>

>

>

>

>

> **************Ideas to please picky eaters. Watch video on AOL

Living.

>

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

> 2050827?NCID=aolcmp00300000002598)

>

[Guest guest]

Sorry

Forgot to mention, he also on my last visit last week told me my

spleen is slightly enlarged now also.

Marcus

> >

> > Marcus - I have been told that the CT uses minimal rays - however,

> rays are

> > rays, and so it should not be overdone

> >

> > In the case of CLL, probably somewhere along the line you would have

> a so

> > called " baseline " CT, used to determine how you're doing going

> forward. They

> > sometimes called this part of " staging " of your disease.

> >

> > Then, the issue becomes one of repeat scans. In my opinion, I stress

> " in my

> > opinion " , the physician can usually palpate groin, armpits, neck,

> other areas,

> > to check increasing lymphadenopathy. If these palpations do not

> indicate

> > excessive lymph node growth, I do not believe that frequent CTs are

> necessary.

> >

> > If the physician finds a lot of node activity, or if you have other

> > symptoms, it may be useful to recheck what's going on inside your

body.

> >

> > Now, to the issue of scans in general, not necessarily for CLL. If

our

> > medical system allowed very occasional CT scanning, a lot of deaths

> could be

> > prevented. For example, once you have symptoms of lung cancer, liver

> cancer,

> > pancreatic cancer, it is generally too late to do something about

> it. BUT, a CT

> > might discover a lung nodule while it can be dealt with surgically,

> and be over

> > and done with.

> >

> > I do not see the day in the near future where our medical systems

> will allow

> > this.

> >

> > A friend recently discovered a lung cancer while being CTd for

> something

> > else. Lucky for him, it became a non issue.

> >

> >

> >

> >

> >

> > **************Ideas to please picky eaters. Watch video on AOL

> Living.

> >

>

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

> > 2050827?NCID=aolcmp00300000002598)

> >

>

[Guest guest]

Sorry . Next time I'll talk to my CI surgeon and/or audi instead. I didn't

mean to confuse anyone on the list.

Bilateral Cochlear CIs

December 2004 and February 2006

Deafblind/Postlingual

---- M Jansen <nucleus24@...> wrote:

> Hi ,

> NO CT scans are NOT magnetic. That's why you can get one. The only

> thing that is magnetic is the MRI, and you cannot even be in the same

> room with the machine. Why? Because you cannot turn off a magnet.

> See what happens when a worry wart worris on line! Hi !

>

>

> CT scans are magnetic? If that were the case then wouldn't CT scans be

> contraindicated for those with implants?

>

> In any case, I left my processors on the table in the room and everything

>

> was fine. So no problems holding them or having them in the room.

>

> ____________________________________________________________

> Get a degree and open new doors. Click to find flexible and affordable

programs now.

>

http://thirdpartyoffers.juno.com/TGL2141/fc/PnY6rw2kA32VYlHV4Hji4fyiOUf0kJtlS69h\

dE6NFZ7R1GROcU7Uv/

>

>

[Guest guest]

I think after I have my CT scan on Wednesday I'll keep the results to myself so

I don't alarm anyone. On various forums it seems that all I do lately is post

messages that cause some kind of concern one way or another, so I think I'm

going to start being a lurker instead.

Bilateral Cochlear CIs

December 2004 and February 2006

Deafblind/Postlingual

[Guest guest]

,

One way or the other, we are very interested in your CT Scan

results. Please feel free to post them unless you wish personally to

keep the results private. We're here to support you thru this. I'm

hoping that there is nothing to worry about but I do know what it

feels like to worry about the results.

Alice

http://www..com

>

> I think after I have my CT scan on Wednesday I'll keep the results

to myself so I don't alarm anyone. On various forums it seems that all

I do lately is post messages that cause some kind of concern one way

or another, so I think I'm going to start being a lurker instead.

>

>

> Bilateral Cochlear CIs

> December 2004 and February 2006

> Deafblind/Postlingual

>

[Guest guest]

Please don't disappear again, ! You are not causing us stress. We hope

to be able to support you, no matter what. Not knowing is the enemy. We're

so thrilled to have you back. You are an inspiration to all of us who think

we're in a " tight spot " . We understand if you want to keep it to yourself, but

please stay connected! Jackie <hugs>

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De

cemailfooterNO62)

[Guest guest]

I second what Alice says!

On Mon, 26 Jan 2009 1:56, Alice wrote:

> ,

>

> One way or the other, we are very interested in your CT Scan

> results. Please feel free to post them unless you wish personally to

> keep the results private. We're here to support you thru this. I'm

> hoping that there is nothing to worry about but I do know what it

> feels like to worry about the results.

>

> Alice

> http://www..com

>

>

>>

>> I think after I have my CT scan on Wednesday I'll keep the results

> to myself so I don't alarm anyone. On various forums it seems that all

> I do lately is post messages that cause some kind of concern one way

> or another, so I think I'm going to start being a lurker instead.

>>

>>

>> Bilateral Cochlear CIs

>> December 2004 and February 2006

>> Deafblind/Postlingual

>>

>

>

The Cat addicted to hearing, MEOW!!!

~ Kitty S. ~

Cochlear Volunteer

IMP'D-R: 09.07.06 L: 09.04.08 (Freedom CA)

ACT'D-R: 09.22.06 L: 09.15.08

HOSPITAL: Northwestern Memorial

SURGEON: Dr. Alan Micco

AUDI: Pamela J. Fiebig

THE DCE CAFE: To join, send blank email to

DeafCIEars-subscribe

[Guest guest]

My moods are out of sync right now due to my bipolar. Because of that, I would

prefer to lurk for awhile. Hope you and others on the list understand.

Bilateral Cochlear CIs

December 2004 and February 2006

Deafblind/Postlingual

---- Alice <alice@...> wrote:

> ,

>

> One way or the other, we are very interested in your CT Scan

> results. Please feel free to post them unless you wish personally to

> keep the results private. We're here to support you thru this. I'm

> hoping that there is nothing to worry about but I do know what it

> feels like to worry about the results.

>

> Alice

> http://www..com

>

>

> >

> > I think after I have my CT scan on Wednesday I'll keep the results

> to myself so I don't alarm anyone. On various forums it seems that all

> I do lately is post messages that cause some kind of concern one way

> or another, so I think I'm going to start being a lurker instead.

> >

> >

> > Bilateral Cochlear CIs

> > December 2004 and February 2006

> > Deafblind/Postlingual

> >

>

>

[Guest guest]

I won't leave the list, Jackie. I'm just going to lurk in the background for

awhile. It's best so that I don't rapid cycle due to my bipolar. Hope you

understand.

Bilateral Cochlear CIs

December 2004 and February 2006

Deafblind/Postlingual

---- Flashwun@... wrote:

> Please don't disappear again, ! You are not causing us stress. We hope

> to be able to support you, no matter what. Not knowing is the enemy. We're

> so thrilled to have you back. You are an inspiration to all of us who think

> we're in a " tight spot " . We understand if you want to keep it to yourself,

but

> please stay connected! Jackie <hugs>

> **************A Good Credit Score is 700 or Above. See yours in just 2 easy

> steps!

>

(http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De

> cemailfooterNO62)

>

>

>

[Guest guest]

,

Please stay on board, & please share your CT results. I am interested in

knowing.

[Guest guest]

Of course we understand, . Just don't lose my personal e-mail address so

you can vent if you feel the need. I'm here. Hope you get through this

quickly. Jackie

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

(http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De

cemailfooterNO62)

[Guest guest]

,

Sure, I'll be happy to. I'm sorry about my earlier posts to the list. When my

moods change as often as they do, it's easy for me to interpret things

incorrectly.

My tactile terp is all set for Wednesday. I'll be sure to let you know how

everything goes at that time.

Bilateral Cochlear CIs

December 2004 and February 2006

Deafblind/Postlingual

---- <wdywms@...> wrote:

> ,

> Please stay on board, & please share your CT results. I am interested in

> knowing.

>

>

[Guest guest]

,

I wont repeat what others are saying, I will just say that we are with

you and tomorrow will be a no brainer. Errr, yuh know. I will have a

mocha for yuh today, ok? Two? Sure thing. LOL Hugs.

*---* *---* *---* *---* *---*

I was trying to daydream, but my mind kept wandering.

& Dreamer Doll ke7nwn

E-mail-

rclark0276@...

Home Page-

http://webpages.charter.net/dog_guide/