Just diagnosed

[Guest guest]

Lynda,

My heart goes out to you. I know pretty much how you feel. Our son

was finally diagnosed last year at age 5 w/ PDD in the Autism

Spectrum. We had previously been told they weren't sure whether it

was Autism or ADHD. We had hoped that it was ADHD, as it seems less

serious, and easier to treat, but were also glad to finally know what

it was so that we could start looking into the proper treatment

options.

The good news is that there is good reason to be hopeful that your

son will be exhibiting few of his current autistic behaviors by

adulthood. There are a lot of very helpful bio-chemical treatments,

and speech and occupational therapies available to that end. Though

you may be off to a late start, it's never too late, and your son's

diagnosis as high-functioning is encouraging.

This email group has proved to be an invaluable resource of

information and encouragement. I would also encourage you to go to

www.featnt.org and get their Introduction to Autism for new parents,

for starters

Also, you should buy some books on the subject. Search for " Autism "

at Amazon.com to find a slew of books on the subject and read reviews

from parents to gauge how useful the book may be for you. Then go

buy whatever you can find at Half-Priced Books that looks helpful, as

most of those are extremely cheap. One book in particular that I

highly recommend (and many others will vouch for this as well) is

Biological Treatments for Autism and PDD by Dr. Bernard Shaw. It's

not the easiest read in the world, but it's a great start towards

understanding some of the bio-chemical factors involved in Autism.

Blessed be,

> My 12 yr old son was just diagnosed with " high functioning

autism. " He is

> in the 7th grade and has previously been wrongly diagnosed as ADHD.

> However, further studies have determined that really doesn't " fit "

his

> symptoms (although the low dose Ritalin does help somewhat). I

would love

> the opportunity to visit with you and share resources, ideas,

thoughts, etc.

>

>

>

> I am trying very hard to have a positive outlook on this ...

although it is

> a struggle (as I'm sure you all well know). I do believe that now

that we

> finally know what is wrong, we can better know how to help him.

>

>

>

> Thank you for allowing me to join your group and to share ...

>

>

>

> ~Lynda

>

> Santa Fe, TX

>

>

>

>

>

>

>

>

[Guest guest]

My son also performed a lot better in school on a low dose of Ritalin. Once we

started the GFCF diet and gave him other nutritional supplements under a DAN

doctor's supervision, he was able to stop taking the Ritalin. He's actually

doing better without it. He has been diagnosed with PDD-NOS.

Glen Santos

just diagnosed

My 12 yr old son was just diagnosed with " high functioning autism. " He is in

the 7th grade and has previously been wrongly diagnosed as ADHD.

However, further studies have determined that really doesn't " fit " his

symptoms (although the low dose Ritalin does help somewhat).

[Guest guest]

My son also performed a lot better in school on a low dose of Ritalin. Once we

started the GFCF diet and gave him other nutritional supplements under a DAN

doctor's supervision, he was able to stop taking the Ritalin. He's actually

doing better without it. He has been diagnosed with PDD-NOS.

Glen Santos

just diagnosed

My 12 yr old son was just diagnosed with " high functioning autism. " He is in

the 7th grade and has previously been wrongly diagnosed as ADHD.

However, further studies have determined that really doesn't " fit " his

symptoms (although the low dose Ritalin does help somewhat).

[Guest guest]

I am sorry. Yes the news can be difficult . Hang in there. There is

support and help. Where is Clute, TX? Maybe we can find someone near you

that can give you a call. Liz ­ , TX suburb of Dallas.

On 3/31/04 10:44 AM, " alishasmom2001 " <alishasmom2001@...> wrote:

> Just 2 days ago my perfect daughter, my miracle baby, was diagnosed

> with PDD-NOS. We knew something was wrong. We never did believe

> that " she'll talk when she's ready. " While it feels good to have a

> name, it is a blow to us. I'm not sure what to think, what to hope

> for, what to do. It is a pain like I have never known. I feel like

> the hope and promise of the future is gone. In the meantime, I am

> trying to soak it all in and learn as much as I can. Alisha is 2

> years and 9 months. I would like to hear from anyone who can share

> with me information, experience or support. We live in Clute, TX.

>

>

>

> Unlocking Autism

> www.UnlockingAutism.org

>

> Autism-Awareness-Action

> Worldwide internet group for parents who have a

> child with AUTISM.

>

> SeekingJoyinDisability - Prayer support for those touched by Disability:

> SeekingJoyinDisability/

>

>

>

>

>

[Guest guest]

Hi,

I live in Alvin and am not to far from clute. You need to contact BACH ECI

130 Hospital Drive Angleton 77515, Texas Ph # 979-849-2447 or 877-714-1766.

These people are wonderful and very understanding. They also will give your

child excellent services. If you want further information you can e-mail me

privately.At one time there was an ASA chapter in Lake but I believe

that they are inactive. The closest one to us now is the one in Clear Lake,

which I know might as well be in Dallas. If you have any questions are need

further information please contact me privately and I will do as much as I

can to help.

[Guest guest]

,

I knew something was wrong long ago. I searched out BACH-ECI over a

year ago for the speech delay. They are wonderful and Alisha has

made progress. It is frustrating that I have been the one to

instigate everything. Friends, family, doctors and everyone were

happy to say that she would talk when she was ready and left it at

that. I searched out BACH-ECI. I searched out the developmental

pediatrics clinic. Having a name for this is both a relief and a

devastation. I would love to talk with you but for now, I'm off to

bed.

>

> Hi,

> I live in Alvin and am not to far from clute. You need to contact

BACH ECI

> 130 Hospital Drive Angleton 77515, Texas Ph # 979-849-2447 or 877-

714-1766.

> These people are wonderful and very understanding. They also will

give your

> child excellent services. If you want further information you can

e-mail me

> privately.At one time there was an ASA chapter in Lake but

I believe

> that they are inactive. The closest one to us now is the one in

Clear Lake,

> which I know might as well be in Dallas. If you have any questions

are need

> further information please contact me privately and I will do as

much as I

> can to help.

>

[Guest guest]

,

I knew something was wrong long ago. I searched out BACH-ECI over a

year ago for the speech delay. They are wonderful and Alisha has

made progress. It is frustrating that I have been the one to

instigate everything. Friends, family, doctors and everyone were

happy to say that she would talk when she was ready and left it at

that. I searched out BACH-ECI. I searched out the developmental

pediatrics clinic. Having a name for this is both a relief and a

devastation. I would love to talk with you but for now, I'm off to

bed.

>

> Hi,

> I live in Alvin and am not to far from clute. You need to contact

BACH ECI

> 130 Hospital Drive Angleton 77515, Texas Ph # 979-849-2447 or 877-

714-1766.

> These people are wonderful and very understanding. They also will

give your

> child excellent services. If you want further information you can

e-mail me

> privately.At one time there was an ASA chapter in Lake but

I believe

> that they are inactive. The closest one to us now is the one in

Clear Lake,

> which I know might as well be in Dallas. If you have any questions

are need

> further information please contact me privately and I will do as

much as I

> can to help.

>

[Guest guest]

Liz,

Thank you. We are far apart--I am south of Houston, very close to

the Gulf Coast but I am willing to network wherever I need to. Some

moments I am strong and hopeful and other moments I am sobbing.

Alisha is my miracle baby and I will do anything for her.

>

> > Just 2 days ago my perfect daughter, my miracle baby, was

diagnosed

> > with PDD-NOS. We knew something was wrong. We never did believe

> > that " she'll talk when she's ready. " While it feels good to

have a

> > name, it is a blow to us. I'm not sure what to think, what to

hope

> > for, what to do. It is a pain like I have never known. I feel

like

> > the hope and promise of the future is gone. In the meantime, I

am

> > trying to soak it all in and learn as much as I can. Alisha is 2

> > years and 9 months. I would like to hear from anyone who can

share

> > with me information, experience or support. We live in Clute,

TX.

> >

> >

> >

> > Unlocking Autism

> > www.UnlockingAutism.org

> >

> > Autism-Awareness-Action

> > Worldwide internet group for parents who have a

> > child with AUTISM.

> >

> > SeekingJoyinDisability - Prayer support for those touched by

Disability:

> > SeekingJoyinDisability/

> >

> >

> >

> >

> >

[Guest guest]

I am also from South Texas. I'm in Pearland. Hope to meet up with

some mothers and share experiences.

Ally

> >

> > > Just 2 days ago my perfect daughter, my miracle baby, was

> diagnosed

> > > with PDD-NOS. We knew something was wrong. We never did

believe

> > > that " she'll talk when she's ready. " While it feels good to

> have a

> > > name, it is a blow to us. I'm not sure what to think, what to

> hope

> > > for, what to do. It is a pain like I have never known. I

feel

> like

> > > the hope and promise of the future is gone. In the meantime,

I

> am

> > > trying to soak it all in and learn as much as I can. Alisha

is 2

> > > years and 9 months. I would like to hear from anyone who can

> share

> > > with me information, experience or support. We live in Clute,

> TX.

> > >

> > >

> > >

> > > Unlocking Autism

> > > www.UnlockingAutism.org

> > >

> > > Autism-Awareness-Action

> > > Worldwide internet group for parents who have a

> > > child with AUTISM.

> > >

> > > SeekingJoyinDisability - Prayer support for those touched by

> Disability:

> > > SeekingJoyinDisability/

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi Alisha's Mom,

You didn't sign the email so I didn't know how else to address you. You have

come to the right place! Many of us didn't have this support option when our

kids (grandkids) were diagnosed. There is more hope for us now than then. My

grandson who is soon to be 8 is under the treatment of a doctor in Austin. We

are seeing progress (healing?) since he started in January. I assume that the

earlier this treatment is started the better like all other interventions with

autism. If you are interested please email me at ckcarlson@....

[Guest guest]

Hi Alisha's Mom,

You didn't sign the email so I didn't know how else to address you. You have

come to the right place! Many of us didn't have this support option when our

kids (grandkids) were diagnosed. There is more hope for us now than then. My

grandson who is soon to be 8 is under the treatment of a doctor in Austin. We

are seeing progress (healing?) since he started in January. I assume that the

earlier this treatment is started the better like all other interventions with

autism. If you are interested please email me at ckcarlson@....

[Guest guest]

Oops! My name is . I am interested but it will just take

time for me to sift through it all and respond to everyone's

kindness!

> Hi Alisha's Mom,

>

> You didn't sign the email so I didn't know how else to address

you. You have come to the right place! Many of us didn't have this

support option when our kids (grandkids) were diagnosed. There is

more hope for us now than then. My grandson who is soon to be 8 is

under the treatment of a doctor in Austin. We are seeing progress

(healing?) since he started in January. I assume that the earlier

this treatment is started the better like all other interventions

with autism. If you are interested please email me at ckcarlson@e...

>

>

>

>

[Guest guest]

Oops! My name is . I am interested but it will just take

time for me to sift through it all and respond to everyone's

kindness!

> Hi Alisha's Mom,

>

> You didn't sign the email so I didn't know how else to address

you. You have come to the right place! Many of us didn't have this

support option when our kids (grandkids) were diagnosed. There is

more hope for us now than then. My grandson who is soon to be 8 is

under the treatment of a doctor in Austin. We are seeing progress

(healing?) since he started in January. I assume that the earlier

this treatment is started the better like all other interventions

with autism. If you are interested please email me at ckcarlson@e...

>

>

>

>

[Guest guest]

Ally,

I too would like to get together with other parents. I'm in Clute

so you are not too terribly far away.

> > >

> > > > Just 2 days ago my perfect daughter, my miracle baby, was

> > diagnosed

> > > > with PDD-NOS. We knew something was wrong. We never did

> believe

> > > > that " she'll talk when she's ready. " While it feels good to

> > have a

> > > > name, it is a blow to us. I'm not sure what to think, what

to

> > hope

> > > > for, what to do. It is a pain like I have never known. I

> feel

> > like

> > > > the hope and promise of the future is gone. In the

meantime,

> I

> > am

> > > > trying to soak it all in and learn as much as I can. Alisha

> is 2

> > > > years and 9 months. I would like to hear from anyone who

can

> > share

> > > > with me information, experience or support. We live in

Clute,

> > TX.

> > > >

> > > >

> > > >

> > > > Unlocking Autism

> > > > www.UnlockingAutism.org

> > > >

> > > > Autism-Awareness-Action

> > > > Worldwide internet group for parents who have a

> > > > child with AUTISM.

> > > >

> > > > SeekingJoyinDisability - Prayer support for those touched by

> > Disability:

> > > > SeekingJoyinDisability/

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

> > > >

> > > > > Just 2 days ago my perfect daughter, my miracle baby, was

> > > diagnosed

> > > > > with PDD-NOS. We knew something was wrong. We never did

> > believe

> > > > > that " she'll talk when she's ready. " While it feels good

to

> > > have a

> > > > > name, it is a blow to us. I'm not sure what to think,

what

> to

> > > hope

> > > > > for, what to do. It is a pain like I have never known. I

> > feel

> > > like

> > > > > the hope and promise of the future is gone. In the

> meantime,

> > I

> > > am

> > > > > trying to soak it all in and learn as much as I can.

Alisha

> > is 2

> > > > > years and 9 months. I would like to hear from anyone who

> can

> > > share

> > > > > with me information, experience or support. We live in

> Clute,

> > > TX.

> > > > >

> > > > >

> > > > >

> > > > > Unlocking Autism

> > > > > www.UnlockingAutism.org

> > > > >

> > > > > Autism-Awareness-Action

> > > > > Worldwide internet group for parents who have a

> > > > > child with AUTISM.

> > > > >

> > > > > SeekingJoyinDisability - Prayer support for those touched

by

> > > Disability:

> > > > >

SeekingJoyinDisability/

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

There is no silver bullet here at the Samters group.

You should look into the FILES section for some fundamental information.

If you're intersted in desensitization, then you can specifically read

samters/files/Desensitization-v3.html

Also, look at the LINKS section, and browse around the posting archives,

searching for keywords of specific interest to you.

PS -- you will find a lot of evidence here that recurrence of polyps after

surgery is MUCH quicker with Samterites than with the population at large.

Have fun.

regards,

Ken West

> From: " kmirrione " <kmirrione@...>

> Reply-samters

> Date: Tue, 27 Apr 2004 16:54:43 -0000

> samters

> Subject: Just diagnosed

>

> Hi, I just was diagnosed with Samters. I am scheduled for my first

> nasal surgery to have polyps removed on May 21st.

> How does one typically live with this? Constant prednisone

> treatments and nasal surgeries? My doctor mentioned that there was a

> study for aspirin desens, but he was not sure if that study was still

> going on. He had not sent anyone there in a couple of years. Does

> anyone have any info on this? What types of symptoms does one have

> to have in order to get in on this study?

> Thanks, e

[Guest guest]

I think if you are just having your first polypectomy- after it is completed- consider the ASA desens at Scripps- it was sort of like a miracle for me. CarolKen West <kenwest@...> wrote:

There is no silver bullet here at the Samters group.You should look into the FILES section for some fundamental information.If you're intersted in desensitization, then you can specifically readsamters/files/Desensitization-v3.htmlAlso, look at the LINKS section, and browse around the posting archives,searching for keywords of specific interest to you.PS -- you will find a lot of evidence here that recurrence of polyps aftersurgery is MUCH quicker with Samterites than with the population at large.Have fun.regards,Ken West > From: "kmirrione" <kmirrione@...>> Reply-samters > Date: Tue, 27 Apr 2004 16:54:43 -0000> To:

samters > Subject: Just diagnosed> > Hi, I just was diagnosed with Samters. I am scheduled for my first> nasal surgery to have polyps removed on May 21st.> How does one typically live with this? Constant prednisone> treatments and nasal surgeries? My doctor mentioned that there was a> study for aspirin desens, but he was not sure if that study was still> going on. He had not sent anyone there in a couple of years. Does> anyone have any info on this? What types of symptoms does one have> to have in order to get in on this study?> Thanks, e

[Guest guest]

Thanks for all the info! My doctor is going to look into Scripps.

Keeping my fingers crossed.... :-)

There is no silver bullet here at the

Samters group.

>

> You should look into the FILES section for some fundamental

information.

> If you're intersted in desensitization, then you can specifically

read

> samters/files/Desensitization-

v3.html

>

> Also, look at the LINKS section, and browse around the posting

archives,

> searching for keywords of specific interest to you.

>

> PS -- you will find a lot of evidence here that recurrence of

polyps after

> surgery is MUCH quicker with Samterites than with the population at

large.

>

> Have fun.

>

> regards,

> Ken West

>

> > From: " kmirrione " <kmirrione@y...>

> > Reply-samters

> > Date: Tue, 27 Apr 2004 16:54:43 -0000

> > samters

> > Subject: Just diagnosed

> >

> > Hi, I just was diagnosed with Samters. I am scheduled for my

first

> > nasal surgery to have polyps removed on May 21st.

> > How does one typically live with this? Constant prednisone

> > treatments and nasal surgeries? My doctor mentioned that there

was a

> > study for aspirin desens, but he was not sure if that study was

still

> > going on. He had not sent anyone there in a couple of years.

Does

> > anyone have any info on this? What types of symptoms does one

have

> > to have in order to get in on this study?

> > Thanks, e

>

>

>

[Guest guest]

Thanks for all the info! My doctor is going to look into Scripps.

Keeping my fingers crossed.... :-)

There is no silver bullet here at the

Samters group.

>

> You should look into the FILES section for some fundamental

information.

> If you're intersted in desensitization, then you can specifically

read

> samters/files/Desensitization-

v3.html

>

> Also, look at the LINKS section, and browse around the posting

archives,

> searching for keywords of specific interest to you.

>

> PS -- you will find a lot of evidence here that recurrence of

polyps after

> surgery is MUCH quicker with Samterites than with the population at

large.

>

> Have fun.

>

> regards,

> Ken West

>

> > From: " kmirrione " <kmirrione@y...>

> > Reply-samters

> > Date: Tue, 27 Apr 2004 16:54:43 -0000

> > samters

> > Subject: Just diagnosed

> >

> > Hi, I just was diagnosed with Samters. I am scheduled for my

first

> > nasal surgery to have polyps removed on May 21st.

> > How does one typically live with this? Constant prednisone

> > treatments and nasal surgeries? My doctor mentioned that there

was a

> > study for aspirin desens, but he was not sure if that study was

still

> > going on. He had not sent anyone there in a couple of years.

Does

> > anyone have any info on this? What types of symptoms does one

have

> > to have in order to get in on this study?

> > Thanks, e

>

>

>

[Guest guest]

Hi e,

sorry to hear about your diagnosis. I hvae been living with Samters

symptoms for at least 15 years and have had ups and downs.

I highly recommend the leukotriene antagonists such as Singulair,

especially after surgery, to help control the polyps. I personally

think prednisone is the worst way to go with this illness, and I only

take it if I absolutely have to. Not everyone would agree with

that. Years ago I was on steroids very frequently and found it did

nothing for my overall health in the long term. It just made me

worse overall. I thought there would be no way I could ever be off

of them, I was so sick all the time and in the hospital frequently,

but I did find a way. I did the aspirin desensitization twice and

found it bought me seven years of time in which I could make other

changes and other medications were discovered. ANd, yes, you can

still be desensitized to aspirin at Scripps among other places.

Currently I take Advair which I love which almost always completely

controls my asthma, Singulair 30 milligrams a day and Nasonex spray.

My symptoms are pretty well-controlled on those medications. I also

have made some dietary changes, among them trying to eat a lot less

fat, particularly animal fat, because it is possible that fat can

help contribute to the formation of leukotrienes, which cause some of

our symptoms. I also have tried to exercise more as I think that

helps, and if nothing else makes me stronger for the times when I do

have bad flare-ups.

Where are you located? I think it's important to find a specialist

who has dealt with a lot of patients with Samters if at all possible,

it sounds like your doctor may have.

Good luck to you

Lori

> Hi, I just was diagnosed with Samters. I am scheduled for my first

> nasal surgery to have polyps removed on May 21st.

> How does one typically live with this? Constant prednisone

> treatments and nasal surgeries? My doctor mentioned that there was

a

> study for aspirin desens, but he was not sure if that study was

still

> going on. He had not sent anyone there in a couple of years. Does

> anyone have any info on this? What types of symptoms does one have

> to have in order to get in on this study?

> Thanks, e

[Guest guest]

YOu can call Scripps yourself as well ...

I'm sure someone here has the number.

Lori

There is no silver bullet here at

the

> Samters group.

> >

> > You should look into the FILES section for some fundamental

> information.

> > If you're intersted in desensitization, then you can specifically

> read

> >

samters/files/Desensitization-

> v3.html

> >

> > Also, look at the LINKS section, and browse around the posting

> archives,

> > searching for keywords of specific interest to you.

> >

> > PS -- you will find a lot of evidence here that recurrence of

> polyps after

> > surgery is MUCH quicker with Samterites than with the population

at

> large.

> >

> > Have fun.

> >

> > regards,

> > Ken West

> >

> > > From: " kmirrione " <kmirrione@y...>

> > > Reply-samters

> > > Date: Tue, 27 Apr 2004 16:54:43 -0000

> > > samters

> > > Subject: Just diagnosed

> > >

> > > Hi, I just was diagnosed with Samters. I am scheduled for my

> first

> > > nasal surgery to have polyps removed on May 21st.

> > > How does one typically live with this? Constant prednisone

> > > treatments and nasal surgeries? My doctor mentioned that there

> was a

> > > study for aspirin desens, but he was not sure if that study was

> still

> > > going on. He had not sent anyone there in a couple of years.

> Does

> > > anyone have any info on this? What types of symptoms does one

> have

> > > to have in order to get in on this study?

> > > Thanks, e

> >

> >

> >

[Guest guest]

Dear e,

Welcome to our group. That is great that you have found a doctor who knows

a lot about Samters!

You could also try the Feingold diet or NAET treatments both of which have

helped me a lot. Maybe you could try them and if they don't work then go

to the Scrips clinic. You can find out more about them at www.feingold.org

or www.naet.com. The Feingold diet costs very little and can do wonders.

If you find you find you miss some foods too much or you have additional

allergies other than what the Feingold diet avoids you can get NAET

treatments to cure them. It really works! I'm glad you didn't need the

surgery. I believe that if you follow the Feingold diet your pollyps will

decrease or go away. I haven't had pollyp surgery since 1990 and I believe

it is the diet that has made the difference.

I live in Clayton which is close to Walnut Creek and Concord so I'm about 1

1/2 hours away. Maybe we could get together sometime!

Re: Just diagnosed

<< File: ATT00006.html >>

[Guest guest]

I am in the northern California group too- I live in Chico! Carol

RE: Re: Just diagnosed

Dear e,Welcome to our group. That is great that you have found a doctor who knows a lot about Samters!You could also try the Feingold diet or NAET treatments both of which have helped me a lot. Maybe you could try them and if they don't work then go to the Scrips clinic. You can find out more about them at www.feingold.org or www.naet.com. The Feingold diet costs very little and can do wonders. If you find you find you miss some foods too much or you have additional allergies other than what the Feingold diet avoids you can get NAET treatments to cure them. It really works! I'm glad you didn't need the surgery. I believe that if you follow the Feingold diet your pollyps will decrease or go away. I haven't had pollyp surgery since 1990 and I believe it is the diet that has made the difference.I live in Clayton which is close to Walnut Creek and Concord so I'm about 1 1/2 hours away. Maybe we could get together sometime!-----Original Message-----From: kmirrione [sMTP:kmirrione@...]Sent: Tuesday, May 11, 2004 12:52 PM samters Subject: Re: Just diagnosed<< File: ATT00006.html >>

[Guest guest]

Just diagnosed. If you are in the San jose area and you need a specialist - how about Dr Winston Vaughan at Stanford- He is head of the sinus center and has taken care of my sinus disease from hell for about 7 years. I think I was about his first patient. I think he is truly wonderful. Write me if you need to know more. Carol Re: Just diagnosed

Thank you for sharing your experience. My surgery has been postponed as the polyps decreased in size dramatically with the last prednisone treatment. However, I do realize that this is most likely temporary. I am following up with the ENT doctor in a few weeks. I am located in the San area and my Allergist seems to have a lot of info on this condition. I just had my Lung Function Test results sent to him and he is looking into the study in San Diego. I am concerned though because I want to have children in the next couple of years. I do not know if this will disqualify me from the study. I too am on Advair and since I started taking it have had total control of my asthma. I have not used my rescue inhaler at all since I started taking Advair. > > Hi, I just was diagnosed with Samters. I am scheduled for my first > > nasal surgery to have polyps removed on May 21st. > > How does one typically live with this? Constant prednisone > > treatments and nasal surgeries? My doctor mentioned that there was > a > > study for aspirin desens, but he was not sure if that study was > still > > going on. He had not sent anyone there in a couple of years. Does > > anyone have any info on this? What types of symptoms does one have > > to have in order to get in on this study?> > Thanks, e

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Hielo Bonnie, welcome

There's not mush information on ctoma numbers but it's sometimes said to occur in roughly one per 20,000 of the population. That means there are plenty of people with the disease but not common enough that you'd automatically know anyone else with it.

Ctoma gets worse the longer you have it but isn't a very rapidly developping do disease. So unless you have very advanced symptoms (face paralysis and vertigo etc), emergency surgery isn't esssential. In most cases, waiting a month or two won't make any real difference.

Your ear will heal fafter the operation but no-one but the doctor can say what your hearing might be like. It would depend on how much damage has already been done. Ctoma usually destroys some or all of the middle ear bones that conduct sound to the inner ear, the infections that often accompany ctoma can spread the inner ear itself. If you're are still heaing with your right ear at present, you may find that you hear less well after surgery. The ctoma itself can sometimes act as a sound bridge in cases where the ear bones are damaged so removing it can make the hearing worse. Also , if the ear bones are still present but diseased , they may need to removed during surgery. A lot of people undergo hearing resonstruction (fitting a middle ear prosthesis to replace the bones) a year or two down the line once it's been established that the ctoma hasn't returned. Cat scans aren't definitive but should give the doctor an indication of how awidespread the condition is. .Good luck

Phil

hello,my name is bonnie,i am 25 and been diagnosed a week ago with acholesteatoma in my right ear(after a check up about a largeperferation in my left ear),i had a cat scan yesterday and have towait 3 more days to go over my results with the ear specialist.Sincethe diagnosis i have been searching for info on this disease.I am veryreleaved to have found this site!!!its comforting to know i am not theonly one going through all this and feel very lucky/privleged thatalthough i have a very low income, in australia we have a publichealth system,which means i can have surgery immediatly,without thefurther stress of finance.There are a couple of questions you might be able to help me withhow commen is the disease?is it commen for doctors to sugest immediate surgery?will my right ear recover from surgery,will i be able to hear with myright ear?thanks,bon.