New Member

Report post · September 16, 2003

I'm glad to see I'm not the only one getting really tired when I

take the lex. Like the first day I took a whole 10mg pill (I had to

take 1/2 pills for the first couple of days to make sure I didn't

have a bad reaction to it.) I slept for the whole day! I'm about to

start trying cutting my pills in half and taking half in the morning

and half at night. I just feel like taking it at night makes me

lose half of the benifits of the drug since I'm asleep when they

start working and it starts wearing off towards the end of the day.

i just recently switched to Lex after being on Welbutrin for four

months. I think I built up an immunity to that and that's why my dr

switched me. But like you, I also went through a very stressful

point, so my depression got a lot worse anyway and the Welbutrin

just wasn't cuttin' it anymore.

Anyway, welcome to the group, you'll find a lot of support here...I

know I have

> Hi there,

>

> Im new here. i have been on lexapro for about 6 months now. have

any

> ov you that have been on 10mg seem like you get immune to it? i

have

> not been on alot of antidepressants but depression is really high

in

> my family, so my doc suggested this. it has done wonders. the

reason

> she gave me lex was because i have been gaining lots of weight

over

> the last year and this is supposed to have the least amount of

weight

> gain as a side effect. i have to take it at night, it still makes

me

> wwwwaaaaaaayyyy too tired to function during the day.... and

> considering all i do all day is work with numbers at the computer,

i

> could almost fall asleep while working, it was aweful. it was

> working just fine until lately... but also my stress level has

went

> up. My daughter has ocd and maybe bipolar, and my son (though i

love

> him) is some times a little monster for me! Im divored and just

> bought my 2nd house (sold the first one) so im under alot of

stress.

> I do have a lower sex drive, but that is a good thing since im not

> dating any way. i do also get an upset stomach if i dont take it

> with food. i have a doc appt next week and im wondering if i

should

> ask her to increase it. so that is my into... sorry its so long,

> but i just love the fact that i will be able to communicate with

some

> others on lex. its such a new drug and im new to taking anti

> depressants (though not new to deprerssion... my mom was manic

> depressive and my sister is really messed up and wont take her

meds

> right all the time, she is on effexor, and skips pills all the

time

> when she cant afford to get them....) any way any advice and info

> will be appreaciated. Hope you all have a great day!!!

>

> Bye,

>

Report post · October 9, 2003

Hey evie,

I am actually going in on the 24th because my ctoma came back after 4 and half years free of this monster.

Any questions you have please don't hesitate to ask. Everyone here is very able and willing to help and offer support and advice.

You can add me to messenger if you have it. emilia1023@...

Take care,

Evie <naste_eves@...> wrote:

Hi everyone well about 18 months ago I went into hospital for a 2 hour operation to have my cholesteatoma removed in my left ear, but in the process they had to remove 2 of my hearing bones and 3/4 of my ear drum. I am a student who finds it very difficult to hear in my classroom because I only have 20% hearing in my left ear. Just recently I have been told that it's grown back and I hae to visit a new specialist. I joined this group because I wanted to see if there were others out there just like me who go through the same thing so I can have support. thanks evie

Report post · October 9, 2003

Evie -

Yes, I have yet to experience the reprecussions of the surgery since I had it

only 2 weeks ago. They had to do quite a bit of reconstruction surgery on my

ear bones as well. All I know is that if I have trouble seeing I wear my

glasses and if I have trouble hearing... I'll have to get a hearing aid. Too

bad they don't call them seeing aids as well. Then the stigma of having it is

fully excepted by today's society. Don't feel bad if you have to get one or

already have one.

-

On Thu, 09 Oct 2003 03:29:05 -0000, Evie wrote

> Hi everyone well about 18 months ago I went into hospital for a 2

> hour operation to have my cholesteatoma removed in my left ear, but

> in the process they had to remove 2 of my hearing bones and 3/4 of

> my ear drum. I am a student who finds it very difficult to hear in

> my classroom because I only have 20% hearing in my left ear. Just

> recently I have been told that it's grown back and I hae to visit a

> new specialist. I joined this group because I wanted to see if

> there were others out there just like me who go through the same

> thing so I can have support. thanks evie

>

Report post · November 7, 2003

Welcome to the group Jill.It is amazing how SSRI's can work so

differently with us .That is why this group is so important.We can

get information about drugs , but the BEST way to understand and get

information on a medication is by talking to other people on the

drug, and comparing notes .

Glad to have you aboard.

Hugs

Plagal aka

Lesli

> I've been on tons of anti depressants. I was on Celexa for a

while, from

> 2000-2001, then got pregnant and got off of it. After I finished

nursing my

> child I went back on it, but this time it didn't seem to work so my

family

> practice doctor told me about Lexapro. She started me on 20 mg.

At first I

> thought it did a better job than Celexa, but lately I've been

having more

> episodes. As far as side effects I don't think I have any,

although I am

> always sick. I'm always tired, sleep all the time, every chance I

get and I

> have bad headaches (Prozac gave me bad headaches too, so it could

be the

> Lexapro). No sexual dysfunction or dry mouth - which is what a lot

of the

> other meds did for me.

>

> Background:

>

> I'm 32 years old, married for 6 years and have a 19 month old

daughter. I

> live in NM, although I have lived all over the place - CA, TX, WA,

VA, MA,

> CO. I was originally diagnosed with PTSD and Dysthymia back in

1994.

>

> Jill

>

Report post · December 2, 2003

Hi Sheila,

Welcome to the group. I'm sorry you are dealing with hearing loss. It is

difficult to try to communicate by speaking and lipreading. Knowing ASL must be

beneficial to you when you need it. I lost my hearing too late in life to be

able to learn although I tried.

I was a bit stumped when I read about your hearing aid but I did look up

DigiFocus II and see it is made by Oticon. I have always heard that their

products were very good, although I never used them.

When I experienced the rapid drop in hearing, I also experienced a rapid

increase in tinnitus and dizziness. My hearing history is not the same as yours

but there are others on the list who also are deaf due to German Measles. I am

sure that you will see responses. It will be interesting to hear if they have

shared your hearing loss experiences.

Good luck at your appointment on Thursday. House Ear has the reputation of

being one of the best centers. My surgeon here in Albuquerque trained at House

Ear. I hope they can answer your questions. Please let us know how things go.

Alice

Report post · December 21, 2003

Hi Charlene,

i've been swimming and doing all the stuff that they say not to do after the operations. all i use is the wax and i mole it to my ear and it seals my ear. well i hope to hear from you again.

~ leanon <charlene_playdoh@...> wrote:

Hi, I'm new here also. I'm 19 and had cholesteatoma. I recently had a check up after getting discharge. But since the operation 4 years ago I have been ok, except that I havent been swimming since I was 11 years old because of this disease. Anyway, I have read through some of your stories and am glad to hear that there are others in the same condition as me. Thank you!CHARLENE

Report post · December 26, 2003

Hi le, I wanted to know what kind of wax do you use? I am one

of those who would never dare to try swimimg, sence all my

experiences with this bad ear! I had C-toma surgery in the early

80's, and many reconstructive surgeries, still going through all

this, as I recently had the middle ear and the estachion tube sealed,

due to drainage. I wasnt diagnosed with the C-toma till the 80's

although mine was congential. I use cotton balls and vasaliene to

keep water out of my ears. I was wondering about the wax you

mentioned. I have seen wax molds that can be shaped to fit your ear,

in the store. Is this what your using? Sounds interesting, and

easier to use! Happy New Year!

> Hi,

>

> I'm new here also. I'm 19 and had cholesteatoma. I recently had a

> check up after getting discharge. But since the operation 4 years

> ago I have been ok, except that I havent been swimming since I was

> 11 years old because of this disease. Anyway, I have read through

> some of your stories and am glad to hear that there are others in

> the same condition as me.

>

> Thank you!

> CHARLENE

>

Report post · December 28, 2003

Thank you le, I will check it out when I go to the store again.

> > Hi,

> >

> > I'm new here also. I'm 19 and had cholesteatoma. I recently had a

> > check up after getting discharge. But since the operation 4 years

> > ago I have been ok, except that I havent been swimming since I

was

> > 11 years old because of this disease. Anyway, I have read through

> > some of your stories and am glad to hear that there are others in

> > the same condition as me.

> >

> > Thank you!

> > CHARLENE

> >

Report post · April 4, 2004

G,day

What part of australia are you from? I have never heard of " silver

colloquil " and my son has had numerous operations for removal of c-toma. We

live in Central Queensland.

deb

New member

> Hi team,

>

> My name is , I live in Australia. Have just had my 5th

> cholesteatoma removed 1 month ago. Is there anyone else who has had

> numerous removals, if so, I would appreciate hearing from you.

>

> BTW, does anyone have any details on the effectiveness of 'silver

> colloquil' in preventing these c-tomas?

>

> Regards

>

Report post · April 4, 2004

Hi

I think you're referring to 'colloidal silver'. I came across mention of this for the first time only recently where someone on another site said they were given this treatment for ear infection back in the 1930s. I'm sure a few people on this site have metnioned another silver product - silver nitrate - before. It seems like colloidal silver was used as a an anti-infection treatment before antibiotics like penicillin were developped. Ctoma is made worse by infection but isn't actually caused by a virus or bacteria so one wouldn't assume it could be prevented. My own feeling is that anyone who has had a serious ear disease like ctoma, should really ask a doctor's advice before putting any chemical into their ears.

I did look at couple of web pages regarding colloidal silver. Most seem to be commercial 'alternative' sites. But I saw these: one basically says the stuff is useless and risky and the other is more favourable.

http://www.quackwatch.org/01QuackeryRelatedTopics/PhonyAds/silverad.html

http://smart-drugs.net/ias-silverSouth.htm

Phil

BTW, does anyone have any details on the effectiveness of 'silver colloquil' in preventing these c-tomas?

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Report post · April 6, 2004

,

While I haven't had any experience with the doctors on your list (I'm in

Virginia), my daughter was 4 when she was first diagnosed with

congenital ctoma. I also had congenital ctoma as a kid, but mine wasn't

found until I was 8, and the damage was done (I'm hearing impaired on

one side, and wear a hearing aid now).

I believe that the best option available to you is the one that leaves

as many avenues to normal hearing open as possible. CWD pretty much

means an end to normal ear function, if I understand it properly. My

daughter just completed her second ctoma removal surgery in March (first

one was July last year), and had an exploratory tympanoplasty (performed

via the ear canal, not by behind-the-ear incision) both times. She

still has a very, very good shot at normal or near-normal hearing when

all this is over, assuming no further ctoma recurrence.

Speaking from experience myself, it's a hard choice between one radical

surgery that should (but not always will) put an end to ctoma

completely, or having multiple surgeries that leave open the chance at

normal hearing. My parents choose the multiple-surgery route, but my

hearing was a goner pretty much from the start, and most of those

multiple surgeries were for reconstruction, not ctoma removal (I was

lucky - I had no recurrence).

Given that I have hearing loss, and knowing how that has played out in

my life, I'd prefer to give my daughter the best possible shot at normal

hearing that I can - within limits. If she has a third ctoma

recurrence, I've got some soul-searching to do before I decide between a

third tympanoplasy and a mastoidectomy. Watching how she has bounced

back from both of her previous operations, I'd still be inclined to give

it a third try, all things being equal - I am fortunate enough to have

the financial means and good insurance to make that choice.

Of course, all of this depends on the extent of the ctoma in your

daughter's case, and on your own situation. Given the choice between

hope and no hope for normal hearing, however, I'd go with hope at this

point.

Best of luck to you and your daughter.

-Jeff.

New Member

Hello,

My name is . I have a 5 year old girl that has been diagnosed

with congenital cholesteatoma. I have done quite a bit of research

on the subject and have been to see a number of different

otologists. I live in the New York City area and have been to see

the following doctors:

Dr. Jed Kwartler Ear Specialty Group Springfield NJ

Dr. Potsic Children's Hospital of Philadelphia

Dr. Simon Parisier Manhattan Eye Ear Nose & Throat Hospital

One of these doctors is a pediatric ENT, the other two are

otologists. The pediatric ENT appears to prefer the staged approach

with CWU. One of the otologits was leaning towards CWD. Dr. Parisier

believes in an individualized approach to the operation. That means

deciding CWU/CWD based on the individual situation minimizing the

percentage of reoccurrences from the beginning. Has far as I can

tell, it appears that Dr. Parisier is my best bet. He has written

many papers on the subject. I have read a few and what he says makes

sense to me. I think I would prefer a CWD (if necessary) rather than

CWU multiple times. I understand, of course, that CWD does not

guarantee that there will be no reoccurrences.

Has anyone had any experience with him or the other two doctors? Any

information would be greatly appreciated.

Many Regards

Report post · April 7, 2004

In most case's reconstruction is a very real

possiblity when it comes to the CWD, that's why it is

the most popular choice with Otoloigist's. Granted

there will be some case's where reconstruction is not

possible, but would you rather have a go the route by

having the CWD which in most case's ends c-toma's

return. Think of all those who have been in this

group that have had more then 5 op's for c-toma and is

still comming back. I had two removal attempts before

my CWD 24 plus years ago, I'm glad that the CWD worked

out the way it did as I would not want to go through

endless op's in the hope of getting ride if this stuff

when the CWD will likely take care of it. What's more

human? Endless op's or the real possiblity of one and

done with the CWD?

tom hansen

--- Jeff <jlcarter@...> wrote:

> ,

>

> While I haven't had any experience with the doctors

> on your list (I'm in

> Virginia), my daughter was 4 when she was first

> diagnosed with

> congenital ctoma. I also had congenital ctoma as a

> kid, but mine wasn't

> found until I was 8, and the damage was done (I'm

> hearing impaired on

> one side, and wear a hearing aid now).

>

> I believe that the best option available to you is

> the one that leaves

> as many avenues to normal hearing open as possible.

> CWD pretty much

> means an end to normal ear function, if I understand

> it properly. My

> daughter just completed her second ctoma removal

> surgery in March (first

> one was July last year), and had an exploratory

> tympanoplasty (performed

> via the ear canal, not by behind-the-ear incision)

> both times. She

> still has a very, very good shot at normal or

> near-normal hearing when

> all this is over, assuming no further ctoma

> recurrence.

>

> Speaking from experience myself, it's a hard choice

> between one radical

> surgery that should (but not always will) put an end

> to ctoma

> completely, or having multiple surgeries that leave

> open the chance at

> normal hearing. My parents choose the

> multiple-surgery route, but my

> hearing was a goner pretty much from the start, and

> most of those

> multiple surgeries were for reconstruction, not

> ctoma removal (I was

> lucky - I had no recurrence).

>

> Given that I have hearing loss, and knowing how that

> has played out in

> my life, I'd prefer to give my daughter the best

> possible shot at normal

> hearing that I can - within limits. If she has a

> third ctoma

> recurrence, I've got some soul-searching to do

> before I decide between a

> third tympanoplasy and a mastoidectomy. Watching

> how she has bounced

> back from both of her previous operations, I'd still

> be inclined to give

> it a third try, all things being equal - I am

> fortunate enough to have

> the financial means and good insurance to make that

> choice.

>

> Of course, all of this depends on the extent of the

> ctoma in your

> daughter's case, and on your own situation. Given

> the choice between

> hope and no hope for normal hearing, however, I'd go

> with hope at this

> point.

>

> Best of luck to you and your daughter.

>

> -Jeff.

>

> New Member

>

> Hello,

>

> My name is . I have a 5 year old girl that has

> been diagnosed

> with congenital cholesteatoma. I have done quite a

> bit of research

> on the subject and have been to see a number of

> different

> otologists. I live in the New York City area and

> have been to see

> the following doctors:

>

> Dr. Jed Kwartler Ear Specialty Group Springfield NJ

>

> Dr. Potsic Children's Hospital of

> Philadelphia

>

> Dr. Simon Parisier Manhattan Eye Ear Nose & Throat

> Hospital

>

> One of these doctors is a pediatric ENT, the other

> two are

> otologists. The pediatric ENT appears to prefer the

> staged approach

> with CWU. One of the otologits was leaning towards

> CWD. Dr. Parisier

> believes in an individualized approach to the

> operation. That means

> deciding CWU/CWD based on the individual situation

> minimizing the

> percentage of reoccurrences from the beginning. Has

> far as I can

> tell, it appears that Dr. Parisier is my best bet.

> He has written

> many papers on the subject. I have read a few and

> what he says makes

> sense to me. I think I would prefer a CWD (if

> necessary) rather than

> CWU multiple times. I understand, of course, that

> CWD does not

> guarantee that there will be no reoccurrences.

>

> Has anyone had any experience with him or the other

> two doctors? Any

> information would be greatly appreciated.

>

> Many Regards

>

Report post · April 26, 2004

Hi,

Guess I'm kind of in the same boat as your son.

I started having hearing problems when i was 36. Over the next two

years I went from having near perfect hearing to having a profound

hearing loss in the left ear and a severe-profound hearing loss in

the right. My hearing fluctuated wildly, but always trended down. I

had great hearing aids, but there's only so much they could do. I

also learned to speechread and sign.

Several things happened (sick Mom, sudden death of my Father, other

things)that really drove home the difficulties of dealing with a

hearing loss when you're totally surrounded with hearing people.

When I was approved for my CI I still had about 50% speech

comprehension in my right ear if I used hearing aids and conditions

were perfect.

I was implanted in my left ear and the implant was activated about

4 months ago. Since then, I've used the HA at times but not full

time like before. The sound quality I get from my CI is MUCH better

than what I can get with the hearing aid.

I can see some advantages to using the HA and CI combination, and I

know several CI users who do. Guess it depends on on the individual

and how well they work together.

I sincerely hope things work out well for your son. Cochlear

implant or not, with your love and encouragement he'll do great!

-Jeff

Clarion 90K & Auria & Hi-Res 12/03 + Claro 311 that occassionally

gets used.

> Hi Everyone,

> I'm new to the group and I'm the mother of an 8-year-old boy with

a progressing hearing loss. He is fully verbal and a great hearing

aid user. Unfortunately, recently his hearing deteriorated

significantly. Now he has severe to profound loss in one ear and

moderate to profound loss in the other ear. Although he can still

benefit from his aid, his hearing fluctuates severely. Because of

the fluctuations he was evaluated for receiving the cochlear implant

and was finally considered a candidate. He will have the surgery

next month. The CI team told us that he may eventually use both CI

and HA. Is there anyone in this group who had been implanted post

lingually and using both CI and HA? If yes, could you please give me

more info on your personal experience?

> Thank You,

> Bahareh Vali

>

Report post · April 26, 2004

Hi Jeff,

Thanks a lot for your reply. I'm so happy that you are getting much benefit from

your implant. I have a few more questions for you if you don't mind!

Do you know the reason of your hearing loss? Did the CT scan show malformation

of the inner ear? (My son has Enlarged Vestibular Aqueducts and Mondini

dysplasia of the cochlea which results in fluctuating loss) How shocking was the

CI activation? Are the sounds that you hear now very different from what you

heard before? How long did it take for you to understand speech with your CI? At

what threshold can you now hear with your implant? How is your hearing in noisy

places as in restaurants? Do you enjoy music?

I really appreciate your reply.

Thanks,

Bahareh

spot652000 <masha@...> wrote: