Questions

April 23, 2007

> > > >

> > > > Hey I am getting ready to order my hcg and am going to get is

> > from

> > > the

> > > > anaboic-pharm does it come in powder form? By the pictures

it

> > looks

> > > > like it is already mixed. I am new here and am anxious to get

> > started

> > > > but would like to have contact with people that are also

doing

> > this.

> > > > Where also did you find the elotin tea none of the health

> stores

> > > carry

> > > > it and I was told that I had to order it off the internet.

> Thanks

> > > >

> > >

> >

>

April 23, 2007

edwards112,

thanks for the clarification about the teas. Another great

justification for this board. Many people working together.

Thanks a million,

Jodie

> > > > >

> > > > > Hey I am getting ready to order my hcg and am going to get

is

> > > from

> > > > the

> > > > > anaboic-pharm does it come in powder form? By the pictures

> it

> > > looks

> > > > > like it is already mixed. I am new here and am anxious to

get

> > > started

> > > > > but would like to have contact with people that are also

> doing

> > > this.

> > > > > Where also did you find the elotin tea none of the health

> > stores

> > > > carry

> > > > > it and I was told that I had to order it off the internet.

> > Thanks

> > > > >

> > > >

> > >

> >

>

April 28, 2007

Patty,

Before my revision surgery, I COULDN'T walk more than a block or so. I don't think walking harmed my back at all, in fact, I relished the exercise for many years. Now I can walk all I want! Until I recently purchased a recumbent stationary bike, walking was the only exercise I could do.

questions

Hi,

This is my first time to the site and I have some questions. I had my Harrington rods put in in 1979. I am now 43 years old and have daily back pain. Mine is not as severe as many of you and you're in my prayers. My curve was 67 degrees and I always thought that was pretty bad. Have any of you found that walking daily has helped in any way, or has it made your back worse?? I know that our backs are not like the "average" person, so I always wonder if I'm helping it or hurting it.

I also had a cervical laminectomy about 5 years ago, and breast cancer about 3 years ago. About 2 or 3 years ago, I worked at a home decor store. I was on a ladder, looking up to a high shelf at a lamp for a customer and when I went to lower my head back to its original position, it was very difficult. It was a strange sensation and I went to the emergency room. They didn't find anything out of the ordinary. After that my neck cracked a LOT and when I turned my head it felt like my vertebrae were slipping back into place like a puzzle. I went to therapy for a while and it is much better. After all of this happened, I read on a scoliosis website that this is very common, and people were saying not to look too far up or too far down! I wish I'd known that before!

Last week I saw my family doctor about my back pain. He did bloodwork specifically for rheumatoid arthritis, but I don't have the results back from that.

I wish you all well, and it's nice to know that I'm not alone in my daily struggles with pain and depression. Patty

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Autos.

April 28, 2007

Hi

Patty,

After about 10 years post-surgery

(original), I was no longer able to walk. A rheumatologist prescribed Flexoril

(a muscle relaxer) and gradually I was able to walk, even jog. But about 5

years later, I developed bursitis in my hips from walking/jogging and although cortisone

injections were very helpful, they themselves were very painful and only lasted

six months. So I stopped walking, which led to loss of muscle tone and stamina.

I had my revision in 2003 and,

unfortunately, continue to have difficulty walking. I understand that when a

person’s skeleton is moved around, it changes the biomechanics –

how bones, muscles, tendons, etc. fit and work together. I think Boachie pushed

my hips a little too far forward and my trunk isn’t in good alignment

with my hips and thighs.

When I walk I have terrible psoas (groin)

muscle pain that makes me have to shuffle after about 5 minutes of walking.

Then the muscles ease up – and they seize up again! I’m now taking

Flexoril again, stretching

(modified Pilates), and getting deep tissue massage, and hoping the situation

will improve.

I’m currently walking a little every

day and I think it’s important to do so – or any exercise –

to stretch out muscles and strengthen the ‘core’ (abdominal muscles

that support the spine), if at all possible. But it shouldn’t be a

pounding type of walking, and preferably on dirt rather than sidewalk or road.

It’s better to walk outside rather than on a treadmill because your steps

vary to accommodate the terrain outside and are less likely to lead to

repetitive stress.

But I think I’m one of the more

unusual post-revision patients in regard to having trouble walking. Many people

who post here are finally able to walk after revision and are really happy

about it.

I hope your test results come back

negative – no rheumatoid arthritis. Please write and tell us.

Best,

Andy

questions

Hi,

This is my first time to the site and I

have some questions. I had my Harrington rods put in in 1979. I am

now 43 years old and have daily back pain. Mine is not as severe as many

of you and you're in my prayers. My curve was 67 degrees and I always

thought that was pretty bad. Have any of you found that walking daily has

helped in any way, or has it made your back worse?? I know that our backs

are not like the " average " person, so I always wonder if I'm helping

it or hurting it.

I also had a cervical laminectomy about 5 years

ago, and breast cancer about 3 years ago. About 2 or 3 years ago, I

worked at a home decor store. I was on a ladder, looking up to a high

shelf at a lamp for a customer and when I went to lower my head back to its

original position, it was very difficult. It was a strange sensation and

I went to the emergency room. They didn't find anything out of the

ordinary. After that my neck cracked a LOT and when I turned my head it

felt like my vertebrae were slipping back into place like a puzzle. I

went to therapy for a while and it is much better. After all of this

happened, I read on a scoliosis website that this is very common, and people

were saying not to look too far up or too far down! I wish I'd known that

before!

Last week I saw my family doctor about my

back pain. He did bloodwork specifically for rheumatoid arthritis, but I

don't have the results back from that.

I wish you all well, and it's nice to

know that I'm not alone in my daily struggles with pain and

depression. Patty

Ahhh...imagining that irresistible " new car "

smell?

Check out new

cars at Autos.

April 29, 2007

Andy,

I am still relatively new to the site here, I've only been around

since last summer. When I hear about all of the problems you

continue to have after your revision surgery, it really saddens me.

You mentioned that you think your hips may have been pushed too far

forward in your revision. Is another surgery an option for you, to

try to re-align things a little better? Or perhaps you've decided

against that option? While I know that revision surgery doesn't

guarantee pain relief, etc etc, it just seems awful that you went

through all of it and you're still suffering so much.

>

> Hi Patty,

>

> After about 10 years post-surgery (original), I was no longer able

to walk.

> A rheumatologist prescribed Flexoril (a muscle relaxer) and

gradually I was

> able to walk, even jog. But about 5 years later, I developed

bursitis in my

> hips from walking/jogging and although cortisone injections were

very

> helpful, they themselves were very painful and only lasted six

months. So I

> stopped walking, which led to loss of muscle tone and stamina.

>

> I had my revision in 2003 and, unfortunately, continue to have

difficulty

> walking. I understand that when a person's skeleton is moved

around, it

> changes the biomechanics - how bones, muscles, tendons, etc. fit

and work

> together. I think Boachie pushed my hips a little too far forward

and my

> trunk isn't in good alignment with my hips and thighs.

>

> When I walk I have terrible psoas (groin) muscle pain that makes

me have to

> shuffle after about 5 minutes of walking. Then the muscles ease

up - and

> they seize up again! I'm now taking Flexoril again, stretching

(modified

> Pilates), and getting deep tissue massage, and hoping the

situation will

> improve.

>

> I'm currently walking a little every day and I think it's

important to do so

> - or any exercise - to stretch out muscles and strengthen

the 'core'

> (abdominal muscles that support the spine), if at all possible.

But it

May 3, 2007

Hi - I won't comment on your son's surgeries since I had a different sort of situation and don't want to give you any wrong info. But I have found that Mack's ear plugs, the kind that are opaque/clear and formable are the best ones for keeping water out. I have used them successfully for swimming, although you would still have to be extremely careful when removing them that water does not drip into the ear. I would think given his history that perhaps you want to consider no swimming for a while, until you are more sure that the cholestatoma is gone for good and the ear is dry and well-healed. I think that the further from surgery and the healthier the ear, the easier it can handle exposure to even minimal amounts of moisture. Just an idea. But try the Mack's - they worked very well for me. You could try them yourself in the shower and see what you think. Best regards, morrisonkt31 <morrisonkt31@...> wrote: Hello - I have just signed up with this group and I am new to this message group thing! My son is 4 and is getting ready to have his 3rd surgery for cholesteatoma. He had a mastoidectomy and tympanoplasty a year ago and 6 months after that it recurred and had to have it removed. He is being scheduled for surgery again to make sure it has not recurred. How often have you all had this recur and does anyone know of any good ear plugs for

swimming? He has some that we got from the ENT and they are good enough for a bath but I don't know that they will keep his ear totally dry when swimming. Thanks for any replies.

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Autos.

July 18, 2007

Your husband should be typed prior to any decision with regard to treatment.

If this is not a recent infection, it could be more active right now due to

some

other stress that he may be experiencing.

Wait and see what the biopsy has to reveal before you make any treatment

choices. And be sure that you fully understand the down side of them.

There are many folks who now have other disabilities as a result of the

treatments.

Be careful where you get your information...doctors and websites that are

sponsored

by the makers of these drugs, will lead you to believe that you have no other

options.

Their interest in us as patients, is very much a financial one. Treatments

are very

expensive, and can last nearly a year, depending on how one tolerates the

meds.

Take care!

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

July 23, 2007

>

> My 9 year old has had 2 canal wall up surgeries. One at age 6 and the

> other at age 7. Both time they removed tissue about the size of the

> doctors thumb. Now it has been 2 years since surgery and the

> discharge started up again so we got a CAT scan and it looks like we

> may need surgery again (I haven't spoke with the doctor yet, but I

> had the results faxed to my office and from reading the results it

> appears it has regrown).

>

> I have some questions that I hope someone on here knows:

>

> If a surgery removes all the cholesteatoma tissue can it regrow, or

> does it only regrow if there was some tissue missed?

>

> Can water in the ear actually make a cholesteatoma grow?

>

> Has anyone on here had more then 2 surgeries and continued to get

> canal wall up? Is canal wall down a better option if the

> cholesteatoma has come back?

>

> How do you know if it has regrown after surgery? Do you get routine

> CAT scans every year or two? Do you just wait and as long as there is

> no discharge you are probably fine?

>

> Thanks for any help on answering these questions.

>

> Warmly,

>

Hello

I have had just one surgery last year and my current CAT scan shows

that Ctoma has come back.Of course the health system of Greece is a

bit strange so I can't tell you if or when I will be operated again.

That is why I read every article on the Net so as to find out more

about what I have.So I think I can answer your questions though I am a

patient and not a doctor.

1. The cholesteatoma usually recurs when some of the dead tissues are

missed.But this is not the only explanation for its

recurrence.Sometimes the doctors just can't remove it all,it has to do

with its size.If it is really big they have to remove it in more than

one stage.So you'd better ask your doctor about it,in the end he knows

better what he has done in your son's head.

2.Water itself doesn't turn into Ctoma but it can cause ear infections

.. From the articles I have read so far,I understand that there are two

types of Ctoma.The congenital Ctoma and the acquired Ctoma.The first

type is something you have at birth,while the other one is something

you acquire after having many ear infections that in fact are never

entirely healed.So water causes ear infections and many ear infections

potentially can grow a Ctoma.At least that is what I understand when I

read the articles about Ctoma,I repeat I am not a doctor.

3.Regarding canal wall up and down operations,the articles say that

the latter form of operation is safer for avoiding the recurrence but

on the other hand it is less successful for restoring the hearing

while the first one is the better method for restoring the hearing of

the patient and worse for the recurrence of the disease.The doctors

opt the more suitable method for their patient depending on what

extent is the damage of the Ctoma in the patient's ear.So once again

your doctor has the info you need.Unfortunately I can't tell you what

kind of operation I have because my doctor hasn't informed me....

remember I live in Greece!!!!

4. How do you know if Ctoma is back?Well there are symptoms,at least I

have symptoms.I am talking about that smelly green thing coming out of

my ear and the antibiotics don't seem they can stop it,about the pain

I feel right at the back of my ear,about the fact that I don't have

the balance I used to have so I fall on the furniture,walls etc and

about my sleepiness,I really sleep a lot when I don't suffer from

earaches.And of course,the CAT scan....it shows its coming back!!!It

is the best proof you have,the results of a CAT scan is the real proof

that Ctoma is back.

I once again tell you that a patient knows what is happening in their

heads and it depends on the health system of a country if you just

wait the worse to happen.Sorry if I am disappointed but the problem I

face is that doctors don't help me get rid of it once and for all.I

don't want to discourage you so I'd better don't tell you my story in

details.Focus on your child .Read more about it and go to your

doctor and demand from him to inform you thoroughly,that's the best

you can do for your son.

As a patient of Ctoma I wish the best for your son.

love

johndojoedo

July 23, 2007

,

I recently underwent a canal wall down (CWD) procedure in April, and am happy to say at this point I am rid of the c-toma. In discussing my options of either CWD or CWU procedures, I was educated by my ENT, and the Otologist that performed the surgery, the pros and cons of both based on my activity level. I am in my mid 30s, fairly active with having a 3 yr old that loves to play in the pool. I too am always around water in the summer time. With the CWD, there are more restrictions because the canal wall is broken down partially, and, or completely removed. With CWU, reoccurence is higher than CWD, therefore possibly having more operations later on. With CWD, you are forbidden, by most doctors, to get water in your ear. I wear standard over the counter ear plugs to avoid the occaisional splashing while in the pool with my

daughter. I DO NOT go under the water, if water does get in, I simply turn my head so that water can clear out, and then use a perscribed solution to assist in "quick dry" of the inner ear if there is still water left behind.

I hope to remain c-toma free and will answer other questions you, or others, may have.

I will also point out, there are a few doctors that are trying a new technique for CWD patients for partial reconstruction of the canal wall. I've heard it be called a "flap".

Nate....

Questions

My 9 year old has had 2 canal wall up surgeries. One at age 6 and the other at age 7. Both time they removed tissue about the size of the doctors thumb. Now it has been 2 years since surgery and the discharge started up again so we got a CAT scan and it looks like we may need surgery again (I haven't spoke with the doctor yet, but I had the results faxed to my office and from reading the results it appears it has regrown).I have some questions that I hope someone on here knows:If a surgery removes all the cholesteatoma tissue can it regrow, or does it only regrow if there was some tissue missed?Can water in the ear actually make a cholesteatoma grow?Has anyone on here had more then 2 surgeries and continued to get canal wall up? Is canal wall down a better option if the cholesteatoma has come back?How do you know if it has regrown after surgery? Do you get routine CAT

scans every year or two? Do you just wait and as long as there is no discharge you are probably fine?Thanks for any help on answering these questions.Warmly,

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July 23, 2007

Hi

Most of it's been said but I'll put my bit in too

If a surgery removes all the cholesteatoma tissue can it regrow, or does it only regrow if there was some tissue missed?

Most recurrence is due to ctoma cells which are missed during the previous surgery. They may be hidden away somewhere and hard ot find. This happens more often with Canal Wall Up because limits the surgeons access to the middle ear space. The other factor that can contribute to regrowth is that same conditions that caused the first ctoma may still be in place and the process could simply start over again. Again this is more likely with more conservative surgery.

Can water in the ear actually make a cholesteatoma grow?

Water carries bacteria which can lead to ear infection. Ear infection along with a few other factors can produce the right environment for the onset of ctoma. Ctomas also secrete enzymes which slowly erode the bone structure in and around the ear. Infected ctomas are more vigorously destructive.

Has anyone on here had more then 2 surgeries and continued to get canal wall up? Is canal wall down a better option if the cholesteatoma has come back?

I've only had the CDW surgeries but I think in general most doctors will opt for the least invasive technique if that is feasible. There has to be a limit though especially since we sometimes hear from people who have six or dozen surgeries year in year out. Your son is young so there is still a chance, providing the destruction is not too great, that his ears will normalize as he grows older. If the recurrences are still going on in a few years time then it probably would be right to try another method. It's something you should discuss with the doctor.

How do you know if it has regrown after surgery? Do you get routine CAT scans every year or two? Do you just wait and as long as there is no discharge you are probably fine?Theoretically, once you have had ctoma, you would always be considered at risk (even a mild one) of the disease returning and therefore remain an occasional ENT patient for the rest of your life. Usually, if there is no routine cleaning needed (something that's necessary with CWD) then you should only need to be monitored every year or two. As johndojoedo said you are usually aware if something is going on with your own ears and a competent ENT would always suspect possible recurrence.

Phil

July 24, 2007

>

> Hello,

>

> I had a CWD back on my left ear back in July. I recently had a CAT

> scan because my Dr. thinks I have ctoma in my right ear as well. I

> picked up my CAT scan tonight (I don't see the Dr. until Dec 28th)

> and this is what my report says: The external auditory canal is

> patent. The scutum is sharp. Again noted is soft tissue with

> Prussak's space and surrounding the ossicles (sounds like

> cholesteatoma to me : ( There is no evidence of ossicular erosion.

> The tegmen tympani is intact. The conclea and vestibule are normal

> in appearence. The lateral wall of the semicircular canal is covered

> by bone. There has been mild progression of opacification of

> numerous right mastoid air cells with surrounding sclerosis. This is

> consistent with a recurrent imflammatory process.

>

> While I realize that none of you are Dr.'s are there any thoughts??

> I don't even understand half of what I just typed. I need to

> mentally prepare myself for my appt on Dec 28th.

>

> Oh and for my left ear (the CWD ear) it says: There is a small

> amount of soft tissue within the mesotympanum just inferior to the

> lateral semicircular canal. I just had my surgery in July. Surely

> the Ctoma has not come back????

>

> Thanks for your time. I really appreciate it : )

>

Hi

Well I cannot understand a thing when reading your scan results BUT

there are some things you can do if you want to understand their

meanings.First thing you can do is to compare these results to the

previous ones....I mean since you've been operated for Ctoma you must

have other Cat scans in your hands,haven't you?Read all of them very

carefully and if you find the same terms in your new Cat scan then you

will be able to make a guess.

But I strongly believe you should reschedule your appointment with the

ENT .I mean ,he ordered the CAT scan and he is going to see it on 28th

of December????Sorry but I can't understand it....what the reason for

you to hurry doing it then?

Anyway,that is my opinion....reschedule your appt and find out the

truth as soon as possible,it's the best you can do and don't speculate

things that will make you feel bad.Have a professional opinion because

as you said we all in here are not doctors.

Wish you the best dear

dojoedo

July 24, 2007

Wow, I feel so uneducated on the CWU and CWD. My now 5.4 yo daughter

had ctoma removed last june (2006). I have no idea which procedure

was done, I was not educated on that part of it. Her situation is

unique as she was born deaf and has a cochlear implant in that ear.

the cochlear implant was removed and ctoma removed and hearing bones

and ear drum removed as well as the ear canal being " rebuilt " ! What

is your opinion on which procedure they did on her knowing this

information. Her surgery was 9 hours total due to the cochlear

implant situation. They also put a cochlear implant in the other ear

as well. As far as checking for recurrence, she has already had 2 CT

scans and is scheduled for another one in October, so her doctor is

checking every six months. So far so " Clean " !

I have yet to meet another ctoma patient/parent on this list that

has a cochlear implant.

>

> Hi

>

> Most of it's been said but I'll put my bit in too

>

> If a surgery removes all the cholesteatoma tissue can it regrow,

or

> does it only regrow if there was some tissue missed?

>

> Most recurrence is due to ctoma cells which are missed during the

previous surgery. They may be hidden away somewhere and hard ot

find. This happens more often with Canal Wall Up because limits the

surgeons access to the middle ear space. The other factor that can

contribute to regrowth is that same conditions that caused the first

ctoma may still be in place and the process could simply start over

again. Again this is more likely with more conservative surgery.

>

> Can water in the ear actually make a cholesteatoma grow?

>

> Water carries bacteria which can lead to ear infection. Ear

infection along with a few other factors can produce the right

environment for the onset of ctoma. Ctomas also secrete enzymes

which slowly erode the bone structure in and around the ear.

Infected ctomas are more vigorously destructive.

>

> Has anyone on here had more then 2 surgeries and continued to get

> canal wall up? Is canal wall down a better option if the

> cholesteatoma has come back?

>

> I've only had the CDW surgeries but I think in general most

doctors will opt for the least invasive technique if that is

feasible. There has to be a limit though especially since we

sometimes hear from people who have six or dozen surgeries year in

year out. Your son is young so there is still a chance, providing

the destruction is not too great, that his ears will normalize as he

grows older. If the recurrences are still going on in a few years

time then it probably would be right to try another method. It's

something you should discuss with the doctor.

>

> How do you know if it has regrown after surgery? Do you get

routine

> CAT scans every year or two? Do you just wait and as long as there

is

> no discharge you are probably fine?

>

> Theoretically, once you have had ctoma, you would always be

considered at risk (even a mild one) of the disease returning and

therefore remain an occasional ENT patient for the rest of your

life. Usually, if there is no routine cleaning needed (something

that's necessary with CWD) then you should only need to be monitored

every year or two. As johndojoedo said you are usually aware if

something is going on with your own ears and a competent ENT would

always suspect possible recurrence.

>

> Phil

>

July 24, 2007

Sounds more like an advance CWD procedure, with the advance part being the wall was reconstructed after being removed. My $.02.

Re: Questions

Wow, I feel so uneducated on the CWU and CWD. My now 5.4 yo daughter had ctoma removed last june (2006). I have no idea which procedure was done, I was not educated on that part of it. Her situation is unique as she was born deaf and has a cochlear implant in that ear. the cochlear implant was removed and ctoma removed and hearing bones and ear drum removed as well as the ear canal being "rebuilt"! What is your opinion on which procedure they did on her knowing this information. Her surgery was 9 hours total due to the cochlear implant situation. They also put a cochlear implant in the other ear as well. As far as checking for recurrence, she has already had 2 CT scans and is scheduled for another one in October, so her doctor is checking every six months. So far so "Clean"!I have yet to meet another ctoma patient/parent on this list that has a cochlear implant.>> Hi > > Most of it's been said but I'll put my bit in too> > If a surgery removes all the cholesteatoma tissue can it regrow, or > does it only regrow if there was some tissue missed?> > Most recurrence is due to ctoma cells which are missed during the previous surgery. They may be hidden away somewhere and hard ot find. This happens more often with Canal Wall Up because limits the surgeons access to the middle ear space. The other factor that can contribute to regrowth is that same conditions that caused the first ctoma may still be in place and the process could simply start over again. Again this is more likely with more conservative surgery.> > Can water in the ear actually make a

cholesteatoma grow?> > Water carries bacteria which can lead to ear infection. Ear infection along with a few other factors can produce the right environment for the onset of ctoma. Ctomas also secrete enzymes which slowly erode the bone structure in and around the ear. Infected ctomas are more vigorously destructive.> > > Has anyone on here had more then 2 surgeries and continued to get > canal wall up? Is canal wall down a better option if the > cholesteatoma has come back?> > I've only had the CDW surgeries but I think in general most doctors will opt for the least invasive technique if that is feasible. There has to be a limit though especially since we sometimes hear from people who have six or dozen surgeries year in year out. Your son is young so there is still a chance, providing the destruction is not too great, that his ears will normalize as he

grows older. If the recurrences are still going on in a few years time then it probably would be right to try another method. It's something you should discuss with the doctor. > > > How do you know if it has regrown after surgery? Do you get routine > CAT scans every year or two? Do you just wait and as long as there is > no discharge you are probably fine?> > Theoretically, once you have had ctoma, you would always be considered at risk (even a mild one) of the disease returning and therefore remain an occasional ENT patient for the rest of your life. Usually, if there is no routine cleaning needed (something that's necessary with CWD) then you should only need to be monitored every year or two. As johndojoedo said you are usually aware if something is going on with your own ears and a competent ENT would always suspect possible recurrence.>

> Phil>

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Games.

July 25, 2007

Just a question out of curiosity... Why did they rebuild your

daughter's ear canal? Was it for cosmetic purposes? Cochlear

implants bypass the outer and middle ear to directly stimulate the

cochlea, so I wouldn't think she would need anything else

reconstructed unless it was to improve appearance. Sounds pretty

smart to implant the other ear, in case she has future c-toma

issues. You certainly do have a unique situation- how lucky that

you found the c-toma!!! My son's only symptom was slight hearing

loss.

> >

> > Hi

> >

> > Most of it's been said but I'll put my bit in too

> >

> > If a surgery removes all the cholesteatoma tissue can it regrow,

> or

> > does it only regrow if there was some tissue missed?

> >

> > Most recurrence is due to ctoma cells which are missed during

the

> previous surgery. They may be hidden away somewhere and hard ot

> find. This happens more often with Canal Wall Up because limits

the

> surgeons access to the middle ear space. The other factor that can

> contribute to regrowth is that same conditions that caused the

first

> ctoma may still be in place and the process could simply start

over

> again. Again this is more likely with more conservative surgery.

> >

> > Can water in the ear actually make a cholesteatoma grow?

> >

> > Water carries bacteria which can lead to ear infection. Ear

> infection along with a few other factors can produce the right

> environment for the onset of ctoma. Ctomas also secrete enzymes

> which slowly erode the bone structure in and around the ear.

> Infected ctomas are more vigorously destructive.

> >

> > Has anyone on here had more then 2 surgeries and continued to

get

> > canal wall up? Is canal wall down a better option if the

> > cholesteatoma has come back?

> >

> > I've only had the CDW surgeries but I think in general most

> doctors will opt for the least invasive technique if that is

> feasible. There has to be a limit though especially since we

> sometimes hear from people who have six or dozen surgeries year in

> year out. Your son is young so there is still a chance, providing

> the destruction is not too great, that his ears will normalize as

he

> grows older. If the recurrences are still going on in a few years

> time then it probably would be right to try another method. It's

> something you should discuss with the doctor.

> >

> > How do you know if it has regrown after surgery? Do you get

> routine

> > CAT scans every year or two? Do you just wait and as long as

there

> is

> > no discharge you are probably fine?

> >

> > Theoretically, once you have had ctoma, you would always be

> considered at risk (even a mild one) of the disease returning and

> therefore remain an occasional ENT patient for the rest of your

> life. Usually, if there is no routine cleaning needed (something

> that's necessary with CWD) then you should only need to be

monitored

> every year or two. As johndojoedo said you are usually aware if

> something is going on with your own ears and a competent ENT would

> always suspect possible recurrence.

> >

> > Phil

> >

>

July 25, 2007

The ctoma had eroded so much bone, resulting in the electrode array

literally coming out through the ear canal. It was a large ctoma. Her

symptom was constant drainage out of the area that the electode array

had worked its way out. Foul smelling for about a month, when

antibiotics didn't help, they put her under to get a better look and

found the electrode array " hanging out " ! It was a horrible experience

for her (and me)! I worry so much - but I am thankful for a man on

this list that said to me " don't worry about what may happen " I keep

that in my head all the time.

> > >

> > > Hi

> > >

> > > Most of it's been said but I'll put my bit in too

> > >

> > > If a surgery removes all the cholesteatoma tissue can it

regrow,

> > or

> > > does it only regrow if there was some tissue missed?

> > >

> > > Most recurrence is due to ctoma cells which are missed during

> the

> > previous surgery. They may be hidden away somewhere and hard ot

> > find. This happens more often with Canal Wall Up because limits

> the

> > surgeons access to the middle ear space. The other factor that

can

> > contribute to regrowth is that same conditions that caused the

> first

> > ctoma may still be in place and the process could simply start

> over

> > again. Again this is more likely with more conservative surgery.

> > >

> > > Can water in the ear actually make a cholesteatoma grow?

> > >

> > > Water carries bacteria which can lead to ear infection. Ear

> > infection along with a few other factors can produce the right

> > environment for the onset of ctoma. Ctomas also secrete enzymes

> > which slowly erode the bone structure in and around the ear.

> > Infected ctomas are more vigorously destructive.

> > >

> > > Has anyone on here had more then 2 surgeries and continued to

> get

> > > canal wall up? Is canal wall down a better option if the

> > > cholesteatoma has come back?

> > >

> > > I've only had the CDW surgeries but I think in general most

> > doctors will opt for the least invasive technique if that is

> > feasible. There has to be a limit though especially since we

> > sometimes hear from people who have six or dozen surgeries year

in

> > year out. Your son is young so there is still a chance, providing

> > the destruction is not too great, that his ears will normalize as

> he

> > grows older. If the recurrences are still going on in a few years

> > time then it probably would be right to try another method. It's

> > something you should discuss with the doctor.

> > >

> > > How do you know if it has regrown after surgery? Do you get

> > routine

> > > CAT scans every year or two? Do you just wait and as long as

> there

> > is

> > > no discharge you are probably fine?

> > >

> > > Theoretically, once you have had ctoma, you would always be

> > considered at risk (even a mild one) of the disease returning and

> > therefore remain an occasional ENT patient for the rest of your

> > life. Usually, if there is no routine cleaning needed (something

> > that's necessary with CWD) then you should only need to be

> monitored

> > every year or two. As johndojoedo said you are usually aware if

> > something is going on with your own ears and a competent ENT

would

> > always suspect possible recurrence.

> > >

> > > Phil

> > >

> >

>

August 6, 2007

<b>Has anyone on here had more then 2 surgeries and continued to get

canal wall up? Is canal wall down a better option if the

cholesteatoma has come back?</b>

I've had three CWU procedures done - my last included (which was for

prosthetics last friday). my doc told me that there are a lot of

factors they weigh when deciding which to do. in my case, if i have

another reoccurance he'll do a CWD instead, because of my age (i'm

22), the agressiveness of my past c-tomas, and the likelihood i

could have more problems.

The nice thing about CWU is that there's a better chance of saving

the hearing - with the CWD its harder to save it because of how the

canal conducts sound or something (i'm no expert, this is just what

my otologist told me at my pre-op appt in June). The downside is

that its easier for the surgeon to miss the roots of the c-toma.

Your son's doc will weigh a lot of things, when/if another surgery

is required. He want to make sure your son will have a safe, dry

ear - and he wants to do that without having your son going going

under the knife every few years. the CWD would allow him to remove c-

toma tissue during an office visit.

>

> My 9 year old has had 2 canal wall up surgeries. One at age 6 and

the

> other at age 7. Both time they removed tissue about the size of

the

> doctors thumb. Now it has been 2 years since surgery and the

> discharge started up again so we got a CAT scan and it looks like

we

> may need surgery again (I haven't spoke with the doctor yet, but

I

> had the results faxed to my office and from reading the results

it

> appears it has regrown).

>

> I have some questions that I hope someone on here knows:

>

> If a surgery removes all the cholesteatoma tissue can it regrow,

or

> does it only regrow if there was some tissue missed?

>

> Can water in the ear actually make a cholesteatoma grow?

>

> Has anyone on here had more then 2 surgeries and continued to get

> canal wall up? Is canal wall down a better option if the

> cholesteatoma has come back?

>

> How do you know if it has regrown after surgery? Do you get

routine

> CAT scans every year or two? Do you just wait and as long as there

is

> no discharge you are probably fine?

>

> Thanks for any help on answering these questions.

>

> Warmly,

>

August 8, 2007

Try surgeryloans.com thats how I got my money or just surf the web for medical loanscrazey4catz74@... wrote: I am new. I havent had surgery yet, but have many questions... Can someone go with you? I dont wanna be alone.. Also, did any of you have to finance the surgery..I dont have 8000. How long was it until you were back to normal activities. I would have to fly from texas to california I think to get there,

so where is the best place to get cheap tickets? thanks yall! Genia EverettPeke Rescue We can judge the heart of a man by his treatment of animals.--Immanuel Kent--Please don't breed or buy while shelter pets DIE!OPT TO ADOPT!!!! Get a sneak peek of the all-new AOL.com.

Choose the right car based on your needs. Check out Autos new Car Finder tool.

August 8, 2007

Yes, you can have someone with you. My friend went with me and stayed with me at the hotel the night before and then at the hospital the next two nights. The staff treated her just as nicely as they did me and when the doctors came in they talked to her too. I did not finance my surgery through a finance company but I had just refinanced my house and had some extra cash from that. I just had my surgery 5 days ago and I am pretty much back to doing everything I did before. I am still careful about lifting things (nothing over ten pounds) but I have been walking in the evenings and pushing my grandaughter in her stroller. I am still pretty tired, which is to be expected after anesthesia. The best way to find cheap tickets is to just google "cheap airline tickets." Check them all out, they do vary a lot. One site I use often is hotwire.com, but

they are not always the cheapest, so be sure to check other places too. Good luck and keep asking questions. Kristicrazey4catz74@... wrote: I am new. I havent had surgery yet, but have many questions... Can someone go with you? I dont wanna be alone.. Also, did any of you have to finance the surgery..I dont have 8000. How long was it until you were back

to normal activities. I would have to fly from texas to california I think to get there, so where is the best place to get cheap tickets? thanks yall! Genia EverettPeke Rescue We can judge the heart of a man by his treatment of animals.--Immanuel Kent--Please don't breed or buy while shelter pets DIE!OPT TO ADOPT!!!! Get a sneak peek of the all-new AOL.com.

Shape in your own image. Join our Network Research Panel today!

August 8, 2007

I financed my surgery through Medicredit, one of the companies listed on Dr. A's site. I used some of my flex medical money through my office but financed most of it. Yes, you can bring someone w/you. Talk to Nina and she will make the arrangements for you and a friend or family member. I had surgery on a Friday and back to work on Wednesday, by Tuesday I felt fine. I bought my tickets directly through the airline, they had the best price of all I looked at.Keep asking questions and good luck! Cyrena www.mylapbandjourney.com (240) 230/168/145 dob: 1/19/07 questions I am new. I havent had surgery yet, but have many questions... Can someone go with you? I dont wanna be alone.. Also, did any of you have to finance the surgery..I dont have 8000. How long was it until you were back to normal

activities. I would have to fly from texas to california I think to get there, so where is the best place to get cheap tickets? thanks yall! Genia EverettPeke Rescue We can judge the heart of a man by his treatment of animals.--Immanuel Kent--Please don't breed or buy while shelter pets DIE!OPT TO ADOPT!!!!Get a sneak peek of the all-new AOL.com.

August 9, 2007

Thanks for all the help so far.

I have noticed that a lot of you say to get a fill within the first 2 months.

so, it would probably be smart to go ahead and get plane tickets for the second trip early also so I get a better deal huh?

Cause I have to go back to him correct?

I live in Texas, by the way in case someone knows of a dr here that will fill someones elses band...

Genia EverettPeke Rescue

We can judge the heart of a man by his treatment of animals.--Immanuel Kent--Please don't breed or buy while shelter pets DIE!OPT TO ADOPT!!!!Get a sneak peek of the all-new AOL.com.

August 9, 2007

Genia, you can also get some information from Nina, she is Dr. Aceves coordinator. She can tell you which companies they deal with.terrina bell <terrinabell@...> wrote: Try surgeryloans.com thats how I got my money or just surf the web for medical loanscrazey4catz74aol wrote: I am new. I havent

had surgery yet, but have many questions... Can someone go with you? I dont wanna be alone.. Also, did any of you have to finance the surgery..I dont have 8000. How long was it until you were back to normal activities. I would have to fly from texas to california I think to get there, so where is the best place to get cheap tickets? thanks yall! Genia EverettPeke Rescue We can judge the heart of a man by his treatment of animals.--Immanuel Kent--Please don't

breed or buy while shelter pets DIE!OPT TO ADOPT!!!! Get a sneak peek of the all-new AOL.com. Choose the right car based on your needs. Check out Autos new Car

Finder tool. Michel

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Search.

August 9, 2007

Genia,

You don't HAVE to go back to Dr Aceves, but he includes free fills

for life with the cost of his surgery. I live in Indiana and I plan

to return to him for my fills. My understanding is that the only

thing he charges during these fills is about $80 for the fluro (x-ray

room time).

>

> Thanks for all the help so far.

> I have noticed that a lot of you say to get a fill within the first

2 months.

> so, it would probably be smart to go ahead and get plane tickets

for the

> second trip early also so I get a better deal huh?

> Cause I have to go back to him correct?

> I live in Texas, by the way in case someone knows of a dr here that

will

> fill someones elses band...

>

> Genia Everett

> Peke Rescue

>

> We can judge the heart of a man by his treatment of animals.

> --Immanuel Kent--

>

> Please don't breed or buy while shelter pets DIE!

> OPT TO ADOPT!!!!

>

> ************************************** Get a sneak peek of the all-

new AOL at

> http://discover.aol.com/memed/aolcom30tour

>

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