Newbie

[Guest guest]

Adverse reactions...88% of patients in a US clinical study had adverse reactions or events and that a good number of these had to have additional surgery....lolo...can these be because US doctors have just started doing this surgery very recently and Mexico doctors had been doing this surgery for years?lauratexas668 <laura.trumble@...> wrote: Hey everybody!My namd is and I'm new to the site. I just recently started to research weight loss surgery options and Nina referred me to this site

[Guest guest]

Hi Judy: No, you're probably not up to surgery or anything else because you've been in chronic pain. It's a real drag on you mentally and physically. The best thing I ever did was find this site (after double knee replacement in September) because I was in pain, afraid of pain meds, thought something went wrong with my surgery and that I wasn't progressing on schedule. You name it, and I worried about it. I found out here that I was having a normal recovery, which is a very individual experience. Some people are pain free and quit limping from one to three months post op. I quit limping at four. I found out last week that I can still get very sore knees. Most say it takes a year to totally recover. I learned here that pain meds are important to your physical and mental healing. Don't be a hero. Keep

your surgeon apprised of your pain levels and him/her know if what you are taking isn't doing the job. Don't try to skip dosages and let the severe pain get a hold on you. You will particularly need your meds right before physical therapy, so you can work hard at getting your knees to bend and straighten. You may want to talk to your surgeon beforehand to ensure he/she will be in sync with your needs. Then you wean gradually wean off. My surgeon never brought up that subject. I would have suffered through weaning if I hadn't learned from here how to do it the right way. I recently wrote a recap of my recovery in answer to someone's question about what to expect. I'll send it to you if it's still in my sent box. Warm regards, Donna RAYMOND L FERLAND <rayjferland@...> wrote: HelloAfter a couple of difficult years health wise, I am scheduled for a total knee the 21st of May. Really not up for it but my knee is gone! What do I have to look forward to?ThanksJudy Ferland Colorado

The fish are biting.

Get more visitors on your site using Search Marketing.

[Guest guest]

Welcome aboard Judy. I'm . I'm 42 and once my right knee was worn down to bone on bone, I had no choice but to have a TKR. It was very scary but I felt prepared in every way thanks largely to this group.

What questions do you have, specifically?

>>After a couple of difficult years health wise, I am scheduled for a total knee the 21st of May. Really not up for it but my knee is gone! What do I have to look forward to?ThanksJudy Ferland Colorado

[Guest guest]

Hello ,

I have had a very difficult three years. I had a double mastectomy three

years ago, followed by chemo and radiation. Since then I've had a thumb

joint replacement , a complete hysterectomy, a bladder repair as well as

another surgery to repair damage done to my chest wall as a result of the

cancer surgery. Needless to say, I'm really tired of medical procedures,

but now my knee which has been a problem for the last three years is simply

worn out. I'm not ready mentally to have this surgery, but am out of

options, the knee is simply worn out.

I want to know what to expect so that I can prepare myself and get on with

my life. I am going to the class at the hospital...that may help. I want

my knee fixed, but am tired of medical procedures. I count my blessings, I

am cancer free...now I want to make the pain go away so I can be more like

myself again.

I welcome any suggestions to help me through the first few weeks.

Thanks

Judy

Judy Ferland

Colorado

>From: " Risener " <mariaelisa64@...>

>Reply-Joint Replacement

><Joint Replacement >

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>

>Welcome aboard Judy. I'm . I'm 42 and once my right knee was worn down

>to bone on bone, I had no choice but to have a TKR. It was very scary but I

>felt prepared in every way thanks largely to this group.

>

>What questions do you have, specifically?

>

>

>

> >>After a couple of difficult years health wise, I am scheduled for a

>total

>knee the 21st of May. Really not up for it but my knee is gone! What do I

>have to look forward to?

>

>Thanks

>

>Judy Ferland

> Colorado

[Guest guest]

The main thing is to have the help you will need. Also to stay in the

hospital as long as they will let you.

>

>

> Hello ,

>

> I have had a very difficult three years. I had a double mastectomy

three

> years ago, followed by chemo and radiation. Since then I've had a

thumb

> joint replacement , a complete hysterectomy, a bladder repair as well

as

> another surgery to repair damage done to my chest wall as a result of

the

> cancer surgery. Needless to say, I'm really tired of medical

procedures,

> but now my knee which has been a problem for the last three years is

simply

> worn out. I'm not ready mentally to have this surgery, but am out of

> options, the knee is simply worn out.

>

> I want to know what to expect so that I can prepare myself and get on

with

> my life. I am going to the class at the hospital...that may help. I

want

> my knee fixed, but am tired of medical procedures. I count my

blessings, I

> am cancer free...now I want to make the pain go away so I can be more

like

> myself again.

>

> I welcome any suggestions to help me through the first few weeks.

>

> Thanks

>

> Judy

>

>

> Judy Ferland

> Colorado

>

>

>

>

>

> >From: " Risener " mariaelisa64@...

> >Reply-Joint Replacement

> >Joint Replacement

> >Subject: Re:Newbie

> >Date: Fri, 13 Apr 2007 15:50:27 -0700

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SMTPSVC;

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Apr

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> >

> >Welcome aboard Judy. I'm . I'm 42 and once my right knee was

worn down

> >to bone on bone, I had no choice but to have a TKR. It was very scary

but I

> >felt prepared in every way thanks largely to this group.

> >

> >What questions do you have, specifically?

> >

> >

> >

> > >>After a couple of difficult years health wise, I am scheduled for

a

> >total

> >knee the 21st of May. Really not up for it but my knee is gone! What

do I

> >have to look forward to?

> >

> >Thanks

> >

> >Judy Ferland

> > Colorado

>

[Guest guest]

Hi Cat,

If they're going in by cutting the back of his ear, have him wear a

button down shirt on the day of surgery - he won't want to pull anything

over his head.

Make sure he realizes that it will take a good three or four days for

the anesthesia to wear off. He may have some nausea in the couple of

hours after waking up (I always did), so be ready for that (usually the

hospital warns you about that). He'll have some sort of a big bandage

over his ear for the first 24 hours - it will look somewhat bloody, so

don't freak out - it will be fine. Expect a small amount of

bleeding/bloody discharge from the ear for a few days (easily stopped by

a dry cotton ball. Pain for me wasn't really an issue - I didn't use

any of the pain medicine prescribed - only Tylenol for discomfort. He

probably won't be too interested in food for the first 24 hours, but

have him stay hydrated - his throat/mouth might be a bit sore anyway, so

the drinks will feel good. Bring him back on solid food slowly - get

some advice from the nurses about that if you can (steak and fries on

night two is NOT a good idea ... unfortunately been there & done that

.... man was that dumb). Try not to let him lift much of anything for

the first couple of weeks (ten pounds was my limit). Have him avoid any

vigorous activity until the doctor gives the go-ahead. Have them write

that down for you if he'll need it for work. For showering, he won't

want to get any water in the ear. The best thing is a cotton ball

dipped into petroleum jelly and rolled around in his fingers ... then

stick it in his ear. Then I usually held a dry washrag (a nice big

thick one) over the ear and washed my hair with the other hand. The

incision won't be too bad. I would gently wash it with soap and water

and then use isopropyl alcohol to gently clean the incision. It should

heal quickly. After my first surgery I had to go through a mix of white

vinegar and water syringing of the operated ear, but I never had to do

that for my other two surgeries. I'm not sure why about that one.

If his jaw feels sore and a little out of place, that's par for the

course. He'll have a deep plug in his ear for a good week or so and it

will likely not let him have a normal bite - my teeth were a bit out of

wack. As soon as the plug came out, it was fine. His jaw might snap

back into place and then back out again when he chews during this time -

it might invoke a bit of a gasp, a minor short pain, and a look of surprise.

All the best ... it was good of you to keep after him. It was only

going to cause more damage the longer it was in there. Suggestions for

resting ... gradually longer slow walks, favorite movies (... something

other than chick flicks, eh?), favorite books, and sitting around

petting kitty cats (or puppy dogs).

Matt

cat3686 wrote:

>

> Hi! My name is Cat. I don't have a cholesteatoma, but my boyfriend

> does. When we started dating he warned me that his ear kinda dripped

> and had an odor, and over the last 1 1/2 years I got sick of it and

> kept pressing him to go see a doctor. He's now finally gotten it

> looked at and he has surgery this Tuesday. From all you veterans of

> surgery out there: What are some recovery or resting tips after the

> surgery? I'm staying with him at his parents house after the surgery

> to keep him company, but I don't have any information on how to care

> for the ear after the surgery or any good ideas on how to make him

> more comfortable. Any info, things that helped during recovery, or

> even stuff that often happens (ringing of the ears, fluid, I don't

> know, anything) during recovery would be appreciated. I want to be

> well prepared when I get there.

>

>

--

[Guest guest]

That's a great show isn't it?!

Legit..Absolutely..I was banded 2-1-06 with Dr.Aceves..I had the best

surgeon for a really great price!

Well, the reality is ..if it's stuck it will come out or go down

eventually... one way or another! I don't think any ER would be able to

do a damn thing about it either...lol....When something gets stuck

usually, warm liquids will help it along.. down..or a visit to the Jon

will produce great relief! If your careful with chewing and listen to

what your band is saying you can handle.... as far as food consistancy

it will not happen much. It's when you eat fast or don't chew it well,

or your band is a bit tight that will get you into trouble..:-)

It was the best decision ever! I'd pay double for his experience!

Dana

In , " jengibresoyyo "

<jengibresoyyo@...> wrote:

>

> I just received info about Dr. A., the hospital and the low cost

option

> of performing a lap-band. Is all of this legit? And what happens

after

> 6-8 months post op when a piece of food gets stuck in the lap band

and

> people at your nearest ER can't fix it? Sorry, been seeing the show

BIG

> medicine too much.

>

[Guest guest]

Legit? Hmmmmmm....interesting question. I went to Dr. Aceves and had lapband surgery in Feb. 2006. I have lost 107 pounds since then. That is legit enough for me!!! lol Oh, and having food get stuck is an issue we all deal with at times but I don't recall ever hearing of anyone having to go the the ER to get food "unstuck" but that doesn't mean it isn't a remote possibility. You learn pretty quickly how to chew your foods...which foods your band won't tolerate...which foods you have to work with to get at a tolerable leverl and so forth. I can't imagine that stuck food would constitute as an emergency. An uncomfort, yes, but not an emergency. Dr. Aceves and his team are much better than the show Big Medicine. Hell, it saved my life! I was well on my way to death caused by morbid obesity but not anymore! In fact, I'm calling it a

night now so I can get up for my DAILY 2 mile run before it gets too terribly hot in the morning!!! (Just ONE of the many physical activities I enjoy since losing my weight!) Believe it....it's legit! Jenni DOB 2/23/06 247/140/145 4 fills 3 unfillsjengibresoyyo <jengibresoyyo@...> wrote: I just received info about Dr. A., the hospital and the low cost option of performing a lap-band.

Is all of this legit? And what happens after 6-8 months post op when a piece of food gets stuck in the lap band and people at your nearest ER can't fix it? Sorry, been seeing the show BIG medicine too much.

Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out.

[Guest guest]

Just the thought should keep you from swallowing big chunks of food.

Steve

>

> I just received info about Dr. A., the hospital and the low cost

option

> of performing a lap-band. Is all of this legit? And what happens

after

> 6-8 months post op when a piece of food gets stuck in the lap band

and

> people at your nearest ER can't fix it? Sorry, been seeing the show

BIG

> medicine too much.

>

[Guest guest]

Even if it did happen an ER can fix that. They could go down with a scope and get it. But that's pretty darn rare. Usually it would just come back up if it won't go down. What ERs are not great about knowing how to do is unfills. That's not usually an emergency though.

On 8/1/07, renoalaska <renoalaska@...> wrote:

Just the thought should keep you from swallowing big chunks of food.Steve>> I just received info about Dr. A., the hospital and the low cost option > of performing a lap-band. Is all of this legit? And what happens after > 6-8 months post op when a piece of food gets stuck in the lap band and > people at your nearest ER can't fix it? Sorry, been seeing the show BIG > medicine too much.>

[Guest guest]

I am 57 so I got you beat. Got my lapband in May. If you count the

preop diet I had lost 50 pounds when I went last week for my

first 'fill'. I can feel the difference already. My joints are

thanking me & hopeing for more loss so they can really thank me.

I knew I had to do something as I could not diet anymore.

Just weighed today & it is 55 pounds. If you are hurting now just

think what it will be like in 10 years.

I think my choice was get the surgery or buy a Hoveround.

Steve

DOB 5/22/07

426/390/240

>

> HI Everyone,,,,,,,,,,I am debating a lapband but things I am

starting

> to hear scare me. I hear some actually gain wieght then go on to a

> bypass or the band slips or this happens or that happens, are you

nuts?

> Going to Mexico? I have several friends here in Colorado who have

had a

> bypass and cant seem to understand my resistance. I am dead set

against

> a bypass,,,,,,I like my innerds the way they are thank-you. And

with no

> ins I cant afford surgery here. I am still 3-6 months out from

surgery

> and reading like a fiend!!! Excerise is hard for me as my knees are

> shot <arthritis> neck and shoulder too,,,,,,my hope is as I lose

weight

> I will slowly be able to do some but to start with I know I cant do

> much. I am probably older than a lot of you too,,,,will that make a

> difference? Any advice for this old lady?

>

> Soon to be 53

> Deb

>

[Guest guest]

Hi Markey,

I had my first hip put in in 1990. Had it revised in 2004 although I had

been told in 2000 that I needed a new hip.

I hope your revision turns out to be very successful and give you years of

painfree movement.

Aussie Margaret

LTHR 1990 revised 2004

Newbie

| Hi,

|

| I had my THR in 1996 and am now facing a revision. I've been in a lot

| of pain for several years but tests, x rays, bone scans just led me

| from one expert to another. The recent bone scan (2 years after the

| first in this saga) showed that the cement is loose all around and

| broken at the base. So, while I hate the thought of another surgery,

| I'm anxious to get it over with to get rid of the pain and discomfort.

|

| I'm here to learn what I can.

|

| Markey

|

|

|

|

[Guest guest]

Hi All,

Just joined -I am 55 with multiple problems ranging from scoliosis with DDD,

Osteoporosis severe, Fibromyalgia, CFIDS, Myofascial Pain Syndrome, plus

both knees are completely 100% disabled due to being born with unstable knees

that have gone out of joint on me my entire life. Doc says he doesn't know why

I am not in a wheelchair~~ I am fighting that with all I have due to fact I

was bedridden for 2 years & never want to exist like that again.

Now, main reason currently I am interested in joint problems is that I

desparately need knee surgery-am scared to death first, have no insurance to

pay

second, and before I do anything want to make certain that I am doing the

right thing with the right doctor. Of course I should get a second opinion but

really I know my knees are gone so I just want to find correct pro-cedure with

best doctor which being I have no way to pay is gonna be tricky in & of

itself!

I will be lurking to get to know you all & want to say I look forward to

exchanging ideas & feelings, etc. Talk to ya soon~~

Chris-FL

[Guest guest]

Hi in Florida, I have been lurking for 3 years and was concerned about

your not getting help to pay the TKR expenses. When I had my first one replaced

I was told Vocational Rehabilitation would pay for it so I could go back to work

afterward. Please check with them. I didn't need to go that path thank God for

that. There should be temporary Disability Benefits ( short term ) have you

checked into this at your Social Services Dept.? I have had both knees

replaced. I now have number 3,4, & 5 lumbar disk that is actually crumbling.

DDD. I am 68 still on my feet and live alone. I will have to see a pain

management specialist when the time comes but determined to make it as long as I

can. The Orthopedist here in NC would not do them until I was over 60. Good Luck

to you. I don't know about anyone else but Faith and Prayers go a long way if

you believe. Bob in NC.

Re: Newbie

Hi All,

Just joined -I am 55 with multiple problems ranging from scoliosis with DDD,

Osteoporosis severe, Fibromyalgia, CFIDS, Myofascial Pain Syndrome, plus

both knees are completely 100% disabled due to being born with unstable knees

that have gone out of joint on me my entire life. Doc says he doesn't know why

I am not in a wheelchair~~ I am fighting that with all I have due to fact I

was bedridden for 2 years & never want to exist like that again.

Now, main reason currently I am interested in joint problems is that I

desparately need knee surgery-am scared to death first, have no insurance to

pay

second, and before I do anything want to make certain that I am doing the

right thing with the right doctor. Of course I should get a second opinion but

really I know my knees are gone so I just want to find correct pro-cedure with

best doctor which being I have no way to pay is gonna be tricky in & of

itself!

I will be lurking to get to know you all & want to say I look forward to

exchanging ideas & feelings, etc. Talk to ya soon~~

Chris-FL

[Guest guest]

Hi M.D.,

In case you are not aware of this, your first exposure with

Walgreen's, if applying for a Pharmacy Technician position, is that

they will give you a computer format exam to take. I am told it is

fairly simple in the respect to see if you have some knowledge

concerning the Pharmacy field. Other than that, the interview is a

separate deal and differs from store to store. Just wanted to mention

this as some of my students were surprised and did not expect an exam.

Wishing you the best of luck!

Joe Medina, CPhT

----------

Hi,

First, I would like to thank Jeannetta for this wonderful forum with a

lot of resource.

I am planning on apply at Walgreen for the pharmacy technician

position (no experience). Does anyone here works for this retail

store? How was the interview? Any info. is greatly appreciated.

Thank you so much

[Guest guest]

a, welcome. Don't be afraid to ask questions. the only dumb question is

the one that isn't asked. Yes, this is a VERY friendly and supportive group.

They have helped me thru a few bumps in my recovery, things a surgeon doesn't

tell you about, and only a patient can truely understand. And, there are some

extremly knowledgable people here. It is my opinion that some people here are

as knowledgable as any doctor; they've done so much research and readily share

that information with the group. And I'm grateful for all of them.

Tammy Klaus

tammy.kl@...

Newbie

Hi Everyone,

I'm new to this site and I am contemplating having a TKR in a couple

of months. Before I ask any dumb questions or repetitive questions,

I'm going to read the information on the site. I have LOTS of questions.

Judging from the few messages I've read so far, this is a very

friendly and helpful site.

Best wishes to all.

a

[Guest guest]

Hello a, I will be having 2 TKRs soon too. A site that

answers a lot of questions is: http://www.kneesforyou.com/

Where do you live and do you have a surgeon yet?

Hollie

> Hi Everyone,

>

> I'm new to this site and I am contemplating having a TKR in a couple

> of months. Before I ask any dumb questions or repetitive questions,

> I'm going to read the information on the site. I have LOTS of

questions.

>

> Judging from the few messages I've read so far, this is a very

> friendly and helpful site.

>

> Best wishes to all.

>

> a

>

[Guest guest]

Glad to have you here!  Hope you continue to have success with your healing process also!!

 

-- })i({  Melinda Kaye Spille  })i({Very Proud Wife of Captain " Big Al " Super Blessed Mommy of Trinity, Emelia & TreyRomans 8:28, Ephesians 3:20(\__/) (='.'=)

( " )_( " )

On Tue, Jul 14, 2009 at 4:14 AM, debaitken37 <deborah.611@...> wrote:

Hi Im new here but so glad I found this site . Im at day 26 of having my choleateatoma removed , Everything is gone in the inner/middle ear.Its been up and down and am now enjoying for the first time since op pain free days due to granuloma and infection in the ear.

My c/oma took forever to be diagnosed (Im 47 and had probs all my life) which is why the surgery had to be so radical.3 weeks prior to c/oma removed I had a large polyp taken out of same ear.Im glad to be this side of it all and will be happier when weekly visits to the doctor are doen to 3 monthly , a long way off he tells me but we will get there.

Only real worry I have is that I was only in hospital overnight and I really didnt think I was fit to be at home , I was way of balance and very groggy for 2 / 3 days after .Anyway if I can pass on any advice to any one it would be have this dealt with a.s.a.p to avoid total hearing loss and undue pain as I have suffered .

Good luck to you all . Cheers Deb

[Guest guest]

Sorry supermom1,

This thing has to come out. The longer it remains in, the more damage

it can do and the more complicated the situation can become. I've gone

through this three times and as far as post-surgery is concerned I

simply didn't let this slow me down (and it's a little tougher on us

oldsters). This isn't anything to panic about, but waiting four years

to have the surgery is way beyond the norm. I have arranged for my

surgery to be done at the end of an academic semester (a couple of

months later), but that's the only delay that was involved.

I'm not sure what in the world you've been reading about quality of life

post-surgery, but ... we could take a poll, but most of us are doing

pretty darn good. I refuse to swim (never liked it anyway), but I had

canal wall up surgery and I'm supposed to be able to do that too.

Beyond that ... I can't think of any permanent restrictions that I've

had to deal with. In comparison, diabetes has had a profound impact on

my life.

Oh ... I don't do too well on roller coasters or those big swinging

Viking ship thingies ... but I never liked them either!

Please get your son through this surgery soon,

Matt

supermom1@... wrote:

>

>

> Hi All,

>

> 11 year old son, suspected C-toma-CT scan 4 years ago clear-surgeon

> won't do another scan before surgery. mild hearing loss, enlarged

> vestibular aquaduct-lots of buildup of material in ear-looks like rice

> cakes! Experimenting with EFA and probiotics-ear seems to rid itself

> of wax buildup better with lots of EFA's. Hasn't had lots of

> infections-has huge adenoids and tonsils-retracted drums probably

> because of blocked eustation tubes. I would like to avoid surgery, at

> this time, as other than buildup of material in ear and mild hearing

> loss child is fine-no vertigo, facial paralysis issues, no

> infections...everything I've read over last few months about c-toma

> surgery is gruesome and outcome has poor quality of life for a young

> person and forever more. I understand the risks if left untreated but

> surgeon (great guy-bigwig from over the pond currently at Sick Kids

> toronto) insists on surgery. (looking for apples one finds apples,

> no?) Help! Is " watching and waiting " appropriate? Has anyone tried to

> discover WHY they build up keratin-perhaps, as I speculate, an

> essential fatty acid metabolism dysfunction? Are any naturopaths

> working on this? History of paternal allergies, asthma, arthritis,

> exzema, smoking, ulcerative colitis-maternal-borderline lupus ANA-is

> there an autoimmune component to this problem? Any help would be most

> appreciated! Thank you so much.

>

>

--

[Guest guest]

There is absolutely no reason whatsoever to hold off on c-toma surgery.  I equate 'electing' to not have surgery to pulling the pin on a grenade and holding it your hands to see just how bad the damage will really be.  I don't know which sites you are reading, " Supermom " - but I would get my tail off the internet and get my son's surgery scheduled.  Probiotics aren't going to fix this.

 

- I HATE to swim too!  LOL!-- })i({  Melinda Kaye Spille  })i({Very Proud Wife of Captain " Big Al " Super Blessed Mommy of Trinity, Emelia & TreyRomans 8:28, Ephesians 3:20

(\__/) (='.'=) ( " )_( " )

On Thu, Jul 16, 2009 at 5:16 PM,

[Guest guest]

Hi Supermum,

I feel for you. My 5 year old son had surgery 2and a half weeks ago & believe me I did all I could to avoid it, but we had no choice. Like your son, Joe suffered from hearing loss, but that was all, no ear infections etc.

His recovery has been amazing, he wanted to go back to school 2 days after surgery (of course I said no).

He had a combined approach ie through the ear canal & canal wall up, which means he will be able to swim etc & he has had no dizziness. He had some minor loss of taste, but that has returned.

But he will have to have another surgery in 18 months to check for regrowth.

My understanding is that CT scans & MRI's don't show the growth effectively. After many opinions we were told by ALL surgeons we had contact with, that the only way to be sure is through surgery.

I do wonder if I had not taken 6 months to decide whether his 'hearing bones' would have still been functioning.

We are all feeling more relaxed and happy now that the worst is over.

Good luck Donna

From: "supermom1@..." <supermom1@...>cholesteatoma Sent: Friday, 17 July, 2009 7:19:13 AMSubject: newbie

Hi All,11 year old son, suspected C-toma-CT scan 4 years ago clear-surgeon won't do another scan before surgery. mild hearing loss, enlarged vestibular aquaduct-lots of buildup of material in ear-looks like rice cakes! Experimenting with EFA and probiotics-ear seems to rid itself of wax buildup better with lots of EFA's. Hasn't had lots of infections-has huge adenoids and tonsils-retracted drums probably because of blocked eustation tubes. I would like to avoid surgery, at this time, as other than buildup of material in ear and mild hearing loss child is fine-no vertigo, facial paralysis issues, no infections.. .everything I've read over last few months about c-toma surgery is gruesome and outcome has poor quality of life for a young person and forever more. I understand the risks if left untreated but surgeon (great guy-bigwig from over the pond currently at Sick Kids toronto) insists on surgery. (looking for apples one finds apples, no?)

Help! Is "watching and waiting" appropriate? Has anyone tried to discover WHY they build up keratin-perhaps, as I speculate, an essential fatty acid metabolism dysfunction? Are any naturopaths working on this? History of paternal allergies, asthma, arthritis, exzema, smoking, ulcerative colitis-maternal- borderline lupus ANA-is there an autoimmune component to this problem? Any help would be most appreciated! Thank you so much.

Access 7 Mail on your mobile. Anytime. Anywhere. Show me how.

[Guest guest]

Hi,

We also couldn't decide whether to proceed with the surgery for our 6 year old.

The surgeon had done a CT scan and said it was fairly minor and it was up to us

to when we did it. Although he said it had to be within 12 months if we didn't

want major damage done.

The surgery was done 9 months ago, and they drilled through his skull. It was

not done through his ear canal. The cholesteatoma was much further advanced

than shown on the CT scan, there was no vertigo or other other issues than

recurrent ear infections. It had already destroyed the ear bones and started

into the skull. He now has a moderate hearing loss and wears a hearing aid.

He swims, runs, rock climbs, rides bikes, everything a child usually does at

that age. This week we are going snow skiing.

At this stage, we are so glad that we went ahead. The surgeon has said that

the damage would have been much greater had we waited. The cholesteatoma had

wrapped around the facial nerve and he managed to remove it with no damage.

There is no way to cure this except for surgery.

My son can't wait to have his next surgery as he wants to get his new bones so

that he can hear without his aid.

We are so glad that it has been completed. It is one less shadow over his head.

Good luck.

>

> Hi Supermum,

> I feel for you. My 5 year old son had surgery 2and a half weeks ago & believe

me I did all I could to avoid it, but we had no choice. Like your son, Joe

suffered from hearing loss, but that was all, no ear infections  etc.

> His recovery has been amazing, he wanted to go back to school 2 days after

surgery (of course I said no).

> He had a combined approach ie through the ear canal & canal wall up, which

means he will be able to swim etc & he has had no dizziness. He had some minor

loss of taste, but that has returned.

> But he will have to have another surgery in 18 months to check for regrowth.

> My understanding is that CT scans & MRI's don't show the growth effectively.

After many opinions we were told by ALL surgeons we had contact with, that the

only way to be sure is through surgery.

>

> I do wonder if I had not taken 6 months to decide whether his 'hearing bones'

would have still been functioning.

>

> We are all feeling more relaxed and happy now that the worst is over.

>  

> Good luck Donna

>

>

>

> ________________________________

> From: " supermom1@... " <supermom1@...>

> cholesteatoma

> Sent: Friday, 17 July, 2009 7:19:13 AM

> Subject: newbie

>

>  

> Hi All,

>

> 11 year old son, suspected C-toma-CT scan 4 years ago clear-surgeon won't do

another scan before surgery. mild hearing loss, enlarged vestibular

aquaduct-lots of buildup of material in ear-looks like rice cakes! Experimenting

with EFA and probiotics-ear seems to rid itself of wax buildup better with lots

of EFA's. Hasn't had lots of infections-has huge adenoids and tonsils-retracted

drums probably because of blocked eustation tubes. I would like to avoid

surgery, at this time, as other than buildup of material in ear and mild hearing

loss child is fine-no vertigo, facial paralysis issues, no infections..

..everything I've read over last few months about c-toma surgery is gruesome and

outcome has poor quality of life for a young person and forever more. I

understand the risks if left untreated but surgeon (great guy-bigwig from over

the pond currently at Sick Kids toronto) insists on surgery. (looking for apples

one finds apples, no?) Help! Is " watching

> and waiting " appropriate? Has anyone tried to discover WHY they build up

keratin-perhaps, as I speculate, an essential fatty acid metabolism dysfunction?

Are any naturopaths working on this? History of paternal allergies, asthma,

arthritis, exzema, smoking, ulcerative colitis-maternal- borderline lupus ANA-is

there an autoimmune component to this problem? Any help would be most

appreciated! Thank you so much.

>

>

>

>

>

>

________________________________________________________________________________\

____

> Access 7 Mail on your mobile. Anytime. Anywhere.

> Show me how: http://au.mobile./mail

>

[Guest guest]

Melinda,

thanks for your thoughts. See my reply to Matt-no clean evidence of c-toma. And, not just websites, books and medical journals. I didn't mean to suggest that any one dietary intervention would cure this. Really was just trying to reach deeper than "cut and burn" and solve a problem at a deeper level. (By the way, probiotics can help so many immune and inflammatory issues-why do you think they use them in hospitals now to reduce/eliminate c. diff. outbreaks.....) Anyhow, thanks for your opinion-I appreciate you taking the time to reply. Denna Poulos

From: Melinda Spille <melindakaye@...>cholesteatoma Sent: Thursday, July 16, 2009 8:30:54 PMSubject: Re: newbie

There is absolutely no reason whatsoever to hold off on c-toma surgery. I equate 'electing' to not have surgery to pulling the pin on a grenade and holding it your hands to see just how bad the damage will really be. I don't know which sites you are reading, "Supermom" - but I would get my tail off the internet and get my son's surgery scheduled. Probiotics aren't going to fix this.

- I HATE to swim too! LOL!-- })i({ Melinda Kaye Spille })i({Very Proud Wife of Captain "Big Al"Super Blessed Mommy of Trinity, Emelia & TreyRomans 8:28, Ephesians 3:20(\__/) (='.'=) (")_(")

On Thu, Jul 16, 2009 at 5:16 PM,

[Guest guest]

Hi

Just wanted to add my voice to the chorus. My 11 year old had surgery at the

beginning of the year. Until about May last year she had had no symptoms at all,

other than a history of asthma and mild ear infections as a pre-schooler.

Between May and October last year she had recurrent infections, occasional

severe pain, by November she had vertigo, jaw ache, and more severe pain. This

pain was the rolling around on the bed screaming for 12 hours sort of pain, not

relieved by any oral analgesics. The CT scan showed small cholesteatoma, however

at surgery in February it had actually destroyed all hearing bones, gone into

mastoid and was classified as severe. We were told the CT scan could not

necessarily pick up the extent, which was the case with her.

She now has no pain, no infection, though some hearing loss, which is not

bothering her very much at present. No hearing aid at present although she may

need one in the future. Her activities are only restricted as far as swimming

which we are trying to resolve (and hope to soon). She will have reconstruction

surgery next year. She plays soccer, runs and is planning more rock climbing

when we can fit it in.

I only wish we had known about this earlier, but she had no symptoms at all,

other than a retracted ear drum that was not thought to be a problem. The

symptoms when it finally hit were very distressing and I wish we could have

picked it up so that she could have avoided the pain she was in prior to the

surgery. The surgeon thinks that the cholesteatoma has been there for at least

6 years. My only advice is that the sooner it is operated on the easier it will

be and the less extensive the surgery.

good luck

> > From: " supermom1@ " <supermom1@>

> > cholesteatoma

> > Sent: Friday, 17 July, 2009 7:19:13 AM

> > Subject: newbie

> >

> >  

> > Hi All,

> >

> > 11 year old son, suspected C-toma-CT scan 4 years ago clear-surgeon won't do

another scan before surgery. mild hearing loss, enlarged vestibular

aquaduct-lots of buildup of material in ear-looks like rice cakes! Experimenting

with EFA and probiotics-ear seems to rid itself of wax buildup better with lots

of EFA's. Hasn't had lots of infections-has huge adenoids and tonsils-retracted

drums probably because of blocked eustation tubes. I would like to avoid

surgery, at this time, as other than buildup of material in ear and mild hearing

loss child is fine-no vertigo, facial paralysis issues, no infections..

..everything I've read over last few months about c-toma surgery is gruesome and

outcome has poor quality of life for a young person and forever more. I

understand the risks if left untreated but surgeon (great guy-bigwig from over

the pond currently at Sick Kids toronto) insists on surgery. (looking for apples

one finds apples, no?) Help! Is " watching

> > and waiting " appropriate? Has anyone tried to discover WHY they build up

keratin-perhaps, as I speculate, an essential fatty acid metabolism dysfunction?

Are any naturopaths working on this? History of paternal allergies, asthma,

arthritis, exzema, smoking, ulcerative colitis-maternal- borderline lupus ANA-is

there an autoimmune component to this problem? Any help would be most

appreciated! Thank you so much.

> >

> >

> >

> >

> >

> >

________________________________________________________________________________\

____

> > Access 7 Mail on your mobile. Anytime. Anywhere.

> > Show me how: http://au.mobile./mail

> >

>

[Guest guest]

Please please get this surgery done ASAP mine was left too long , and got to the point where it had eroded to near the facial nerve and meningis which meant I was a time bomb waiting to get meningitis or a brain absess , we are talking life threatening here as my surgeon informed me .

cholesteatoma From: melindakaye@...Date: Thu, 16 Jul 2009 19:30:54 -0500Subject: Re: newbie

There is absolutely no reason whatsoever to hold off on c-toma surgery. I equate 'electing' to not have surgery to pulling the pin on a grenade and holding it your hands to see just how bad the damage will really be. I don't know which sites you are reading, "Supermom" - but I would get my tail off the internet and get my son's surgery scheduled. Probiotics aren't going to fix this.

- I HATE to swim too! LOL!-- })i({ Melinda Kaye Spille })i({Very Proud Wife of Captain "Big Al"Super Blessed Mommy of Trinity, Emelia & TreyRomans 8:28, Ephesians 3:20(\__/) (='.'=) (")_(")

On Thu, Jul 16, 2009 at 5:16 PM,