To

[Guest guest]

, you are doing awesome! you are only like 4 weeks out, so you

are right on track, actually better than on track, you are above

average. Remember when you got your band they told you any weight

you loose before your first fill is a bonus because your band is not

fully functional until it gets a fill. But the thing I am puzzled

about is that you said you got 1 cc at time of banding? is this

something new that they are doing? because I have not heard of this

yet. So, when you get your first " true fill " you will begin to get

your restriction back. Your band is healed so it not all swollen and

irritated so that is why it is allowing things to pass through

easier. So, keep it up you are doing amazing! and I would worry to

much about heavy exercise right now, you are still healing and

adjusting to your new band. I didnt start working out really heavy

till about 6 months out or longer.

way to go on your loss, keep it up! :-)

take care,

> >

> > Congratulations !

> > You are doing great.

> > Your workout routine sounds awesome. 

> > I hope one day I have one like it.

> > Keep up the great work.

> >

> >

> >  

> > Burson

> > Pampered Chef

> > Independent Consultant

> > http://www.pampered chef.biz/ carrie b

> >  

> >  

> >

> >

> >

> > an oldie posting an update. :-)

> >

> >

> > Hi all! Long time no see from me, I know. I hope everyone is

doing

> > fabulous!!! :-) I know that this banded life has its ups and

downs,

> > and we all are finding out. But for me it is still the best thing

I

> > ever did for myself!! :-)

> > I am still stuck right above 200lbs. I get very frustrated with

> > myself that I am not budging on that number, but I do have some

> good

> > news that goes along with that. I work out at the gym about 2-

21/2

> > hours a nite and I am getting heavy into strength training. so I

am

> > getting kind of buffed. I have a friend who is doing figure

> > competitions and her and I work out pretty similarly. I do 11/2

> > weights 3 times a week and those days I also do an hour of

cardio.

> > then on the off days from weights I do 11/2 hours of cardio. So,

> > also I am not seeing the scale move I am seeing my body take on a

> > really cool shape. I have nice toned shoulders, chest, butt, legs

> > and stuff like that. And I think If I was a little more careful

on

> > my eating I would loose faster. I am going to try to start eating

5

> > small meals a day with lean protein and veggies with some complex

> > carbs. I am at the stage now where I could use a fill but I am

not

> > getting one at this stage. I need to learn to control myself with

> > the restriction that I have. and with my working out so intense I

> > cant go real low calorie, or else I would be weak and tired. so

my

> > goals for myself are changing, I still want to loose more pounds,

> but

> > I want an athletic, strong, kick ass body, not a slim, wimpy, no

> > muscle tone body. So, for me it is more about over all health

than

> > it is about the numbers on the scale. I feel great and I am

> enjoying

> > my new lifestyle! The gym is like my second family, those are my

> > peeps!! :-)

> > Well enough about that, I hope all of you are doing great and

> working

> > your bands. this banded life takes a great amount of work, but it

> is

> > worth it!! :-)

> > talk to you all soon,

> > hugs,

> >

> > dob 10-06-06

> > ps posted some new pics. :-)

> > (342)/322/204/ haven't decided

> >

>

[Guest guest]

Thanks !

About the 1 cc fill at surgery time. I asked before surgery what size band and if any would be put in at the time of surgery. Dr.Campos told me that Dr.Aceves would decide all of this when he "got in there". I think it is an individual decision that is made during surgery according to weight, how much you need to lose, what your goal is, how much fat is in the area where the band is placed, etc.

All I know is that right now things are great. I'd like to be losing more, I've been stuck at the same spot for about 1 week. I guess my body is catching up with itself.

I feel better, have more energy, and know I'm eating and drinking healthier.

Keep in touch. I'd like to know how your training is going.

Burson

Pampered Chef

Independent Consultant

http://www.pamperedchef.biz/carrieb

[Dr-Aceves-bandster s] an oldie posting an update. :-)> > > > > > Hi all! Long time no see from me, I know. I hope everyone is doing > > fabulous!!! :-) I know that this banded life has its ups and downs, > > and we all are finding out. But for me it is still the best thing I > > ever did for myself!! :-)> > I am still stuck right above 200lbs. I get very frustrated with > > myself that I am not budging on that number, but I do have some > good > > news that goes along with that. I work out at the gym about 2-21/2 >

> hours a nite and I am getting heavy into strength training. so I am > > getting kind of buffed. I have a friend who is doing figure > > competitions and her and I work out pretty similarly. I do 11/2 > > weights 3 times a week and those days I also do an hour of cardio. > > then on the off days from weights I do 11/2 hours of cardio. So, > > also I am not seeing the scale move I am seeing my body take on a > > really cool shape. I have nice toned shoulders, chest, butt, legs > > and stuff like that. And I think If I was a little more careful on > > my eating I would loose faster. I am going to try to start eating 5 > > small meals a day with lean protein and veggies with some complex > > carbs. I am at the stage now where I could use a fill but I am not > > getting one at this stage. I need to learn to control myself

with > > the restriction that I have. and with my working out so intense I > > cant go real low calorie, or else I would be weak and tired. so my > > goals for myself are changing, I still want to loose more pounds, > but > > I want an athletic, strong, kick ass body, not a slim, wimpy, no > > muscle tone body. So, for me it is more about over all health than > > it is about the numbers on the scale. I feel great and I am > enjoying > > my new lifestyle! The gym is like my second family, those are my > > peeps!! :-) > > Well enough about that, I hope all of you are doing great and > working > > your bands. this banded life takes a great amount of work, but it > is > > worth it!! :-)> > talk to you all soon,> > hugs,> > > > dob 10-06-06> > ps posted some

new pics. :-)> > (342)/322/204/ haven't decided> >>

[Guest guest]

Hi ....The fill during surgery isn't about restriction, it is only to make the band fit around your stomach well.On Tue, Jul 8, 2008 at 4:21 AM, Burson <burson.carrie@...> wrote:

Thanks !

About the 1 cc fill at surgery time. I asked before surgery what size band and if any would be put in at the time of surgery. Dr.Campos told me that Dr.Aceves would decide all of this when he " got in there " . I think it is an individual decision that is made during surgery according to weight, how much you need to lose, what your goal is, how much fat is in the area where the band is placed, etc.

All I know is that right now things are great. I'd like to be losing more, I've been stuck at the same spot for about 1 week. I guess my body is catching up with itself.

I feel better, have more energy, and know I'm eating and drinking healthier.

Keep in touch. I'd like to know how your training is going.

[Guest guest]

Pulsing is when you take something for a given amount of time and then stop.

Normally it is taken say five or six days a week and the seventh day off.

Or taken for 3 weeks and one week off, or 2 or 3 months and a month off. I

usually use the 5 day method--taking weekends off.

Samala,

-------Original Message-------

What is pulsing?

[Guest guest]

Where did you do you treatments? Very interested in why they changed ata?

<icare_dou@...> wrote: I find this VERY interesting. I

was a TBI patient that was a walking zoombie for 19 months. I also responded

quickly to HBOT. There were subjective improvements after the first 1-hour

treatment and measured objective improvements after 6 treatments. My protocol

was 30 minutes at 1.75 ATA followed by 30 minutes at 2.20 ATA twice a day

separated by 12-hours. Another " non-standard " protocol. Maybe I would have

responded the same at 1.50 ATA but I will never know.

.

Okay, so now I guess I'm involved in this discussion.?

I've just been reading and although I'm leary of soft sided chambers I'm in

favor of parents making their own choices.? Now I realize I got a personal?email

not long ago from e and she was asking me about Cameron's treatments and

how we got Tricare to pay for them.....I just today realized that she is the

person you are talking about who is involved with the treatments for veterans.?

Bear in mind that we are caring for a 27 year old man virtually by ourselves so

I don't get nearly enough sleep and sometimes things are a little fuzzy on my

end but now that I'm listening better haha would someone remind me what the

protocol is that they are advocating for the veterans with brain injuries?

Another thing...just before Cameron finished his most recent round of treatments

we were persuaded by the owner of the clinic to increase the time?he was in the

chamber to 90 minutes?and the depth to 2.? Now what I'm reading makes me think

that was a mistake and I'm relieved that he only had a few treatments with that

protocol.? I'm definitely in favor of all veterans getting hbot and having it

paid for by the government.? Each and every person who agreed to risk their life

in Iraq deserves the best but it would be counter-productive to get these

treatments paid for if we would be forced to use a protocol that is harmful.?

Then I would pay for Cameron's treatments myself --- thanks but no thanks?haha

[Guest guest]

Hello  

 

I was reading your email to Leonie and could not stop myself not to write you.

It is totally up to you to choose AP or nothing. nobody would force you to do

anything. but I am wondering what type of logic is that to bound yourself to

wheelchair and suffer and waiting for the worse to come and not taking

antibiotic. It just doesn't make any sense.

why are you so afriad of AP? I am sorry if I sound rude but I cann't help myself

..

soheila

 

..com.au>

Subject: rheumatic RE:

rheumatic

Date: Wednesday, August 27, 2008, 6:52 PM

_____

From: tuffys [mailto:tuffyslinknet (DOT) com.au]

Sent: Thursday, August 28, 2008 11:20 AM

Leonie Cent (centbigpond (DOT) com)

Subject: RE:

_____

From: tuffys [mailto:tuffyslinknet (DOT) com.au]

Sent: Thursday, August 28, 2008 11:09 AM

Leonie Cent (centbigpond (DOT) com)

Subject:

Hello Leonie,

Don't know if you remember me but I'm , from near Byron Bay. After

reading your post yesterday I felt sad and thought that I would email you,

to tell you that I would be happy should you wish to become your email

friend that we could chat and get to know one another if you wish.

I cannot offer any advice about our conditions or AP, but I can listen and

write. For myself I was so unsure whether to take the antibiotics' that I

just sat on the fence not knowing which way to go. Posting at times and

still being as confused with the different responses. But after reading

Vicki's post I have now made up my mind. For me , I have decided to do

nothing and just accept that for the time being that these are the cards I'm

dealt. I'm sure that like the stroke, heart failure and pulmonary embolism

I had to endure this disease will seem like a bad dream so I am waiting for

it to run its course.

Some days I have to use (my wheelchair), some days I don't. I try to

walk around the house as much as I can. But most of all I don't beat myself

up that has come into my life. I know some sufferers on the site are

adamant about not having a but can I say in my defense what

has brought me. It is when I am home alone that carries me to the

toilet to my glass door so that I can watch the birds and cows feed, watch

in the distance a ship/liner or boat travelling pass going to their

destination. Without I was in bed staring at my ceiling for 6

months, not being able to move before I agreed to buy . So having

for me is no problem, actually I should say thank you to him.

When I had my stroke in 1982, whilst I was in Intensive Care the young

inexperienced doctor on duty made a mistake on me for which I suffered

dearly. The hospital to correct this doctor's mistake brought out of

retirement their leading thoracic surgeon. It has been this experience that

has made me so cautious. I am doing my best not to complain about the

arthritis some days I cry and take pain killers all day stay in bed doing

nothing, some days I'm ok with it. Some parts of my body may not move like

they did before so I've decided to wait till they come back home.

Having, said all of this. This is the path I have chosen for me . You

must choose your path and I have every confidence that you will choose what

is right for you.

As mentioned before I live near Byron Bay. Actually west of Byron about a 20

minute drive. We have 5 acres currently of weeds because Greg, my husband

finds looking after me, the house a bit hard that outside has become a night

mare. We are debating whether to get a cow and calf to roam and chew the

grass down, but at present we need new fences so this idea is on the back

burner.

What we have done is the strip of land off our verandah to our neighbours',

fence we have after all the years of living here, decided to turn this into

our vegetable patch. It's great having it there I can walk or be wheeled on

to the verandah, have a cuppa sit in the sun so it warms me whilst Greg

weeds and doesn't have to mow this strip. Plus we will eat organic

vegetables when they are ready.

We have decided or Greg that this time he would like a portable chicken pen

this way he can move the pen where ever he wants for the chicken to turn up

and fertilize the ground, getting the patch ready for planting. So once he

has made the pen we will once again buy day old chicks and raise them, then

in 6 months time be collecting free range eggs.

I have told Greg that from now on presents that we don't need will be

replaced with trees to create our orchard. So this Christmas with our

children's help as they have to drive me to the nursery. Greg's Christmas

present will be from us a mandarin, avocado (as after all these years have

developed a passion for them) and hopefully a blueberry bush (for the

antioxidants they have). Ones that will survive in our area. We currently

have bananas and 1 lemon tree that bears profusely, when in season.

So I don't wear out my welcome I will say goodbye, reply if you want and I

will understand should you not want to.

Have a good day and best wishes

[Guest guest]

,

Can you send me the sites you have listed before. Thanks.

Thanks.

izabela.

In a message dated 3/2/2009 7:31:41 A.M. Mountain Standard Time,

the_learningtree2000@... writes:

Hi Tom,

Being 57 you actually have a much better chance of getting approved for

SSDI! After 50 or 55 (I believe, please someone correct this if I'm wrong) SS

doesn't expect you to train for a different job, which is VERY helpful for your

case. The other HUGE piece is your med records. I don't know if you joined

that group I mentioned (if you did they will give you excellent advice) but one

of the first things they will tell you to do is go to the SSA website and

look up the list of impairments ( I think it's called the blue book), find your

impairments and then make sure you have the testing they require for each

one and it's documented in your med files. Lawyers are helpful to have for this

but you really need to stay on top of your med files and making sure you get

all the tests you need and have good documentation that supports why you

can't work. I hope I am making sense, lol!

Take care,

>Thanks Jeannie, I have a letter from my doctor stating I should not work

>anymore and the SSDI folks have that.

You may have shared already but can I ask Tom how old you are? Dave

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

steps!

(_http://pr.atwola._ (http://pr.atwola./) com/promoclk/ 100126575x121882

2736x1201267884/ aol?redir= http:%2F% 2Fwww.freecredit report.com%

2Fpm%2Fdefault. aspx%3Fsc% 3D668072% 26hmpgID

%3D62%26bcd% 3Dfebemailfooter NO62)

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

**************Need a job? Find employment help in your area.

(http://yellowpages.aol.com/search?query=employment_agencies & ncid=emlcntusyelp00\

000005)

[Guest guest]

,

Can you send me the sites you have listed before. Thanks.

Thanks.

izabela.

In a message dated 3/2/2009 7:31:41 A.M. Mountain Standard Time,

the_learningtree2000@... writes:

Hi Tom,

Being 57 you actually have a much better chance of getting approved for

SSDI! After 50 or 55 (I believe, please someone correct this if I'm wrong) SS

doesn't expect you to train for a different job, which is VERY helpful for your

case. The other HUGE piece is your med records. I don't know if you joined

that group I mentioned (if you did they will give you excellent advice) but one

of the first things they will tell you to do is go to the SSA website and

look up the list of impairments ( I think it's called the blue book), find your

impairments and then make sure you have the testing they require for each

one and it's documented in your med files. Lawyers are helpful to have for this

but you really need to stay on top of your med files and making sure you get

all the tests you need and have good documentation that supports why you

can't work. I hope I am making sense, lol!

Take care,

>Thanks Jeannie, I have a letter from my doctor stating I should not work

>anymore and the SSDI folks have that.

You may have shared already but can I ask Tom how old you are? Dave

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

steps!

(_http://pr.atwola._ (http://pr.atwola./) com/promoclk/ 100126575x121882

2736x1201267884/ aol?redir= http:%2F% 2Fwww.freecredit report.com%

2Fpm%2Fdefault. aspx%3Fsc% 3D668072% 26hmpgID

%3D62%26bcd% 3Dfebemailfooter NO62)

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

**************Need a job? Find employment help in your area.

(http://yellowpages.aol.com/search?query=employment_agencies & ncid=emlcntusyelp00\

000005)

[Guest guest]

My first symptom that sent me to the ENT was a bout of vertigo - I went to the ENT and he saw what he thought was wax on my eardrum but after removal turned out to be something like a scab - this was a sign of a cholesteatoma - so the doctor sent me for a ct-scan that confirmed the diagnosis - the cholesteatoma was attached to my eardrum and had eaten away at 1-1/2 of my hearing bones - I had perfectly normal hearing before surgery - never suffered with infections (as an adult). When I went to the specialist (Otologist) he could see the cholesteatoma with his high powered microscope and showed my husband as well - I realize not everyones may be visible from the ear canal - but if your son has this scab type thing on his eardrum I would think a specialist would be able to see

a cholesteatoma because that is a sign that it is on the eardrum - but I am no doctor by any means.

If you don't know for sure he has a cholesteatoma - yiks - I would definitely be questioning as a parent what to do.

Good Luck!

From: Denna Poulos <supermom1@...>cholesteatoma@...Sent: Friday, July 17, 2009 3:09:37 PMSubject: To

Hi , and thanks for the gentle welcome!

How did you find out you had a c-toma? I wish we knew for sure. Yes, we have an Otologist, referred to by ENT. I agree that it is difficult to make a life-changing decision like this, and understand that NOT making it can be even more dire. (Being a first-born Libran perfectionist doesn't help! LOL.) No one in this group has said "don't do it". But I guess that one always has to justify their choices after the fact so it's unlikely that a disgruntled survivor would join this group anyways. Perhaps I joined to hear just what I've been hearing-to balance my own thoughts better. They say that to be a good debater one has to learn to debate the opposite side, no? I'm just covering my bases and everyone in this group has helped me see another side. And I'm grateful for that because I hope I'm smart enough to know that I'm biased and to do something about it when gathering information. Thanks for taking the time to reply!

From: Captain Definder <captaindefinder>cholesteatomaSent: Friday, July 17, 2009 8:57:08 AMSubject: Re: newbie

Welcome to the group.

Please get your son surgery - you will be very sorry if you continue to wait. He doesn't have vertigo, facial paralysis, infections, etc. (yet) - a cholesteatoma will not go away without surgery - they only grow larger and do more damage. I was mortified when I found out that I had a cholesteatoma (never had heard of anything like it) - had surgery (my first surgery ever) - the outcome was much better than I ever anticipated.

Find a great Otologist not a general ENT and take care of it - after all he is a child relying on his parents to take care of him - make the right decision for his future - get the cholesteatoma out.

I know as a mother that you probably would like to protect your child from having surgery (I would feel the same way if it were my child) -however, some things in life can't be ignored we have to face them head on and this is one of them - it is not life threatening if taken care of.

Good luck and take care!

From: "supermom1rogers (DOT) com" <supermom1rogers (DOT) com>cholesteatomaSent: Thursday, July 16, 2009 4:19:13 PMSubject: 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.

[Guest guest]

Denna, Thanks for the e-mail. I was diagnosed at 20 years old finally only because I needed to get my tonsils out so I was seeing a ENT specialist for that. My family doctor had asked me to have the ENT look in my ears while I was there

because I seemed to have a lot of scar tissue in one ear. The ENT gasped when he saw my ear, put me in a special room with a large microscope and called in all of the other doctors and nurses to show them my cholesteatoma. Because it had been growing for 20

years, the exploratory surgery showed more cholesteatoma than could be seen through the microscope that day. Also because it had 20 years to grow, it was found a few more times in the one ear and then found when I was 25 in my other ear. Yes, many of the surgeries

were followup but I think if doctors had caught the cholesteatoma earlier, it would not have been so aggressive. It was also determined during my last surgery (which was 13 years ago) that the cholesteatoma was so aggressive, it had wrapped around my facial

nerve, and while removing it, the nerve was stressed and I woke up paralyzed on one side of my face. The good news is that it was only a facial nerve stress and the feeling and movement came back within 6 months.

IDQ Companies

[Guest guest]

Hi Denna,

Does drainage come out of your sons ear? - if so, does it have a foul odor? - I wish I knew how to stop the fluid build up in my middle ear - I am not a person that believes in over the counter drugs because my heart rate is very sensitive (I have taken medicine for years to keep my heart rate down) - I have spoke to my ENT and Otologist about the fluid and I get the impression it is what it is and it's just my body and the way it functions - I know sudafed would probably really help dry things up but like I said I will not take it - foods may make a difference - I do eat dairy but have never been a milk drinker - I am very thin and eat very heathly so I am not willing to limit myself anymore than I already do - my father did smoke for many years when I was young - I let him know frequently what damage he did (ha ha!!). My Otologist explained how our ears fluff off skin (which we call ear wax) when your eardrum is retracted it can create a

little open where the eardrum is not totally sealing off the hole to the inner ear and then the build up of wax collects at the eardum creating a cholesteatoma (he always describes a cholesteatoma as dead skin) - I have never had a lot of ear wax in my ears - not everyones cholesteatoma may form in the same manner - he also described how the eardrum can retract back so much that a cholesteatoma can form right on the eardrum (which is what he feels happened to me - he had to patch my eardrum where the cholesteatoma was attached to it) - I look at it as some people are dispositioned for various elements and mine is the forming of a cholesteatoma - it was life altering for me at first because of all my symptoms before surgery - I am not 100% but can function normally in life - and the reason I say not 100% is because I do have equalibrium issues at times and can't do some things such as look up for long periods of time or maybe not look up at all

without losing my balance. Now looking back I wished that I would have pursued the fluid issues and not just accept the general practioners word of your ears look fine (I needed a good ENT) - but on the same note some things are very hard to diagnose (such as a cholesteatoma) and it takes symptoms before ever being diagnosed.

From: Denna Poulos <supermom1@...>cholesteatoma Sent: Sunday, July 19, 2009 10:34:18 PMSubject: To

So a doctor drained fluid from your ears over and over again when you were a child and you developed lots of scar tissue from that-and you had your tonsils/adenoids out when you were two so they couldn't be blocking the eustation tubes. Perhaps the periodic fluid buildup would have retracted your drums? And caused the cholesteatoma? (Sorry-this is me, once again, trying to get to a "cause"..... ) And I've been reading in this group that many of the children have had tubes and still developed a cholesteatoma. ...so perhaps, and I'm just thinking out loud here, that a goal would be to prevent that fluid buildup in the first place. Does that make sense? I know that children tend to build up fluid because their eustation tubes are more horizontal than the diagnonal in adults and fluid can collect there more easily. We also know that certain proteins in foods can promote inflammation and this fluid buildup-so my

guess would be to identify some foods that one has trouble with (isn't it usually dairy?) and avoid those. I'd be interested in knowing about the diets of people with this condition. Specifically it would be interesting to see if any strict vegans have this condition. My brain is working overtime here......it' s good that you rarely get sick either-I would imagine that being all stuffed up just makes everything worse for someone with a predisposition for this condition. This is great info . Thanks. Since my son has that negative pressure it seems more likely that he has indeed developed a cholesteatoma. Everyone has been so helpful in sharing their stories. Thanks again for taking the time to reply! Denna Poulos

From: Captain Definder <captaindefinder>cholesteatomaSent: Sunday, July 19, 2009 6:03:31 PMSubject: Re: To -again

when the doctor would lance my ears he was draining fluid off my ear through the eardrum (I have lots of scare tissue from this) - my mother never knew about tubes when I was young - I had my tonsils/adenoids removed when I was 2 yrs old - I very rarely ever get sore throats, etc. - the huge negative pressure is what will cause a cholesteatoma if not taken care of.

From: Denna Poulos <supermom1rogers (DOT) com>cholesteatomaSent: Sunday, July 19, 2009 12:43:40 AMSubject: To -again

Hi again ,

what the heck does having one's ears "lanced" entail? Yikes! So you've had a weakness there all your life-especially in the winter! My son doesn't have these issues. He MAY get one cold per year, which is odd for children, who seem to have at least 5 or 6. Every year his school teachers tell me that he has had the best attendance of all the students in his class. (Thank you fruits/veggies/ whole grains/no dairy!) It seems that retracted eardrums come from blocked eustation (sp?) tubes. Do you still have your tonsils/adenoids? If the adenoids are big they can block the tubes and cause negative pressure to build up in the ear-hence, the retraction of the drums. My son has a huge negative pressure in his affected ear. Although I am 50 I don't have my tonsils anymore-had them out at 3-that was the "surgery de jour" then. But I rarely get sick either! So, who knows. Denna Poulos

From: Captain Definder <captaindefinder>cholesteatomaSent: Friday, July 17, 2009 11:31:50 PMSubject: Re: To -again

when I was a child I had my ears lanced every week because of infections (I was too young to remember) - my cholesteatoma was discovered last year in June at age 42 - the doctor said I probably have had it for 10-15 yrs. - as an adult every year in February I always get a cold and my ears would hurt - I would go to the doctor and my ears always looked okay (so the doctor would say) - I have been told various times in my life that my eardrum is retracted which the doctor is confidential that is where my cholesteatoma started (from a retracted eardrum).

From: Denna Poulos <supermom1rogers (DOT) com>cholesteatomaSent: Friday, July 17, 2009 6:49:32 PMSubject: Re: To -again

Thanks . My son had the same scabby stuff on his eardrum but it was so painful to try to remove in the office, even via suction, that it was clear it was firmly attached. He's had 2 surgeries, a year apart, to debride the eardrum of this stuff. This was done by the ENT, and after 2 surgeries I said "enough is enoughwhy is this happening?" ENT just shrugged his shoulders. I told him that a yearly surgery is unacceptable and we need answers, so that's when we got the referral to the Otologist, who could see nothing from the exam because at the time his eardrum had more gunk on it but looked at the 4 year old CT scan (which was perfectly normal) and determined son needed surgery. So you can see why I feel unsure...... lately, the gunk has been falling more normally out of his ear and when we saw a particularly loose piece we had the specialist remove it. It was huge! Just sitting in his ear canal.. Specialist said "well, now we can get a good look

at the eardrum....looks not bad". And then said "see you on the surgery day!" So I'm confused and have bugged his nurse to no end-I'm sure I've been labelled a "problem parent" but I don't really care. So this group is helpful for giving me the "other side". The "what if I wait" side. Very helpful. Thanks for sharing again! p.s. do you have any other health issues you'd be willing to share? (I'm trying to find out why this happens in the first place and wonder if other conditions are common, concurrently. )

From: Captain Definder <captaindefinder>cholesteatomaSent: Friday, July 17, 2009 5:59:12 PMSubject: Re: To

My first symptom that sent me to the ENT was a bout of vertigo - I went to the ENT and he saw what he thought was wax on my eardrum but after removal turned out to be something like a scab - this was a sign of a cholesteatoma - so the doctor sent me for a ct-scan that confirmed the diagnosis - the cholesteatoma was attached to my eardrum and had eaten away at 1-1/2 of my hearing bones - I had perfectly normal hearing before surgery - never suffered with infections (as an adult). When I went to the specialist (Otologist) he could see the cholesteatoma with his high powered microscope and showed my husband as well - I realize not everyones may be visible from the ear canal - but if your son has this scab type thing on his eardrum I would think a specialist would be able to see a cholesteatoma because that is a sign that it is on the eardrum - but I am no doctor by any means.

If you don't know for sure he has a cholesteatoma - yiks - I would definitely be questioning as a parent what to do.

Good Luck!

From: Denna Poulos <supermom1rogers (DOT) com>cholesteatoma@ groups. . .comSent: Friday, July 17, 2009 3:09:37 PMSubject: To

Hi , and thanks for the gentle welcome!

How did you find out you had a c-toma? I wish we knew for sure. Yes, we have an Otologist, referred to by ENT. I agree that it is difficult to make a life-changing decision like this, and understand that NOT making it can be even more dire. (Being a first-born Libran perfectionist doesn't help! LOL.) No one in this group has said "don't do it". But I guess that one always has to justify their choices after the fact so it's unlikely that a disgruntled survivor would join this group anyways. Perhaps I joined to hear just what I've been hearing-to balance my own thoughts better. They say that to be a good debater one has to learn to debate the opposite side, no? I'm just covering my bases and everyone in this group has helped me see another side. And I'm grateful for that because I hope I'm smart enough to know that I'm biased and to do something about it when gathering information. Thanks for taking the time to reply!

From: Captain Definder <captaindefinder>cholesteatomaSent: Friday, July 17, 2009 8:57:08 AMSubject: Re: newbie

Welcome to the group.

Please get your son surgery - you will be very sorry if you continue to wait. He doesn't have vertigo, facial paralysis, infections, etc. (yet) - a cholesteatoma will not go away without surgery - they only grow larger and do more damage. I was mortified when I found out that I had a cholesteatoma (never had heard of anything like it) - had surgery (my first surgery ever) - the outcome was much better than I ever anticipated.

Find a great Otologist not a general ENT and take care of it - after all he is a child relying on his parents to take care of him - make the right decision for his future - get the cholesteatoma out.

I know as a mother that you probably would like to protect your child from having surgery (I would feel the same way if it were my child) -however, some things in life can't be ignored we have to face them head on and this is one of them - it is not life threatening if taken care of.

Good luck and take care!

From: "supermom1rogers (DOT) com" <supermom1rogers (DOT) com>cholesteatomaSent: Thursday, July 16, 2009 4:19:13 PMSubject: 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.

[Guest guest]

Denna,

I have been reading through your posts, and I can understand your

concerns. I also agree with your decision and the group concensus,

that there is a compelling need to do this surgery.

My daughter never had any problems before hers was discovered. No

infections, nothing. One day her eardrum ruptured and this monster had

been growing behind it. The first ENT did not consider the possibility

of ctoma, until trying several other things over three months.

By the time we had her surgery, the growth was huge, having eaten

through the first two hearing bones and most of the third. It had

spread throughout all the tiny spaces in the middle ear and mastoid.

She has gone to the chiropractor most of her life, always had a

natural diet, and used probiotics even before this. The problem is

that cholesteatoma is made up of normal cells that are growing

normally, but in the WRONG place. There is no need for the body to

recognize it as foreign until it is infected or causing major

problems.

Chloe has had 12 surgeries now, and you know what? She is doing great!

She is a strong and loving person who makes decisions that most

kindergarteners don't have to make. We have always told her exactly

what was happening and what it meant. We have a surgeon who she feels

comfortable asking questions (although she ignored him the first two

years). If you told me at the beginning of this that she would go

through so many surgeries or that a small amount of ctoma could become

infected, causing multiple emergency surgeries to treat a life

threatening bone infection, I would have been terrified, too. The

point of early surgery is to reduce the risk of this happening to your

child.

If your surgeon comes out and gives you the blessing of news that he

had no ctoma, then rejoice and move on! I would give anything to have

that happen to us.

Her last surgery was two months ago, and there was more the scan

showed. Hers grows in a matrix in the mastoid, more like a lining than

the traditional " pearl " . She also seemed to have a small new one where

her eardrum had retracted right into the opening of her " U-tube " ( I

like that new way of saying it). So that was all removed and the

surgeon is pretty confident that he got it all. The only reason she

did not have a CWD, which we were ok with, if needed, was that the new

growth was not in an area which would have had better access through

that procedure.

She has a new prosthesis which is actually working already, and she is

hearing speech at 20 dB instead of 60. (Although, the whole hearing

thing has become less important as I have come to understand the

primary goal of achieving a 'safe, dry ear " .) Maybe we have both now.

I don't know. We have been here before.

It's ok to be frustrated and read everything and ask lots of

questions, as long as you make a good decision. I think you have done

that, and I know we all look forward to hearing of his great outcome

in August.

On 7/21/09, Denna Poulos <supermom1@...> wrote:

> Hi ,

>

> no-no drainage or any foul smell-ever. Of course your medical professionals

> say " that's the way it is " -they aren't trained to look at deeper causes-they

> are trained to deal with what's in front of them. We don't do OTC either. We

> do take supplements and have a clean diet (most of the time! LOL) Yes,

> smoking can be a real problem for people with ear problems, and second hand

> smoke is no better. These days they're even talking about 3rd hand

> smoke-like the crud that stays on curtains and clothes, etc. No doubt Dad's

> smoking had a negative effect on you. The collection of crud in a

> cholesteatoma, I've read, is a mixture dead skin and dirt and fatty acids

> that as you say, gets sucked inward instead of moving normally out the ear

> canal. My son always had alot of ear wax and the GP would always say " he

> just has alot of wax " but I have felt for years that something wasn't

> right-years went by before we got a referral to an ENT, then a couple more

> years

> until we got referred to Otologist. I am worried about the equilibrium

> issues after surgery for my son as many in this group describe similar

> symptoms-he would hate that-I guess we'll just have to deal with it. I hear

> that ginger sometimes helps with this-you could try brewing up a ginger tea

> for yourself and see if that helps? Curious what kind of dairy you do

> eat-yogurt? cheese? If you like kefir you should try that-it's great for

> you-any kind of fermented foods are good for your gut, like unpasteurized

> saurkraut, miso, and the like. More than 70% of our immune system is in our

> gut so it pays to keep it healthy and the bacteria there balanced. I'm

> willing to bet that many in this group have had rounds and rounds of

> antibiotics and those things just wipe out all the friendly gut flora-that

> needs to be dealt with for good health. This isn't airy-fairy

> quakery-hospitals are now using probiotics to control c.diff outbreaks in

> hospital and to prevent them

> in the first place, especially amongst the elderly in long term care.

>

> I guess we'll just have to wait and see what is uncovered in surgery. I hate

> surprises! LOL. Our surgeon, after discussion, said he'd be willing to go

> through the ear canal first, rather than proceeding directly to the mastoid

> as he usually does, and make a decision at that time. I guess we won't know

> until we know. (That whole notion is so terribly unsettling for me.) Will

> let you know. Thanks for chatting !

> Denna Poulos

> ________________________________

>

>

>

>

>

> ________________________________

> From: Captain Definder <captaindefinder@...>

> cholesteatoma

> Sent: Monday, July 20, 2009 11:26:14 AM

> Subject: Re: To

>

>

> Hi Denna,

>

> Does drainage come out of your sons ear? - if so, does it have a foul odor?

> - I wish I knew how to stop the fluid build up in my middle ear - I am not a

> person that believes in over the counter drugs because my heart rate is very

> sensitive (I have taken medicine for years to keep my heart rate down) - I

> have spoke to my ENT and Otologist about the fluid and I get the impression

> it is what it is and it's just my body and the way it functions - I know

> sudafed would probably really help dry things up but like I said I will not

> take it - foods may make a difference - I do eat dairy but have never been a

> milk drinker - I am very thin and eat very heathly so I am not willing to

> limit myself anymore than I already do - my father did smoke for many years

> when I was young - I let him know frequently what damage he did (ha ha!!).

> My Otologist explained how our ears fluff off skin (which we call ear wax)

> when your eardrum is retracted it can create a little open

> where the eardrum is not totally sealing off the hole to the inner ear and

> then the build up of wax collects at the eardum creating a cholesteatoma (he

> always describes a cholesteatoma as dead skin) - I have never had a lot of

> ear wax in my ears - not everyones cholesteatoma may form in the same manner

> - he also described how the eardrum can retract back so much that a

> cholesteatoma can form right on the eardrum (which is what he feels happened

> to me - he had to patch my eardrum where the cholesteatoma was attached to

> it) - I look at it as some people are dispositioned for various elements and

> mine is the forming of a cholesteatoma - it was life altering for me at

> first because of all my symptoms before surgery - I am not 100% but can

> function normally in life - and the reason I say not 100% is because I do

> have equalibrium issues at times and can't do some things such as look up

> for long periods of time or maybe not look up at all without losing my

> balance.  Now looking back I wished that I would have pursued the fluid

> issues and not just accept the general practioners word of your ears look

> fine (I needed a good ENT) - but on the same note some things are very hard

> to diagnose (such as a cholesteatoma) and it takes symptoms before

> ever being diagnosed.

>

>

>

>

>

> ________________________________

> From: Denna Poulos <supermom1rogers (DOT) com>

> cholesteatoma

> Sent: Sunday, July 19, 2009 10:34:18 PM

> Subject: To

>

>

> So a doctor drained fluid from your ears over and over again when you were a

> child and you developed lots of scar tissue from that-and you had your

> tonsils/adenoids out when you were two so they couldn't be blocking

> the eustation tubes. Perhaps the periodic fluid buildup would have retracted

> your drums? And caused the cholesteatoma? (Sorry-this is me, once again,

> trying to get to a " cause " ..... ) And I've been reading in this group that

> many of the children have had tubes and still developed a cholesteatoma.

> ...so perhaps, and I'm just thinking out loud here, that a goal would be to

> prevent that fluid buildup in the first place. Does that make sense? I know

> that children tend to build up fluid because their eustation tubes are more

> horizontal than the diagnonal in adults and fluid can collect there more

> easily. We also know that certain proteins in foods can promote inflammation

> and this fluid buildup-so my guess would be to identify some foods

> that one has trouble with (isn't it usually dairy?) and avoid those. I'd be

> interested in knowing about the diets of people with this condition.

> Specifically it would be interesting to see if any strict vegans have this

> condition. My brain is working overtime here......it' s good that you rarely

> get sick either-I would imagine that being all stuffed up just makes

> everything worse for someone with a predisposition for this condition. This

> is great info . Thanks. Since my son has that negative pressure it

> seems more likely that he has indeed developed a cholesteatoma. Everyone has

> been so helpful in sharing their stories. Thanks again for taking the time

> to reply!

>  Denna Poulos

> ________________________________

>

>

>

>

>

> ________________________________

> From: Captain Definder <captaindefinder>

> cholesteatoma

> Sent: Sunday, July 19, 2009 6:03:31 PM

> Subject: Re: To -again

>

>

> when the doctor would lance my ears he was draining fluid off my ear through

> the eardrum (I have lots of scare tissue from this) - my mother never knew

> about tubes when I was young - I had my tonsils/adenoids removed when I was

> 2 yrs old - I very rarely ever get sore throats, etc. - the huge negative

> pressure is what will cause a cholesteatoma if not taken care of.

>

>

>

>

>

>

> ________________________________

> From: Denna Poulos <supermom1rogers (DOT) com>

> cholesteatoma

> Sent: Sunday, July 19, 2009 12:43:40 AM

> Subject: To -again

>

>

> Hi again ,

>

> what the heck does having one's ears " lanced " entail? Yikes! So you've had a

> weakness there all your life-especially in the winter! My son doesn't have

> these issues. He MAY get one cold per year, which is odd for children, who

> seem to have at least 5 or 6. Every year his school teachers tell me that he

> has had the best attendance of all the students in his class. (Thank you

> fruits/veggies/ whole grains/no dairy!) It seems that retracted eardrums

> come from blocked eustation (sp?) tubes. Do you still have your

> tonsils/adenoids? If the adenoids are big they can block the tubes and cause

> negative pressure to build up in the ear-hence, the retraction of the drums.

> My son has a huge negative pressure in his affected ear. Although I am 50 I

> don't have my tonsils anymore-had them out at 3-that was the " surgery de

> jour " then. But I rarely get sick either! So, who knows.

>  Denna Poulos

> ________________________________

>

>

>

>

>

> ________________________________

> From: Captain Definder <captaindefinder>

> cholesteatoma

> Sent: Friday, July 17, 2009 11:31:50 PM

> Subject: Re: To -again

>

>

> when I was a child I had my ears lanced every week because of infections (I

> was too young to remember) - my cholesteatoma was discovered last year in

> June at age 42 - the doctor said I probably have had it for 10-15 yrs. - as

> an adult every year in February I always get a cold and my ears would  hurt

> - I would go to the doctor and my ears always looked okay (so the doctor

> would say) - I have been told various times in my life that my eardrum is

> retracted which the doctor is confidential that is where my cholesteatoma

> started (from a retracted eardrum).

>

>

>

>

> ________________________________

> From: Denna Poulos <supermom1rogers (DOT) com>

> cholesteatoma

> Sent: Friday, July 17, 2009 6:49:32 PM

> Subject: Re: To -again

>

>

> Thanks . My son had the same scabby stuff on his eardrum but it was so

> painful to try to remove in the office, even via suction, that it was clear

> it was firmly attached. He's had 2 surgeries, a year apart, to debride the

> eardrum of this stuff. This was done by the ENT, and after 2 surgeries I

> said " enough is enoughwhy is this happening? " ENT just shrugged his

> shoulders. I told him that a yearly surgery is unacceptable and we need

> answers, so that's when we got the referral to the Otologist, who could see

> nothing from the exam because at the time his eardrum had more gunk on it

> but looked at the 4 year old CT scan (which was perfectly normal) and

> determined son needed surgery. So you can see why I feel unsure......

> lately, the gunk has been falling more normally out of his ear and when we

> saw a particularly loose piece we had the specialist remove it. It was huge!

> Just sitting in his ear canal.. Specialist said " well, now we can get a good

> look at

> the eardrum....looks not bad " . And then said " see you on the surgery day! "

> So I'm confused and have bugged his nurse to no end-I'm sure I've been

> labelled a " problem parent " but I don't really care. So this group is

> helpful for giving me the " other side " . The " what if I wait " side. Very

> helpful. Thanks for sharing again! p.s. do you have any other health issues

> you'd be willing to share? (I'm trying to find out why this happens in the

> first place and wonder if other conditions are common, concurrently. )

>

> ________________________________

>

>

>

>

>

> ________________________________

> From: Captain Definder <captaindefinder>

> cholesteatoma

> Sent: Friday, July 17, 2009 5:59:12 PM

> Subject: Re: To

>

>

> My first symptom that sent me to the ENT was a bout of vertigo - I went to

> the ENT and he saw what he thought was wax on my eardrum but after removal

> turned out to be something like a scab - this was a sign of a cholesteatoma

> - so the doctor sent me for a ct-scan that confirmed the diagnosis - the

> cholesteatoma was attached to my eardrum and had eaten away at 1-1/2 of my

> hearing bones - I had perfectly normal hearing before surgery - never

> suffered with infections (as an adult).  When I went to the

> specialist (Otologist) he could see the cholesteatoma with his high powered

> microscope and showed my husband as well - I realize not everyones may be

> visible from the ear canal - but if your son has this scab type thing on his

> eardrum I would think a specialist would be able to see a cholesteatoma

> because that is a sign that it is on the eardrum - but I am no doctor by any

> means.

>

> If you don't know for sure he has a cholesteatoma - yiks - I would

> definitely be questioning as a parent what to do.

>

> Good Luck!

>

>

>

>

>

>

> ________________________________

> From: Denna Poulos <supermom1rogers (DOT) com>

> cholesteatoma@ groups. . .com

> Sent: Friday, July 17, 2009 3:09:37 PM

> Subject: To

>

>

> Hi , and thanks for the gentle welcome!

>

> How did you find out you had a c-toma? I wish we knew for sure. Yes, we have

> an Otologist, referred to by ENT. I agree that it is difficult to make a

> life-changing decision like this, and understand that NOT making it can be

> even more dire. (Being a first-born Libran perfectionist doesn't help! LOL.)

> No one in this group has said " don't do it " . But I guess that one always has

> to justify their choices after the fact so it's unlikely that a disgruntled

> survivor would join this group anyways.  Perhaps I joined to hear just what

> I've been hearing-to balance my own thoughts better. They say that to be a

> good debater one has to learn to debate the opposite side, no? I'm just

> covering my bases and everyone in this group has helped me see another side.

> And I'm grateful for that because I hope I'm smart enough to know that I'm

> biased and to do something about it when gathering information. Thanks for

> taking the time to reply!

> ________________________________

>

>

>

>

>

> ________________________________

> From: Captain Definder <captaindefinder>

> cholesteatoma

> Sent: Friday, July 17, 2009 8:57:08 AM

> Subject: Re: newbie

>

>

> Welcome to the group.

>

> Please get your son surgery - you will be very sorry if you continue to

> wait.  He doesn't have vertigo, facial paralysis, infections, etc. (yet) - a

> cholesteatoma will not go away without surgery - they only grow larger and

> do more damage.  I was mortified when I found out that I had a cholesteatoma

> (never had heard of anything like it) - had surgery (my first surgery ever)

> - the outcome was much better than I ever anticipated.

>

> Find a great Otologist not a general ENT and take care of it - after all he

> is a child relying on his parents to take care of him - make the right

> decision for his future - get the cholesteatoma out.

>

> I know as a mother that you probably would like to protect your child from

> having surgery (I would feel the same way if it were my child)

> -however, some things in life can't be ignored we have to face them head on

> and this is one of them - it is not life threatening if taken care of.

>

> Good luck and take care!

>

>

>

>

>

>

>

>

> ________________________________

> From: " supermom1rogers (DOT) com " <supermom1rogers (DOT) com>

> cholesteatoma

> Sent: Thursday, July 16, 2009 4:19:13 PM

> 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.

>

>

>

>

>

>

>

>

[Guest guest]

,

I am tempted to bite my tongue, but since you feel that you are free to express

all of your feelings on the topic of how this group should be run, I feel that I

too am entitled to the same privilege. I would like to ask you to please

consider this:

The founding group, myself included, has worked hard over the years to make this

site what it is, a kind, caring thoughtful place where people can come for

information and support.

and I work hard to answer each and every post. When posts sit out there

unanswered, as has happened frequently to Donna, then we feel that the member is

being ignored and that places a burden on us to respond. Most members feel they

have the luxury of answering only those posts that they feel moved to....and

when they are overwhelmed they can just skip to the next post. That is just not

the position I am in. I asked Donna to try for more clarity so others can help

to answer her, I did not ask her for grammatical perfection. I am not a cold

hearted moderator that doesn't understand the unique characteristics and needs

of our membership, regardless of how you wish to portray me. If you feel that

asking someone to try to do more to help themselves is " harsh " than you are

entirely welcome to your opinion, but I will have to respectfully disagree with

it.

Please believe me , if I didn't care to give of myself here I have

plenty of other places to devote myself. This group takes a significant amount

of my time and energy. I do it freely and with a good heart. I do not feel that

my family or I should have to suffer the legal consequences of my ownership of

this group because someone wants to place content on this site that is

slanderous or dangerous. People come here of their own free will and if is not

meeting their needs then they are free to go elsewhere. In fact, if you wish to

begin a group where the norm is more " free wheeling " then you are more than

welcome to do so, there is nothing easier than starting a group. I will be

glad to show you how. Just take it from me, keeping a group up and running is

where the work is.

Take Care, Cam

[Guest guest]

I dont want an argument to start cause Michele has a similarly dsiabled brother and had concern for my limitations, Cam has rules and as her group my inabiltity to type well is a concern to her she thinks folks may ignore me due to the trouble it takes to read mine

I have explained the particulars of why i type with mistakes in an email at 2am this morning .

Due to the position i must sit in "only one I am comfortable to sit to type" for short periods of time. i answer posts fast and any longer to go back and fix mistakes my back hurts too much.

Laptop is ill placed due to lack of only having 2 outlets in old Vegas apt, its NON handicap, all wires tapes across floor so my walker doesnt trip . NOT allowed to use naill gun here so wires run direct from DRM to sofa, my Laptop selaed down so i dont trip over it, cant pick it up its too heavy and old. I must twist so ican see it , its old too heavy to pick up.

Havent noticed any posts of mine being left out and not answered all the importatn ones get answered. When i have serious concerns i'll ask to certain folks that i know casue they know my deal and all.

Cam, as it being your group, i dont want YOU to feeel lilke you must answer all my posts , in fact a times i just throw a comment out just cause im on the board at that time and dont expect answers unless i ask a real question.

Ive hosted my own group for actors for 3 years and its hard and long hrs and it was before my back went out. I have received much info from this group and thank you all.

I am appreciative of Michele she showed sensiitvity to my needs given her life with her brother who is disabled with many ailaments i have and its why i think she made the comment NOT to hurt anyone.

I think all ladies on here are well meaning and for myslef , i will limit or stop my involvement going forward taking all i learned and being greaftul.

As someone today said , the one wiht the ink stains, she said we are all hurting folks that have been through alot and need to stop to remind ourselves, remind ourselves that others arent at the place of healing that others are and SOME live in very small apts with strict rules as i do.

Thanks for letting me in and i pray all good things for everone in the future. Thank you Those that have my number and have called to encourage me going through 3 deaths in 3 months i welcmoe your calls, i talk much better than write LOL i thikn we all do LOL

All the best thank you and goodbye

Donna

From: cammaltby@...Date: Sat, 25 Jul 2009 13:47:07 +0000Subject: [ ] Re: To

,I am tempted to bite my tongue, but since you feel that you are free to express all of your feelings on the topic of how this group should be run, I feel that I too am entitled to the same privilege. I would like to ask you to please consider this:The founding group, myself included, has worked hard over the years to make this site what it is, a kind, caring thoughtful place where people can come for information and support. and I work hard to answer each and every post. When posts sit out there unanswered, as has happened frequently to Donna, then we feel that the member is being ignored and that places a burden on us to respond. Most members feel they have the luxury of answering only those posts that they feel moved to....and when they are overwhelmed they can just skip to the next post. That is just not the position I am in. I asked Donna to try for more clarity so others can help to answer her, I did not ask her for grammatical perfection. I am not a cold hearted moderator that doesn't understand the unique characteristics and needs of our membership, regardless of how you wish to portray me. If you feel that asking someone to try to do more to help themselves is "harsh" than you are entirely welcome to your opinion, but I will have to respectfully disagree with it.Please believe me , if I didn't care to give of myself here I have plenty of other places to devote myself. This group takes a significant amount of my time and energy. I do it freely and with a good heart. I do not feel that my family or I should have to suffer the legal consequences of my ownership of this group because someone wants to place content on this site that is slanderous or dangerous. People come here of their own free will and if is not meeting their needs then they are free to go elsewhere. In fact, if you wish to begin a group where the norm is more "free wheeling" then you are more than welcome to do so, there is nothing easier than starting a group. I will be glad to show you how. Just take it from me, keeping a group up and running is where the work is.Take Care, Cam

[Guest guest]

,

I understand your frustration. I also carry the medical benefits b/c my husband is self employeed. My situation is probably a little different because I didn't do all of the PT and injections prior to my revision surgery. Those were offered to me, but I knew I would eventually need a revision and I wanted to get on with my life. That's just me. I went on short term disability and was off work for a total of 10 weeks. I'm also a state employee (UTSW Medical Center in Dallas) so we are really large. My supervisior found a replacement for me for the time I was off. I went on FMLA (guarentees your job for a total of 12 weeks/year- family medical leave act). I had my surgery in Amarillo so I flew back there for follow up appointments. On those days I took paid time off. Prior to my surgery I tried not to use much of my PTO so that I could get paid for the time off before the short term

disability kicked in. Do you have short and/or long term disability? That was a lifesaver for us!

Melinda

Original Harrington Rod 1981

Revision July 2007 w/ Dr. LaGrone

From: sooner677037 <sooner6770@...>Subject: [ ] Torn Tendon in Rotator Cuff Date: Thursday, September 3, 2009, 11:50 PM

I had an MRI done at Consulting Orthopedics in Plano (used to be run by Dr. Shelakov until he passed away.) At this point I am still seeing his PA . Anyways I have to go see a Shoulder specialist to see what needs to be done. I also have a herniated disc, severe tendonitis in my shoulder, arthritis and whatever else can be wrong.What I really want to talk about is how does everyone handle working and having to take off for therapy, dr visits, and surgeries. Everytime I turn around something else needs to be done. I have had cortizone shots in both my facet joints. I also go to pt when I can. I am looking at possible shoulder surgery. Eventually complete revision. I work for a small company and they are starting to give me a bit of a hard time. I rarely call in sick, even though there are days I feel like I have been hit by a mack truck. I am the one who carries the insurance for my family, because my husbands work does not offer

insurance. I love my job and they love me, but I think somedays they do not understand what I am going through. I feel so much pressure to do a good job at work. Alot of times do not go to therapy because I know my work will get mad. How do you all balance work, surgeries, pt, and dr appts? I feel bad for letting my work down, but sometimes I have no choice. Then when I get back to work I get the guilt trip from a boss with no kids and no illnesses. I am a very frustrated working 39 year old mom. Thank you for listening. Any suggestions would be very appreciated! ! from Dallas, TX

[Guest guest]

-

Hi

if you start another group please let me know as well...I have learned so much

from you, I value your knowledge greately!

Its sad that our moderators are too busy to do the job effectively..and thus we

have issues that go unchecked for too long. Anyway..please do let me know if

you start another group.

thanks!

RN in DC

-- In spinal problems , Babbitt

<tpowell1977@...> wrote:

>

> of course Liz...I guess I should get on that. I've been thinking about wether

or not to keep it on or use another portal...any ideas?

>  --- Babbitt

>

>

>

>

> ________________________________

> From: lizmartin9 <lizmartin9@...>

> spinal problems

> Sent: Monday, September 7, 2009 4:57:24 PM

> Subject: Re: To Dave

>

>  

> Hi ,

> I've learned a lot from your posts. I would like to join the group that you

start. Please let me know what it's called.

> Thanks,

> Liz

> - In spinedisorderssuppo rtgroup@gro ups.com, " tpowell1977 " <tpowell1977@

....> wrote:

> >

> > I am going to be leaving and starting my own group so that it can actually

be moderated... but before I go I want to address something

> >

> > I have had strong feelings of protection of this group. Like I have said

before, I have been here a long time(more than 3 yrs) and have seen many folks

come though almost none had a personal agenda and caused any disruption.. .a

very rare few have commandeered the group with some silly power trip...but

lately there have been more in the last few months than combined the last three

years.

> >

> > I wanted to not run away from a group that is being threatened but since I

am not a moderator..I have no way to defend the group and save it from its

current course.

> >

> > So with that I will say to Dave that some of the things you've said to

people, advice you have given...is not only wrong...it borders on damaging. You

must think carefully before you advise somoeone especially when it comes to

medical advice. You need to listen more and talk less. Your advice is way off

base...and your criticizing, belittling and ostracizing of people on here is

what is endangering the group. YOU are keeping a thread of discord running

through the group. And WHy you seem to have gotten a little power trip here is

beyond my understanding. ..it's a SUPPORT GROUP. Please...get off your high

horse and do the group a favor...LEAVE.

> >

> > And for " Dr Bob " ...you know, I am a Christian too and even in your speech

about not bringing that agenda here...you sure managed to plant a few seeds

didn't you?

> >

> > And I am sure you have nothing but the best intentions, and I'm sure you

wholeheartedly care for your patients and want to help...but over the years I

have seen that most ALL chiros are overzealous in thinking they can " cure " just

about every disease or pain out there...and encouage people to run the other way

when surgery is advised...and there is SURELY a lot of times when people need to

avoid surgery...but just to let you know...HERE the people are well beyond the

help of a chiropractor. Just keep that in mind...the majority of the folks here

are like yourself and not just moaning about a herniated disk.

> > And as far as giving out advice...have fun. I have been involved here and

came not only for my own pain and needing to talk with others who knew the

problems I had dealt with...but also because my own personal/medical

experience.. .coupled with my professional experience of being a surgical nurse

with a specialty in spine surgery...I wanted to be able to share with others

what I felt priveledged to have learned...because precious few know the things

the docs never tell you. There are SOOOO many IMPORTANT things that people need

to know...and I was just like them, going with the flow and following along like

cattle in the medical system that I was helpless to navigate. And I did

help...many people. And it makes me feel like it was all worth it...the job that

I may never do again. It was all well and good...we all contributed to each

other and I learned many things from others...but there are certain people on

here who threaten those who actually know

> what they are talking about...they push and push and cause strife until you

run from it...because. ..above all...this group is about SUPPORT.

> >

>

>

>

>

>

>

>

>

[Guest guest]

LOL, Sue. I'm watching it right now with my son. I just asked him if

he ever read " One Flew Over the Cuckoo's Nest. "

Not an MD

On Mon, Sep 21, 2009 at 7:00 PM, marysue <marysue@...> wrote:

> ,

>

> Are you going to watch " House " in the nuthouse tonight? I'm going

> right now to see what the good doctor is up to now.

>

> Sue

[Guest guest]

It reminded me of that movie, too, LOL.

I think he's cured of his Vicodin addiction. But do you think his

other mental problems are better? I guess we'll see if he's still a

jerk. He might not be as interesting a character if he's not a jerk at

least part of the time.

Sue

On Sep 21, 2009, at 8:32 PM, wrote:

> LOL, Sue. I'm watching it right now with my son. I just asked him if

> he ever read " One Flew Over the Cuckoo's Nest. "

[Guest guest]

I think he'll still be a jerk, Sue.

Not an MD

On Mon, Sep 21, 2009 at 10:08 PM, marysue <marysue@...> wrote:

> It reminded me of that movie, too, LOL.

>

> I think he's cured of his Vicodin addiction. But do you think his

> other mental problems are better? I guess we'll see if he's still a

> jerk. He might not be as interesting a character if he's not a jerk at

> least part of the time.

>

> Sue

[Guest guest]

You think so? So the psychoanalysis didn't work? We'll have to wait

and see, I guess. I can't really imagine him not being a jerk, though.

Sue

On Sep 23, 2009, at 7:47 AM, wrote:

> I think he'll still be a jerk, Sue.

>

[Guest guest]

,

Good luck tomorrow....we will all be thinking about you and sending you very

good surgery and recovery wishes.

Take Care, Cam

[Guest guest]

Good luck , I'm praying for you.

D (RI)

>

> ,

>

> Good luck tomorrow....we will all be thinking about you and sending you very

good surgery and recovery wishes.

>

> Take Care, Cam

>

[Guest guest]

Hello ,

Having stiff, swollen and painful hands is a frightening thing to have happen. 

When I was first diagnosed with RA it was just my feet, knees and shoulders.

Then my elbows.  I have done the medication circuit and I just encourage you to

be patient with the medications and yourself.  It seems all of RA patients have

to find that certain cocktail of medications that works for them.  I was doing

really well on Humira and then all of a sudden I started ramping up the

symptoms.  After a short course of Orencia and then a failed course of Simponi,

I had hands I could not even breathe on they were so swollen and painful.  Being

a nurse manager, and an avid sewer/quilter I was in a true panic.  Remicade and

Methotrexate saved me.  Am I pain free? No.  However, I can do what I want right

now.  RA teaches you patience, that is for sure.  It took about three weeks for

my hands to feel normal - my normal.  All of us are different in how the

symptoms

flare and what cures us, but we are in that same boat sailing along.

Good luck to you and I pray you find relief soon in the medications.  Just keep

telling you doctor if things are getting worse instead of better so he/she may

consider something different.

Dale Ellen

[Guest guest]

I really hate that everyone here is hurting but it's nice having people to

converse with who understand.

My scariest day was the 1st time I woke up unable to walk. A very close 2nd was

my hand/wrist pain.

I work in a mail room and couldn't even grab a small bunch of envelopes.

Turning my key in the ignition and shifting into gear took 2 hands and a lot of

wincing. I hate how swollen and sore Prednisone makes me but I'll take that over

the alternative!

Hang in there!

Candace

Sent from my iPhone

On May 26, 2010, at 8:34 PM, Dale Ellen Ulrich <deulrich@...> wrote:

Hello ,

Having stiff, swollen and painful hands is a frightening thing to have happen.

[Guest guest]

Hi Candace....

Prednisone makes you swollen and sore?? It is supposed to actually relieve the

swelling and the soreness! I am in the middle of a flare and am not able to

take Humira because of upcoming surgery, so I have to take Prednisone...it has

actually saved me and always has when I was not able to take the Humira or was

just having a flare despite Humira (weather changes and stress do this to me).

Have you talked to your doc about this? Maybe get another opinion??

I hope you feel better!

Robin

>

> Hello ,

>

> Having stiff, swollen and painful hands is a frightening thing to have happen.

>

>

>

>

>

>

>

>

>