New here

[Guest guest]

Thanks for the tip. Can't wait! I will take some pictures before I go. Promise.

Burson

Pampered Chef

Independent Consultant

http://www.pamperedchef.biz/carrieb

[Dr-Aceves-bandster s] Re: New here @groups. comDate: Sunday, April 20, 2008, 9:15 PM

Penny,I too am having the procedure soon. I met w/ a couple of ladies today that have had this done. Something like a support group so questions could be asked and answered face to face. A few things that were mentioned at the meeting to take were:a heating pad to warm the stomach to help w/ gas painssome underwear liners for accidents that might occur (thought it was gas, but not really)lots of reading material, some extra cash, slip on shoes, extra undies, Hope this helps. I'll wait to see what else gets posted so I'll know more about what I need to take.>> Hi everyone! My name is Penny and I'm new here. I've been overweight

> since I was 10 years old. I've tried many times to loose weight- > sometimes succeeded, sometimes not- but the weight just kept > climbing. > I'm divorced, and a single mom with 4 children. I saw the > commercials for the lap band a year ago and have been thinking about > having the surgery. What finally made up my mind to have it done? I > lost my Dad 2 years ago from complications due to diabetes. He went > into renal failure. And this year my sister has been in and out of > the hospital because of cellulitis due to her diabetes. Plus her > kidney function is down too. I don't have diabetes yet- and I don't > want it! > I want to get healthy. I want to see my kids grow up. I want to > be able to play with them, and enjoy them while they're young.I've > decided to take control of my weight instead of letting it control me.> I started to

investigate the surgery, and found out that my insurence > doesn't cover WLS. I tried to get financing, and I got some, but not > enough for the US. I was about to give up. Then I received an email > from Dr. Aceves. I contacted them, and I'm soo glad that I did. They > have been wonderful!> I am having surgery on May 10th.I have no doubts or fears about > going down there for my surgery. I'm flying to San Diego from > Spokane, Wa. This will be the first time that I've been out of the > country. So this is a total adventure for me.> I'm excited that I'm getting the band, but not really nervous- > yet. (The night befor surgery I'll probably be a nervous wreck.)> I'm trying to figure out what I need to take with me to entertain > myself for the couple of days in the hospital before I come home.> (I'll be alone) Any suggestions? I love to read, so

I'll bring some > books, plus I'll probably bring some of my homework too. (I'm a > college student)> Does anyone have any suggestions for this, or about anything that > will make my recovery and flight home more comfortable? Thanks in > advance.> > Penny in Spokane> 285/277/130. ..someday>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hi, Penny. I was banded last Thursday. Are you going by yourself?

If so, the less you take the better. I wouldn't take any heavy text

books. I took one paperback, napped, and watched TV. I packed

extremely light even though by daughter went with me. I didn't need

the heating pad I took as they supplied one there, and the warmth was

very comforting. Couldn't get internet service in our room at the

hospital, but my daughter could connect in the lobby. I spent time

walking the halls, going outside to sit in the glorious sun, and made

sure I was in the lobby the day after my surgery around 2 PM to meet

the new folks coming in the van for fills and banding. Got lots of

advice and made new friends.

Best wishes. It was a great experience for me.

Debi in Portland

>

> Hi everyone! My name is Penny and I'm new here. I've been

overweight

> since I was 10 years old. I've tried many times to loose weight-

> sometimes succeeded, sometimes not- but the weight just kept

> climbing.

> I'm divorced, and a single mom with 4 children. I saw the

> commercials for the lap band a year ago and have been thinking

about

> having the surgery. What finally made up my mind to have it done? I

> lost my Dad 2 years ago from complications due to diabetes. He went

> into renal failure. And this year my sister has been in and out of

> the hospital because of cellulitis due to her diabetes. Plus her

> kidney function is down too. I don't have diabetes yet- and I don't

> want it!

> I want to get healthy. I want to see my kids grow up. I want to

> be able to play with them, and enjoy them while they're young.I've

> decided to take control of my weight instead of letting it control

me.

> I started to investigate the surgery, and found out that my

insurence

> doesn't cover WLS. I tried to get financing, and I got some, but

not

> enough for the US. I was about to give up. Then I received an email

> from Dr. Aceves. I contacted them, and I'm soo glad that I did.

They

> have been wonderful!

> I am having surgery on May 10th.I have no doubts or fears

about

> going down there for my surgery. I'm flying to San Diego from

> Spokane, Wa. This will be the first time that I've been out of the

> country. So this is a total adventure for me.

> I'm excited that I'm getting the band, but not really nervous-

> yet. (The night befor surgery I'll probably be a nervous wreck.)

> I'm trying to figure out what I need to take with me to

entertain

> myself for the couple of days in the hospital before I come home.

> (I'll be alone) Any suggestions? I love to read, so I'll bring some

> books, plus I'll probably bring some of my homework too. (I'm a

> college student)

> Does anyone have any suggestions for this, or about anything

that

> will make my recovery and flight home more comfortable? Thanks in

> advance.

>

> Penny in Spokane

> 285/277/130...someday

>

[Guest guest]

Welcome to the site, it is a mine of information. My advice is do as

much research as possible so you are sure you are making the right

decision.

Have you thought of hip resurfacing, it's a great option assuming

you are a candidate check out the link for the " surfacehippys at

surfacehippy/

Good Luck,

Bill.

>

> Hi, I would like to introduce myself, after reading the list for

about a

> week now.

>

> My name is Maddy, I am 60 (yikes how did THAT happen) and have

been living

> with a bum left hip for far too long.

> I finally started to think seriously about getting it replaced the

last

> few months.

> 3 years ago an orthpod said " it wasn't that bad " and I was too

young.

> Well it's quite a bit worse, but I have read of others here

getting a hip

> replaced with symptoms I had 3 years ago, so I guess that doc was

no

> good...

>

> I have a " narrowing of the superior aspect of the joint space " ,

and a

> " cyst in the subarticular portion of the adjacent acetabulum

superiorly "

> according to the 3 year old xrays. " No telling what it is like

now...

>

> I walk like Fred Sanford, I have to pick up my leg getting in and

out of a

> vehicle, and have a lot of trouble sleeping. I hang onto a

gracery cart

> for dear life when shopping, and it takes some time to straighten

up and

> start weight bearing after sitting.

>

> I fell off a tall haystack back in the late 70's and hurt my hip

then,

> although I never went to a doctor. A few years later I started

having

> trouble with it and just chalked it up to arthritis, as my mother

and

> grandmother both have it. I have limped on and off ever since,

but now it

> is just unbearable, and my right foot is hurting from doing " all

the work " .

>

> I have an appointment for May 14 to see a Dr. Russo in

sdale,

> Az. That is about 200 miles from home, but we live " out in the

boonies "

> so going to Phoenix really is necessary for anything major. Does

anyone

> here know Dr. Russo? Or have a doctor they really like in the

Phoenix

> area? We have United Healthcare, so I am limited to that.

>

> Dr Russo's website is

> http://www.orthodoc.aaos.org/affiliations2.cfm?webid=1400

>

> and some of his affiliations and accomplishments are as follows:

> Chairman, Rehabilitation Committee, Tempe St. Luke's Hospital

> Chairman, Orthopedic Division, sdale Memorial Hospital

Subcommittee

> Chairman, Surgery Committee, sdale Memorial Hospital

> President, Medical Staff, sdale Memorial Hospital-North

> Chairman, By-Laws Comm., sdale Memorial Hospital-North

> Secretary/Treasurer, sdale Memorial Hospital-North

> Community Organizations:

> Board of Directors, sdale Physicians' Hospital Organization

> Chairman, Credentials Committee, SMH PHO

> Advisory Committee, Paradise Valley High School Bio- Technology

Program

> County Organizations:

> Maricopa County Medical Society Board of Directors -Ex-Officio

> President, Maricopa County Chapter, Arizona Orthopaedic Society

>

> It seems like he wouldn't have time for surgery! but I think that

is all

> spread out over many years...my mother's neighbor had a knee

replaced by

> him and just swears by him.

>

> Anyway, he is the first appointment I have, to see what he says...

>

> I appreciate having this list resource, it really has helped to

read about

> all the good outcomes. I'm hoping if I am ready for a

replacement, to get

> metal on metal with the bigger head, from what I have been reading

this

> seems like the best way to go right now...am I right?

>

> Anyway, thanks for letting me talk to you all, hope I haven't

bored you

> with the long " epistle " .

>

> Oh, I also have a bucket handle tear of the lateral meniscus in my

left

> knee, but that's another story, haha...thankfully it doesn't hurt.

>

[Guest guest]

Hi Bill, yes, I have been reading about the

resurfacing. I can't find any doctors listed for

Arizona. I also just read that as many as 25% have

groin pain even 2 years out from surgery...

also I don't have recent xrays, so I don't know if my

hip is a candidate. If I go with THR I know I want the

MOM, as I am fairly active taking care of horses, goats,

pigs, chickens, ducks, guineas, dogs and cats daily.

Takes me about 45 minutes, twice a day, so I am not

completely a couch potato. I have to bend over a lot of

the time to get stuff off the ground, so I really want

that extra range of motion!

Right now I walk bent forward, and often this winter I

was just getting by with my feet spread way apart and

kind of rocking forward 6 inches at a time per foot.

Like you would walk a toy soldier.

I have rare times that I can almost walk normally for a

few minutes! Then I have to bend over, and the pain is

back.

For some weird reason my leg on my bad side is now about

1 inch longer than my good leg, but it never used to be!

Well, I think I've covered all the bases, you now know

me better than my doctor!

>

> Welcome to the site, it is a mine of information. My

advice is do as

> much research as possible so you are sure you are

making the right

> decision.

> Have you thought of hip resurfacing, it's a great

option assuming

> you are a candidate check out the link for the

" surfacehippys at

> surfacehippy/

> Good Luck,

> Bill.

>

[Guest guest]

Welcome Maddy...I went to your OS's website, and nowhere on the site

does he explain what kind of replacement and what prosthesis he uses.

I would definitely ask that question, even before going to the

appointment.

I'm 61, and 6 weeks out from my replacement. Except for some other

non related stuff, (flu, shoulder, etc), the hip is great! I'm

definitely walking better, much much much less pain;I think the pain I

am feeling is just what healing is about. I had the anterior approach

with a DePuy prosthesis, which I will find out tomorrow exactly which

one he put in. Shop around to find the right person for you, and your

well being.

Good luck, Lisel

>

> Hi, I would like to introduce myself, after reading the list for

about a

> week now.

>

> My name is Maddy, I am 60 (yikes how did THAT happen) and have been

living

> with a bum left hip for far too long.

> I finally started to think seriously about getting it replaced the

last

> few months.

> 3 years ago an orthpod said " it wasn't that bad " and I was too young.

> Well it's quite a bit worse, but I have read of others here getting

a hip

> replaced with symptoms I had 3 years ago, so I guess that doc was no

> good...

>

> I have a " narrowing of the superior aspect of the joint space " , and a

> " cyst in the subarticular portion of the adjacent acetabulum

superiorly "

> according to the 3 year old xrays. " No telling what it is like now...

>

> I walk like Fred Sanford, I have to pick up my leg getting in and

out of a

> vehicle, and have a lot of trouble sleeping. I hang onto a gracery

cart

> for dear life when shopping, and it takes some time to straighten up

and

> start weight bearing after sitting.

>

> I fell off a tall haystack back in the late 70's and hurt my hip then,

> although I never went to a doctor. A few years later I started having

> trouble with it and just chalked it up to arthritis, as my mother and

> grandmother both have it. I have limped on and off ever since, but

now it

> is just unbearable, and my right foot is hurting from doing " all the

work " .

>

> I have an appointment for May 14 to see a Dr. Russo in

sdale,

> Az. That is about 200 miles from home, but we live " out in the

boonies "

> so going to Phoenix really is necessary for anything major. Does

anyone

> here know Dr. Russo? Or have a doctor they really like in the Phoenix

> area? We have United Healthcare, so I am limited to that.

>

> Dr Russo's website is

> http://www.orthodoc.aaos.org/affiliations2.cfm?webid=1400

>

> and some of his affiliations and accomplishments are as follows:

> Chairman, Rehabilitation Committee, Tempe St. Luke's Hospital

> Chairman, Orthopedic Division, sdale Memorial Hospital Subcommittee

> Chairman, Surgery Committee, sdale Memorial Hospital

> President, Medical Staff, sdale Memorial Hospital-North

> Chairman, By-Laws Comm., sdale Memorial Hospital-North

> Secretary/Treasurer, sdale Memorial Hospital-North

> Community Organizations:

> Board of Directors, sdale Physicians' Hospital Organization

> Chairman, Credentials Committee, SMH PHO

> Advisory Committee, Paradise Valley High School Bio- Technology Program

> County Organizations:

> Maricopa County Medical Society Board of Directors -Ex-Officio

> President, Maricopa County Chapter, Arizona Orthopaedic Society

>

> It seems like he wouldn't have time for surgery! but I think that is

all

> spread out over many years...my mother's neighbor had a knee

replaced by

> him and just swears by him.

>

> Anyway, he is the first appointment I have, to see what he says...

>

> I appreciate having this list resource, it really has helped to read

about

> all the good outcomes. I'm hoping if I am ready for a replacement,

to get

> metal on metal with the bigger head, from what I have been reading

this

> seems like the best way to go right now...am I right?

>

> Anyway, thanks for letting me talk to you all, hope I haven't bored

you

> with the long " epistle " .

>

> Oh, I also have a bucket handle tear of the lateral meniscus in my

left

> knee, but that's another story, haha...thankfully it doesn't hurt.

>

[Guest guest]

I would demand a second opinion. My son has had problems for years and now at 6 they found the c-toma. He had been seen for bleeding from his ear and I was told that he had more than likely put something in his ear that made it bleed. It had to get so infected that it smelled like a dogs butt before we got refered to an ENT. He told us it was a c-toma as soon as he got the infection cleared up. Don't wait get her to another doctor. Search cholesteatoma with your search engine there are some bad side effects of having one. Good Luck you and your daughter will be in my prayers.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

The way the ENT explained it to me was that when the ear is infected,

the c-toma cannot be seen. We were only diagnosed because we couldn't

get in to the ENT for months and by then she was healthy and I almost

cancelled the appointment. She was 3 and kept saying that she had a

dinosaur in her ear............

Best of luck to you.

Melinda W. Lindberg

Ray Trucking

864-277-5234

New here

I joined this group today to get some information. My daughter is 20

years old, though she has a syndrome, (Cornelia de Lange Syndrome) which

makes her very small.....about the size of a 5 year old. She has

numerous other health issues, but also a long history of ear infections

and many, many sets of ear tubes. In January her ENT took her to surgery

to replace her right ear tube and told me at that time that she had some

granulation tissue in her middle ear. He cleaned it all out and replaced

the tube. Fast forward to March when her ear started bleeding. I called

her ENT and even though I was insistent with the office staff that she

needed to be seen, they gave her an appt about two weeks out. Within a

couple of days she started laying down a lot, and then started retching

and gagging. She is non-verbal so she can't tell me how she's feeling.

Also, she has a gastrostomy tube and is unable to vomit, but clearly she

was sick to her stomach. Her infectious disease doctor decided to put

her on IV antibiotics because her white count was up. A week and a half

later, her white count had climbed even higher, so he admitted her to

the hospital. During that time I had been frantically trying to get her

ENT to come and see her but it was a weekend, and he didn't show up

until Tuesday. Meanwhile she was still lying down a lot, wouldn't eat

anything by mouth, gagged when we gave her a tube feeding. They thought

she may have pancreatitis or hepatitis. When the ENT finally took her to

surgery, he said her ear was a real mess. He said he removed polyps,

granulation tissue, fluid, and he said it was very red and inflamed,

though didn't look infected at that point, (after the IV antibiotics). I

was really scared all during the week she was in the hospital because

she was acting so lethargic. They talked about doing a lumbar puncture

on her to see if she had meningitis. I remember asking several times if

maybe she could be dizzy. After the ENT went in, he said he felt that

what he found could explain all her symptoms. Today she saw her

pediatrician and she asked me if the ENT had ever mentioned the word

cholesteatoma. No, he hasn't but I'm wondering if this is what she has??

I do now believe that she was lying down all the time and gagging

because she was dizzy. She's finally back to her old self. It took a

whole month before she was better, and the ENT is watching the ear

closely, but I'm wondering if she has a c-toma, and if so wouldn't he

have known that's what it was? Or is it something that has to be

confirmed by biopsy? He didn't use that term with me, but I will be

asking him if this is what she has. I'm curious if anyone has had a

similar experience? Thank you for your help!!

Belinda

Mother of Lacey, (20, CdLS, immune deficient, multiple ear tubes and

frequent infections) Oakley, CA

________________________________

Need a new ride? Check out the largest site for U.S. used car listings

at AOL Autos <http://autos.aol.com/used?NCID=aolcmp00300000002851> .

[Guest guest]

My son has also had many of the same problems that your daughter has had. He was a preemie (2lbs. 7ozs. ) which accounted for what we thought were just small drainage tubes. He had ear infections for years and saw the same ENT which operated a total of 5 times on my son in 6 years, never even mentioning the word cholesteatoma to me. My son also had to see an infectious disease dr for his elevated SED count (3 times the normal ) but after dozens of tests and no answers we finally moved on. After a 1 year constant infection and off antibiotics for less than 2 weeks at a time, and the significant hearing loss we changed drs. At first look he was diagnosed with a c-toma. within the week he was scheduled for surgery, that was dec 07. Even though he has no hearing out of his left ear we are so blessed that it was found when it was. 2 1/2 of his 3 bones were gone by the time they found it and my child had to go through excruciating pain for so many years. I so

regret not acting sooner. Please find a dr who has vast experience with c-tomas and get her checked. Best of Luck Athena HubbertLacey449@... wrote: I joined this group today to get some information. My daughter is 20 years old, though she has a syndrome, (Cornelia de Lange Syndrome) which makes her very small.....about the size of a 5 year old. She has numerous other health issues, but also a long history of ear infections and many, many sets of ear tubes. In

January her ENT took her to surgery to replace her right ear tube and told me at that time that she had some granulation tissue in her middle ear. He cleaned it all out and replaced the tube. Fast forward to March when her ear started bleeding. I called her ENT and even though I was insistent with the office staff that she needed to be seen, they gave her an appt about two weeks out. Within a couple of days she started laying down a lot, and then started retching and gagging. She is non-verbal so she can't tell me how she's feeling. Also, she has a gastrostomy tube and is unable to vomit, but clearly she was sick to her stomach. Her infectious disease doctor decided to put her on IV antibiotics because her white count was up. A week and a half later, her white count had climbed even higher, so he admitted her to the hospital. During that time I had been frantically trying to get her ENT to come and see her but it was a weekend, and he didn't show up until

Tuesday. Meanwhile she was still lying down a lot, wouldn't eat anything by mouth, gagged when we gave her a tube feeding. They thought she may have pancreatitis or hepatitis. When the ENT finally took her to surgery, he said her ear was a real mess. He said he removed polyps, granulation tissue, fluid, and he said it was very red and inflamed, though didn't look infected at that point, (after the IV antibiotics). I was really scared all during the week she was in the hospital because she was acting so lethargic. They talked about doing a lumbar puncture on her to see if she had meningitis. I remember asking several times if maybe she could be dizzy. After the ENT went in, he said he felt that what he found could explain all her symptoms. Today she saw her pediatrician and she asked me if the ENT had ever mentioned the word cholesteatoma. No, he hasn't but I'm wondering if this is what she has?? I do now believe that she was lying down all the time and gagging

because she was dizzy. She's finally back to her old self. It took a whole month before she was better, and the ENT is watching the ear closely, but I'm wondering if she has a c-toma, and if so wouldn't he have known that's what it was? Or is it something that has to be confirmed by biopsy? He didn't use that term with me, but I will be asking him if this is what she has. I'm curious if anyone has had a similar experience? Thank you for your help!! Belinda Mother of Lacey, (20, CdLS, immune deficient, multiple ear tubes and frequent infections) Oakley, CA Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

and Athena~~

Thank you for responding to my questions. I called Lacey's ENT today but it didn't seem like he was going to get back to me so I called the pediatrician and had her call and talk to him. I got a phone call from the ENT's office staff to say, "The doctor said no, it wasn't a cholesteatoma, but he's on the other line with her doctor". I haven't talked to either one of them now so I don't know what they discussed, but I did tell the pediatrician today that maybe this goes beyond his area of expertise and maybe it's time for a second opinion. Interestingly, I looked on the website which has information about my daughter's syndrome and it says that they can get cholesteatomas, and also that parents should seek an ENT who has experience with infants or kids with syndromes who have very narrow ear canals, (which she does). Her ENT is not even a pediatric specialist, so maybe it's time for a second opinion!

Belinda

Mom to Lacey, (20, CdLS, immune deficiency)

Oakley, CANeed a new ride? Check out the largest site for U.S. used car listings at AOL Autos.

[Guest guest]

That's an interesting description ... " She was 3 and kept saying that

she had a dinosaur in her ear........ " I had an awful buzzing noise in

my ear before the hearing went. Maybe it did sound like a dinosaur roaring!

Matt

Melinda Lindberg wrote:

>

> The way the ENT explained it to me was that when the ear is infected,

> the c-toma cannot be seen. We were only diagnosed because we couldn't

> get in to the ENT for months and by then she was healthy and I almost

> cancelled the appointment. She was 3 and kept saying that she had a

> dinosaur in her ear............

> Best of luck to you.

>

> Melinda W. Lindberg

> Ray Trucking

> 864-277-5234

>

> New here

>

> I joined this group today to get some information. My daughter is 20

> years old, though she has a syndrome, (Cornelia de Lange Syndrome) which

> makes her very small.....about the size of a 5 year old. She has

> numerous other health issues, but also a long history of ear infections

> and many, many sets of ear tubes. In January her ENT took her to surgery

> to replace her right ear tube and told me at that time that she had some

> granulation tissue in her middle ear. He cleaned it all out and replaced

> the tube. Fast forward to March when her ear started bleeding. I called

> her ENT and even though I was insistent with the office staff that she

> needed to be seen, they gave her an appt about two weeks out. Within a

> couple of days she started laying down a lot, and then started retching

> and gagging. She is non-verbal so she can't tell me how she's feeling.

> Also, she has a gastrostomy tube and is unable to vomit, but clearly she

> was sick to her stomach. Her infectious disease doctor decided to put

> her on IV antibiotics because her white count was up. A week and a half

> later, her white count had climbed even higher, so he admitted her to

> the hospital. During that time I had been frantically trying to get her

> ENT to come and see her but it was a weekend, and he didn't show up

> until Tuesday. Meanwhile she was still lying down a lot, wouldn't eat

> anything by mouth, gagged when we gave her a tube feeding. They thought

> she may have pancreatitis or hepatitis. When the ENT finally took her to

> surgery, he said her ear was a real mess. He said he removed polyps,

> granulation tissue, fluid, and he said it was very red and inflamed,

> though didn't look infected at that point, (after the IV antibiotics). I

> was really scared all during the week she was in the hospital because

> she was acting so lethargic. They talked about doing a lumbar puncture

> on her to see if she had meningitis. I remember asking several times if

> maybe she could be dizzy. After the ENT went in, he said he felt that

> what he found could explain all her symptoms. Today she saw her

> pediatrician and she asked me if the ENT had ever mentioned the word

> cholesteatoma. No, he hasn't but I'm wondering if this is what she has??

> I do now believe that she was lying down all the time and gagging

> because she was dizzy. She's finally back to her old self. It took a

> whole month before she was better, and the ENT is watching the ear

> closely, but I'm wondering if she has a c-toma, and if so wouldn't he

> have known that's what it was? Or is it something that has to be

> confirmed by biopsy? He didn't use that term with me, but I will be

> asking him if this is what she has. I'm curious if anyone has had a

> similar experience? Thank you for your help!!

>

> Belinda

> Mother of Lacey, (20, CdLS, immune deficient, multiple ear tubes and

> frequent infections) Oakley, CA

>

> ________________________________

>

> Need a new ride? Check out the largest site for U.S. used car listings

> at AOL Autos <http://autos.aol.com/used?NCID=aolcmp00300000002851

> <http://autos.aol.com/used?NCID=aolcmp00300000002851>> .

>

>

--

[Guest guest]

For all

I am surprised that how diagnosis of C-toma is delayed in a developed country which is leader of the world in health science.

There is some thing wrong in the health delivery system, what I feel is that family physician are reluctant to refer to ENT Surgeon fro opinion. May be due to Insurance companies pressure on Family Physicians for less and less referrals. Is this the reason? Or the less training to Family Physician about this disease entity?

Dr. Arun (ENT Surgeon-India)

On 4/24/08, Athena Hubbert <athenahubbert@...> wrote:

My son has also had many of the same problems that your daughter has had. He was a preemie (2lbs. 7ozs. ) which accounted for what we thought were just small drainage tubes. He had ear infections for years and saw the same ENT which operated a total of 5 times on my son in 6 years, never even mentioning the word cholesteatoma to me. My son also had to see an infectious disease dr for his elevated SED count (3 times the normal ) but after dozens of tests and no answers we finally moved on. After a 1 year constant infection and off antibiotics for less than 2 weeks at a time, and the significant hearing loss we changed drs. At first look he was diagnosed with a c-toma. within the week he was scheduled for surgery, that was dec 07. Even though he has no hearing out of his left ear we are so blessed that it was found when it was. 2 1/2 of his 3 bones were gone by the time they found it and my child had to go through excruciating pain for so many years. I so regret not acting sooner. Please find a dr who has vast experience with c-tomas and get her checked. Best of Luck

Athena HubbertLacey449@... wrote:

I joined this group today to get some information. My daughter is 20 years old, though she has a syndrome, (Cornelia de Lange Syndrome) which makes her very small.....about the size of a 5 year old. She has numerous other health issues, but also a long history of ear infections and many, many sets of ear tubes. In January her ENT took her to surgery to replace her right ear tube and told me at that time that she had some granulation tissue in her middle ear. He cleaned it all out and replaced the tube. Fast forward to March when her ear started bleeding. I called her ENT and even though I was insistent with the office staff that she needed to be seen, they gave her an appt about two weeks out. Within a couple of days she started laying down a lot, and then started retching and gagging. She is non-verbal so she can't tell me how she's feeling. Also, she has a gastrostomy tube and is unable to vomit, but clearly she was sick to her stomach. Her infectious disease doctor decided to put her on IV antibiotics because her white count was up. A week and a half later, her white count had climbed even higher, so he admitted her to the hospital. During that time I had been frantically trying to get her ENT to come and see her but it was a weekend, and he didn't show up until Tuesday. Meanwhile she was still lying down a lot, wouldn't eat anything by mouth, gagged when we gave her a tube feeding. They thought she may have pancreatitis or hepatitis. When the ENT finally took her to surgery, he said her ear was a real mess. He said he removed polyps, granulation tissue, fluid, and he said it was very red and inflamed, though didn't look infected at that point, (after the IV antibiotics). I was really scared all during the week she was in the hospital because she was acting so lethargic. They talked about doing a lumbar puncture on her to see if she had meningitis. I remember asking several times if maybe she could be dizzy. After the ENT went in, he said he felt that what he found could explain all her symptoms. Today she saw her pediatrician and she asked me if the ENT had ever mentioned the word cholesteatoma. No, he hasn't but I'm wondering if this is what she has?? I do now believe that she was lying down all the time and gagging because she was dizzy. She's finally back to her old self. It took a whole month before she was better, and the ENT is watching the ear closely, but I'm wondering if she has a c-toma, and if so wouldn't he have known that's what it was? Or is it something that has to be confirmed by biopsy? He didn't use that term with me, but I will be asking him if this is what she has. I'm curious if anyone has had a similar experience? Thank you for your help!!

Belinda

Mother of Lacey, (20, CdLS, immune deficient, multiple ear tubes and frequent infections)

Oakley, CA

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[Guest guest]

While I am only speaking for myself, my experience has been - some

doctors truly care about their patients and others only care about the

prestige they get from being a doctor.

My husband has suffered with CT and other related inner/middle ear

issues for going on 21 yrs. Part of the problem was the initial battle

to get his medical records after he separated from the AF, the next

battle was convincing the right people in the long chain of

administation to get him to the right doctors....we are finally only a

month out from his upcoming surgery after battling the system for nearly

5 yrs.

Dr Guptu - it's refreshing to get not just a professional opinion out

here, but to see how dedicated you are to your patients and their needs.

I look forward to your answers and have learned quite a bit since you

came on board.

Athena & Belinda, I would be looking for a new doctor and send this one

a finely tuned letter addressing you concerns and

dissatisfaction....with your daughter & sons health issues as they are,

the doctor should have put they're medical needs first and

foremost......Good luck....and I hope your daughter gets well....

As I stated above there seems to be two (or more) mindsets

here....Insurance is often a driving factor, but most of my experience

has been the attitude of the attending doctor....I had to make my

husbands specialist sit down and listen to us and why we felt my husband

needed this surgery. Now according to this drs peers he's the best in

his field so we're going to hold him to that standard. His train of

thought was that could hold out for a few more months and that we

only wanted his hearing restored....'s lived with this loss level

of hearing for yrs so we're used to it and have conditioned ourselves

for continued loss of hearing.....OUR real reasons for pushing for the

surgery is to reduce and/or eliminate the constant pain deep within his

ear......he's experienced facial numbness, constant migraines & loss of

appetite....I know that after this surgery most of these will go away -

they always have in the past.

My main point here is that doctors in this country need to get out of

the books and stop thinking they have all the answers and get back in

the mode of actually listening to the patients and accept the fact that

we as a total population don't have all the answers......Administrators

& insurance companies need to stop dictating what we do and do not need

for medical care. And finally, we as both patients and caregivers have

to demand - if need be- that our loved ones get the medical care they

really need and not what gets everyone by.....

I thank everyone out here for not just sharing their stories, but also

giving me daily food for thought.....imagine if just a few more ENT's,

and other ear specialists would actually read this message board for

what it's worth - how much more they would know....

Thanks to All and Blessings to All ----

> >

> > I joined this group today to get some information. My daughter is 20

> > years old, though she has a syndrome, (Cornelia de Lange Syndrome)

which

> > makes her very small.....about the size of a 5 year old. She has

numerous

> > other health issues, but also a long history of ear infections and

many,

> > many sets of ear tubes. In January her ENT took her to surgery to

replace

> > her right ear tube and told me at that time that she had some

granulation

> > tissue in her middle ear. He cleaned it all out and replaced the

tube. Fast

> > forward to March when her ear started bleeding. I called her ENT and

even

> > though I was insistent with the office staff that she needed to be

seen,

> > they gave her an appt about two weeks out. Within a couple of days

she

> > started laying down a lot, and then started retching and gagging.

She is

> > non-verbal so she can't tell me how she's feeling. Also, she has a

> > gastrostomy tube and is unable to vomit, but clearly she was sick to

her

> > stomach. Her infectious disease doctor decided to put her on IV

antibiotics

> > because her white count was up. A week and a half later, her white

count had

> > climbed even higher, so he admitted her to the hospital. During that

time I

> > had been frantically trying to get her ENT to come and see her but

it was a

> > weekend, and he didn't show up until Tuesday. Meanwhile she was

still lying

> > down a lot, wouldn't eat anything by mouth, gagged when we gave her

a tube

> > feeding. They thought she may have pancreatitis or hepatitis. When

the ENT

> > finally took her to surgery, he said her ear was a real mess. He

said he

> > removed polyps, granulation tissue, fluid, and he said it was very

red and

> > inflamed, though didn't look infected at that point, (after the IV

> > antibiotics). I was really scared all during the week she was in the

> > hospital because she was acting so lethargic. They talked about

doing a

> > lumbar puncture on her to see if she had meningitis. I remember

asking

> > several times if maybe she could be dizzy. After the ENT went in, he

said he

> > felt that what he found could explain all her symptoms. Today she

saw her

> > pediatrician and she asked me if the ENT had ever mentioned the word

> > cholesteatoma. No, he hasn't but I'm wondering if this is what she

has?? I

> > do now believe that she was lying down all the time and gagging

because she

> > was dizzy. She's finally back to her old self. It took a whole month

before

> > she was better, and the ENT is watching the ear closely, but I'm

wondering

> > if she has a c-toma, and if so wouldn't he have known that's what it

was? Or

> > is it something that has to be confirmed by biopsy? He didn't use

that term

> > with me, but I will be asking him if this is what she has. I'm

curious if

> > anyone has had a similar experience? Thank you for your help!!

> >

> > Belinda

> > Mother of Lacey, (20, CdLS, immune deficient, multiple ear tubes and

> > frequent infections)

> > Oakley, CA

> >

> >

> >

> > ------------------------------

> > Need a new ride? Check out the largest site for U.S. used car

listings at AOL

> > Autos <http://autos.aol.com/used?NCID=aolcmp00300000002851>.

> >

> >

> > ------------------------------

> > Be a better friend, newshound, and know-it-all with Mobile.

Try it

> >

now.<http://us.rd./evt=51733/*http://mobile./;_ylt=Ahu\

06i62sR8HDtDypao8Wcj9tAcJ>

> >

> >

> >

>

[Guest guest]

I have to agree. My son use to tell us that he had bugs in his ears. Wish I had paid it more attention. But who would guess that at 3 and 4 he realy ment it. May 7th he goes for his first surgery. Dr says it's "big".

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hi Val(2) -I am calling your Val(2) because we have a very long standing Val who has been a member here for about 4 years, and I don't want us to mix the two of you up. When you sign messages, write 'Val(2) or 'Val2'

Hi All,I'm new here and cannot believe that on this website,I no longer feel Nuts,weird or a hypochondriac.

Certainly, I think the majority of us have felt nuts, weird and a hypochondriac and many other things too. I hope you get all the help and support that you need here.

I've had several episodes of what has been diagnosed as depression.I've been off work for 4 months.I was exhausted,sleeping for hours and unable to wake up,cold hands and feet,and I ached mostly neck,shoulders,back,hips and feet.I was also very emotional.All my tests came back in normal range.

Trouble is that doctors don't realise that for a majority of cases, patients get symptoms and all the signs of hypothyroidism, long before their blood results go outside of the reference range. The TSH range is FAR too wide in the UK and we are trying to prove to the medical profession that this should be narrowed, as it has been in the USA, Germany, Australia and other countries, when they realised they were missing tens of thousands of patients (millions in the USA) of people who were hypothyroid.

My paternal grandfather and uncle both suffered from hyperactive thyroid.My grandmother and great aunt suffered from underactive thyroid.I've suffered from hormonal problems for years and have IBS.My mum also has fibromyalgia

Has your doctor tested your blood to see if you have antibodies to your thyroid. It is quite likely that you do with so many of your family having this problem. having antibodies means you have Hashimoto's disease, and the antibodies set about destroying your thyroid gland, and this is the reason you are unable to put out the thyroid hormones your body needs. Do your family have other autoimmune problems. Did your doctor even ask you this question?

My mood has lifted and i really want to get back to work,which was unthinkable even a month ago,as my thought processes were so slowed up.However though the anti-depressants have lifted my mood,and helped me get some concentration back,i'm far from back to my usual self.I'm normally full of fun and quite bubbly.

I doubt you are 'depressed' in the true sense of the word - when anybody is hypothyroid and they are not converting thyroxione to T3 through the liver (T3 is needed to get into every cell in the body to make it function and also, it needs to get through the brain barrier to make your brain function too. Without this, you get short term memory and brain fog and the symptoms lead to depression, but once you are treated with thyroid hormones, and your brain starts to get sufficient T3 again, your brain will work fine, and you will not be depressed. Your Mother is probably suffering with fibromyalgia because she too is not converting to t3 and she needs T3 to sort out her pain. If your local laboratory doesn't test Free T3, you can get this done through NPTech Services (go to the FILES on our forum and scroll down until you see this document.

GP won't look at any other diagnosis,though i feel there's more to this than depression.I'm a psychiatric nurse so need to get back to work soon,but need to be much more alert than this.Any advice from anyone would be gratefully accepted.

Write down all your symptoms and signs (go to our website www.tpa-ukorg.uk and click on 'Hypothyroidism' and then click on symptoms and signs, and check off yours against these. Tell your GP you want a referral to a specialist in thyroid disorders (you can choose your own). Tell him if he doesn't refer you, you need to know why in writing. They don't like writing such things down, you might be right, and then it is there in writing and that makes it hard for him to answer if he is brought up about it.

Read everything you can in the website and in our FILES. Ask questions whenever you wish, somebody will be around to attempt a response.

Luv - Sheila

Val

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.5/1400 - Release Date: 27/04/2008 09:39

[Guest guest]

Hi there Val2 and welcome

Spend as much time here as you can, especially going thru the files

which have some great info.

When you can, post your last blood tests with (ranges) - I used to

accept the 'normal' statement from the docs when they tested my

thyroid and went on a wild goose chase looking for answers until I

found out that 'normal aint normal' and the ranges are too wide.

jennyfreeman (cos we got a few jenny's as well -lol)

>

> Hi All,

> I'm new here and cannot believe that on this website,I no longer

> feel Nuts,weird or a hypochondriac.

> I've had several episodes of what has been diagnosed as

> depression.I've been off work for 4 months.I was exhausted,sleeping

> for hours and unable to wake up,cold hands and feet,and I ached

> mostly neck,shoulders,back,hips and feet.I was also very

> emotional.All my tests came back in normal range.

> My paternal grandfather and uncle both suffered

>

[Guest guest]

Welcome Val,

I couldn't believe this website either when I found it. You ARE in

good hands now.

Penny x

[Guest guest]

I have been cancer free for 1 1/2 years. I currently am taking 2 1/2

grains of Armour. I take no other meds. Which I know needs to change.

Tabitha

[Guest guest]

Well first of all where is your TSH? As a thyca patient it needs to be at

0.1 or below. But more importantly you need to have your Free T3 & Free T4

in the upper end of the range. How are you feeling? I take 4 grains and

have for 2 1/2 years.

Steph

Re: New here

> Yes, I had a total thyroidectomy in June 2006. I was on Synthroid till

> February. After reading at the STTM site, I asked to change.

> In February, I was put on 1 grain, for about 6 weeks!!! I had to fight

> to see the doctor. (otolaryngogolist) She just wanted to up my dose to

> 1 1/2 grains and see me in 6 weeks.

> I knew that was wrong so I called my family doctor. She got me right

> in!! She took me up to 2 grains and then told me to see her back in a

> month. She was more worried about my hypo issues than anything. I

> know I need to fight for tests... I think it would just help if I was

> educated so I could help explain to the doctor, why I want what I want.

> Sorry for the long history

> Tabitha

>

>

> ------------------------------------

>

>

>

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>

[Guest guest]

I forgot to mention due to the low dose of Armour, my TSH was over

100. I was on the 2grains for 2 weeks and started on the 2 1/2grains

today. I am a mother of two very energetic boys, I just want my health

back.

[Guest guest]

I am starting to feel a tad better. But my TSH was HIGH!!!! I am now

learning what else I should on, and what test I should be taking.

Tabitha

[Guest guest]

You need to get it up fast. I went from 2 gr to 4 grains in 3 1/2 mos. You

need to be assertive.

Re: New here

>I forgot to mention due to the low dose of Armour, my TSH was over

> 100. I was on the 2grains for 2 weeks and started on the 2 1/2grains

> today. I am a mother of two very energetic boys, I just want my health

> back.

>

>

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>

>

>

>

>

[Guest guest]

Did you self dose?

Tabitha

[Guest guest]

Have you read www.stopthethyroidmadness.com ? That is a great starting

place! You can even buy the book now.

Another issue you may have is adrenal problems and hormonal imbalance. I've

talked to several thycans who have gone through problems in both of these

areas. You can order your own tests, too. That info is on the adrenal page

of STTM. I recommend ZRT, and I think does, too. I just had mine

done and found out I have major hormonal imbalance and cortisol issues.

It's good to know so you can fix the problem and be normal again:)

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

>I am starting to feel a tad better. But my TSH was HIGH!!!! I am now

> learning what else I should on, and what test I should be taking.

> Tabitha

>

>

> ------------------------------------

[Guest guest]

and I are right there with you. But what counts is NOW. You can

control and learn and gain your life back.

New here

> The more I learn, the more mad I get that NO ONE told me about this

> sooner. I let the doctors just tell me everything was going to be

> okay. I now know that was hogwash . . .

> Tabitha

>

>

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>

>

>

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>

[Guest guest]

Yes I do. You can get ZRT from www.canaryclub.org or the tests on

www.vrp.com are good as well.

Steph

Re: Re: New here

> Have you read www.stopthethyroidmadness.com ? That is a great starting

> place! You can even buy the book now.

>

> Another issue you may have is adrenal problems and hormonal imbalance.

> I've

> talked to several thycans who have gone through problems in both of these

> areas. You can order your own tests, too. That info is on the adrenal

> page

> of STTM. I recommend ZRT, and I think does, too. I just had

> mine

> done and found out I have major hormonal imbalance and cortisol issues.

> It's good to know so you can fix the problem and be normal again:)

>

>

> ----- Original Message -----

>

>

>

>>I am starting to feel a tad better. But my TSH was HIGH!!!! I am now

>> learning what else I should on, and what test I should be taking.

>> Tabitha

>>

>>

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