new to group

[Guest guest]

thanks,

i'm calling them right now!

didi

new to group> > > --hi, > > i'm new to this group as well. i was wondering if any one has had any experience in the new york area with doctors. i've just started looking aroung for an ent for my son . i dont know if i should use a pediatric ent or just a regular one. i just want to find someone who is very experienced with the surgery.any info would be really appreciated.> > didi--- > >

[Guest guest]

In a message dated 12/19/2002 10:16:52 AM Eastern Standard Time,

snacks@... writes:

> pediatric otologist. why do you think its better tha a

> regular otologist?

Hello Didi. Actually, a regular otologist would probably be fine, & often they

do both adults & kids, but a pediatric otologist would be more

experienced/specialize in children's smaller ears & heads. Pediatric

cholesteatoma is more likely to be of the congenital (born with it) variety than

acquired (it grew due to faulty eustachian tube function or other cause)

cholesteatoma. Children have a considerably higher recurrence rate than adults -

I just read recently that in children the disease tends to be more aggressive

BUT of shorter duration, & a pediatric specialist might be more geared to that.

If you find a non-pediatric otologist that you are comfortable with, great. But

if you are starting from scratch, I'd (in my humble opinion!) start with the

doctor whose life work most closely matched my child's needs. Best of luck.

[Guest guest]

-thanks rachel,

i will be interviewing a few doctors both pediatric and not. when i talk to the pediatrician , he says i should definitely go with a ped. ent and when i talk to a regualr ent , he says i should defintiely go with an adult ent or otologist! i'm really coinfused. i just want to go with someone who has alot of experience doing these, hopefully positive experience at that!

didi

i ---- Original Message -----

From: rlockw1092@...

cholesteatoma

Sent: Friday, December 20, 2002 2:33 PM

Subject: Re: new to group

In a message dated 12/19/2002 10:16:52 AM Eastern Standard Time, snacks@... writes:> pediatric otologist. why do you think its better tha a > regular otologist?Hello Didi. Actually, a regular otologist would probably be fine, & often they do both adults & kids, but a pediatric otologist would be more experienced/specialize in children's smaller ears & heads. Pediatric cholesteatoma is more likely to be of the congenital (born with it) variety than acquired (it grew due to faulty eustachian tube function or other cause) cholesteatoma. Children have a considerably higher recurrence rate than adults - I just read recently that in children the disease tends to be more aggressive BUT of shorter duration, & a pediatric specialist might be more geared to that. If you find a non-pediatric otologist that you are comfortable with, great. But if you are starting from scratch, I'd (in my humble opinion!) start with the doctor whose life work most closely matched my child's needs. Best of luck.

[Guest guest]

,

Welcome to the group. So sorry about your problems and the risk to your good ear. I think all of us can understand how frightening it is that this monster would invade your good ear. I hope it's not true. I've learned a lot from the discussions in this group. My 10 year old son, Dan will undergo his third c-toma operation Feb 21 with yet another reconstruction to follow in 6mos-1 year. We can only hope that it is nabbed this time, for good.

Best of luck and hang tough. Keep us informed.

New to group

Well I did not know there were so many people out there with this ear problem, approx 2 years ago i had an operation to remove the infection and unfortunately i lost total hearing and my facial nerve was damaged, today i was informed by my doctor that my good ear is also now at risk of having to be operated on, I am now very nervous that the same thing could happen to my only good ear.I will keep reading all of the other e-mails and hopefully every thing will be O.K. For any one else that has to have surgery good luck. I look forward to discussing further with you all.

[Guest guest]

Jasmine,

If I were you, I would find an Otologist/Neurologist for your husband and get another opinion. An otologist specializes in the ear only and the nerves around the ear. It sounds like your husband has some complicated issues and an ENT is just not specialized enough. Where do you live? Maybe we, on this forum, could help you find one.

My son has a reoccuring c-toma and he was going to an ENT and now he's seeing an otologist. He is receiving much better care. I regret not going to an otologist to begin with. To the ENT's credit, he's the one who sent him to the otologist. Otologists are definetely the better place for all of us. Let us know, we can help.

New to group

My husband had a ctoma removed three years ago. This left ear now has avery wide open canal, which can be seen right into, and it needs to becleaned out every 6 weeks still.The doctor at the time restructured an inner ear bone (the middle one hadbeen eroded), to help him to hear again. This inner ear bone had been"made" from the cartlidge from his outer ear. His ctoma was quiteprogressed, to the stage where he could not hear, had signs of paralysis inhis face, and the infection had actually started to eat at the lining of hisbrain.The operation to remove the ctoma damaged his facial nerve so that when hecame out of the operation his face was totally paralysed on the left side.Another extensive operation was done to remove the nerve which givessensation to the back of the ear lobe, and graft it onto the facial nerve toreverse the paralysis.Now the nerve graft has taken place, and his face is much better, but stillslightly noticeable.His hearing did start to come back after the op, but about six weeksafterwards, he accidently walked into a pole with such force that he nearlyblacked out, and lost anyof hearing that was starting to come back.His doctor now tells him that he can never re-store the hearing in that earagain. This doctor is an ENT surgeon, and does not specialise in this areaalone.I am not sure this is true after reading emails with in this site.Can you go into the ear almost three years later, and build new bones torestore the hearing ?It wouldn't really be such a concern, but just this week, my husband hasbeen told that a ctoma is now in his other ear, and we are still decidingwhat direction to take.Either he has it checked & cleaned regularly, (it is at its early stages),or we remove it and face the possibility of him losing further hearing inthat ear.In the case of loss of hearing, he would be totally deaf, which is quite ascary thought.And if it was possible to restore the hearing in his left ear, then ourminds would be at ease.Any comments would be appreciated.Jasmine

[Guest guest]

I have questions about food consumption. Carson is not a big eater, is fairly

picky about what he eats, he eats when he's hungry, is on a schedule - as much

as you can do at this age and is happy and as active as possible.>

I'd watch his body fat ratio, put healthy low-fat nibble food out where he can

get it, and keep the fats/sugars to a minimum. Excess weight may acerbate the

problems of leg-bowing and developing stenosis common in achondroplastic dwarfs.

<My pediatrician is concerned about his weight (he's hit a plateau and doesn't

seem to be gaining). She has admitted that although she would like to see a

steady increase, she's not sure that is a reasonable expectation for Carson due

to his stature.>

I'd download the height/weight proportional chart for dwarfs (isn't it on the

LPA site?) and give it to the pediatrician. I'd also refer her to the medical

section there, or give her the contact numbers for physicians who specialize in

dwarf children.

good luck,

luthien

[Guest guest]

If you have any doubts, do not hesitate and go for another opinion. I sure wish I had much soon than I did.

If you let us know what area you live in, perhaps we could recommend someone near you.

-----Original Message-----From: loosvader [mailto:markloosbrock@...]Sent: Sunday, September 07, 2003 6:44 PMcholesteatoma Subject: New To GroupI just found and joined the group today.I have a 12 year old daughter who has had several surgeries to remove cholsteotomas. She has an identical twin sister who has not had any problems. When they were infants/toddlers, they had what seemed like neverending ear infections. When was 4 she had her first set of ear tubes put in. She always seemed to have problems with the tube in her right ear. When she was 6, she had her tubes removed, along with a T & A. By the time she turned 8, the hole in her right ear hadn't healed. So, she went in for a tympanoplasty. The surgery worked too well, as we had to schedule a surgery to install a tube in her right ear due to fluid build-up and ear infections 6 months later. It was during this surgery that the first cholesteotoma was found behind her eardrum. She has had a cholsteotoma removed every year since then. Each one has been in a different part of the ear.Her cholesteotomas seem to grow rapidly. For instance, she had a routine CATSCAN in June that showed no growth. 3 months later, 2 cholesteotoma's show up on a new CATSCAN. This time they don't even appear to be in the ear. We go into surgery this Friday.We are considering getting a second opinion at the MAYO Clinic. Has anyone been to the Mayo for this condition? We would like to know of a good doctor to see there. Thanks.

[Guest guest]

> I just found and joined the group today.

>

> I have a 12 year old daughter who has had several surgeries to

remove

> cholsteotomas. She has an identical twin sister who has not had any

> problems. When they were infants/toddlers, they had what seemed

like

> neverending ear infections. When was 4 she had her first

set

> of ear tubes put in. She always seemed to have problems with the

tube

> in her right ear. When she was 6, she had her tubes removed, along

> with a T & A. By the time she turned 8, the hole in her right ear

> hadn't healed. So, she went in for a tympanoplasty. The surgery

> worked too well, as we had to schedule a surgery to install a tube

in

> her right ear due to fluid build-up and ear infections 6 months

> later. It was during this surgery that the first cholesteotoma was

> found behind her eardrum. She has had a cholsteotoma removed every

> year since then. Each one has been in a different part of the ear.

>

> Her cholesteotomas seem to grow rapidly. For instance, she had a

> routine CATSCAN in June that showed no growth. 3 months later, 2

> cholesteotoma's show up on a new CATSCAN. This time they don't even

> appear to be in the ear. We go into surgery this Friday.

>

> We are considering getting a second opinion at the MAYO Clinic. Has

> anyone been to the Mayo for this condition? We would like to know

of

> a good doctor to see there. Thanks.

[Guest guest]

Our 8 year old son had his surgery done by one of the Mayo Otologists in early August. We had some less than satisfying encounters with an ENT prior to working with the otologist, Dr. . Our sons tympanomastoidectomy has gone very well and we have a fair amount of confidence in Dr. . He had a fellowship and has done this surgery many times (I think in excess of 250 times). He is based out of the Cannon Falls Community Hospital and our surgery was done in the Austin branch of Mayo Health Systems.

We had a similar situation to yours regarding the tubes, also having one that didn't heal because of a wax blockage. I would be happy to tell you more about our son's surgery if you would like, but will stop here for now. In the last month the incision around the ear has healed very nicely and is back to his normal activities.

Steve, dad of

Austin, MN

New To Group

I just found and joined the group today.I have a 12 year old daughter who has had several surgeries to remove cholsteotomas. She has an identical twin sister who has not had any problems. When they were infants/toddlers, they had what seemed like neverending ear infections. When was 4 she had her first set of ear tubes put in. She always seemed to have problems with the tube in her right ear. When she was 6, she had her tubes removed, along with a T & A. By the time she turned 8, the hole in her right ear hadn't healed. So, she went in for a tympanoplasty. The surgery worked too well, as we had to schedule a surgery to install a tube in her right ear due to fluid build-up and ear infections 6 months later. It was during this surgery that the first cholesteotoma was found behind her eardrum. She has had a cholsteotoma removed every year since then. Each one has been in a different part of the ear.Her cholesteotomas seem to grow rapidly. For instance, she had a routine CATSCAN in June that showed no growth. 3 months later, 2 cholesteotoma's show up on a new CATSCAN. This time they don't even appear to be in the ear. We go into surgery this Friday.We are considering getting a second opinion at the MAYO Clinic. Has anyone been to the Mayo for this condition? We would like to know of a good doctor to see there. Thanks.

[Guest guest]

Yes, I am pleased so far with Dr. Antonelli. We had first went to ENT Dr.

practice and are pleased wlith our choice to choose an otologist

with a lot of experience. He did the removal and TORP (total ossicular

reconstruciton prosethis) in one surgery. This was NOv. 25. Kara is

hearing for the first time in her life out of that ear.Sallie

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

My wife's last surgery (c-toma removed and partial reconstruction)

was done by Dr Singleton. We have since started seeing both Dr

Antonelli and Dr /Dr Gershow. We had heard Antonelli was

great at working with kids and /Gershow did more work on

adults. Also we had gone to both doctors offices (to get a second

opinion on tinnitis) and only Dr found the Ctoma, so we are

thinking of going with him for our surgery. It is nice to live in a

town with a few well respected surgeons that specialize in this

area. I am very glad to hear Kara's surgery went well, and we will

pray for her continued recovery.

Mark

> Yes, I am pleased so far with Dr. Antonelli. We had first went to

ENT Dr.

> practice and are pleased wlith our choice to choose an

otologist

> with a lot of experience. He did the removal and TORP (total

ossicular

> reconstruciton prosethis) in one surgery. This was NOv. 25. Kara is

> hearing for the first time in her life out of that ear.Sallie

>

> ________________________________________________________________

> The best thing to hit the internet in years - Juno SpeedBand!

> Surf the web up to FIVE TIMES FASTER!

> Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

I agree. It is great to have these choices nearby. I am grateful! Dr.

's office also was the one that found the c-toma for us in early

June. Good luck. I will be praying for you and your wife! Sallie

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

Only $14.95/ month - visit www.juno.com to sign up today!

[Guest guest]

Please send us a followup form so we can see your progress. If this has

been done, thanks in advance. Take care.

Monroe

Patient Coordinator

Dr. Rutledge's Office

704-682-0260 (cell)

704-871-0031 (office)

New to group

Hi all,

I finally figured out how to post to this board - My surgery was

12/19/03 in Statesville and as of today I'm down 22 pounds. Wish it

was more, but glad these are 22 pounds I'll never see again.

I haven't had any problems except eating some watermelon too fassssst

and too much - up it came a week ago. No probs since. I find that I

can eat anything (of course in much small quantities) and the head

hunger is hard to get past. My tummy says full, but my brain says

more....more.....more.

Anyway, happy to be in this room too.

Kellie in OKC

300/278/???

[Guest guest]

Hi :

I know how you feel. You read the caveats that say " wait as long as

you can " and so you limp along. But in my case I waited just a bit

too long, I couldn't walk without a cane and at the end I basically

did nothing but sit at home. I retired early from my job and went

home and did nothing. I volunteered at a school but it got to hurt

so much to climb the stairs to the building that I quit. Then I

applied for a part-time job and spent an entire morning figuring out

how I could get into the interviewer's office and out without using a

cane. I managed this subterfuge and was offered the job but declined

it because it involved more physical ability than I really had. I

was deluding myself and that's when I decided that it had to be THR

surgery or my life was gone.

It took me about 3 years to finally realize that my hip was not going

to improve no matter how much exercise or therapy or rest or pills I

still had bad hips and they were getting worse. And whatever life I

had was dwindling away.

Needless to say I feel quite strongly about this and hate to see

people who could be helped back to full function put off a surgical

procedure that happens to be one of the most successful in terms of

how it relieves pain and restores function.

[Guest guest]

-Hi and Debi

I am a 48 year old primary school teacher from the UK. Like you my

pain had been gradually increasing and my joint mobility lessening,

but I thought that it was still too early for surgery. However

events overtook me when my pain increased so much that I too was

finding every aspect of my life compomised. I has looked at the

resurf procedure and hoped to have it, but my femur had too many

cysts and would have fractured with a resurf, so I had a LTHR 5

weeks ago. The joint pain went immediately! The pain in my leg was a

cross between the worst case of muscle pain after exercise and

having a large bruise, but compared to what I'd had before,

bearable. This gradually lessened - I'm not taking pain meds on a

regular basis now and haven't done for the last 10 days.

I too was scared by the thought of the surgery - but to be free of

the pain is worth it. My surgeon told me that recovery ahs a lot to

do with your attitude - if you go in thinking that you will bw upand

about quickly, you will be - mind over matter I suppose. I was out

of hospital on day 4 post op and gradually increaseed my walking

distance each day until by the end of week 2 I was walking about a

mile a day with 2 crutches. I'm on those for 6 weeks to allow my

uncemented joint to heal. I go this week for my 6 week check, so

some of the restrictions may be lifted then.

There are lots of helpful tips, advise etc in previous postings - it

takes time to go through them, but it's worth the effort.

Good luck to you both - look forward to a pain free life - we are

still young and who wants to waste years being in pain? Go for it!!

Best wishes to you both

Lesley

-- In Joint Replacement , " treprice2000 "

<treprice2000@y...> wrote:

> Hi :

> I know how you feel. You read the caveats that say " wait as long

as

> you can " and so you limp along. But in my case I waited just a

bit

> too long, I couldn't walk without a cane and at the end I

basically

> did nothing but sit at home. I retired early from my job and went

> home and did nothing. I volunteered at a school but it got to

hurt

> so much to climb the stairs to the building that I quit. Then I

> applied for a part-time job and spent an entire morning figuring

out

> how I could get into the interviewer's office and out without

using a

> cane. I managed this subterfuge and was offered the job but

declined

> it because it involved more physical ability than I really had. I

> was deluding myself and that's when I decided that it had to be

THR

> surgery or my life was gone.

>

> It took me about 3 years to finally realize that my hip was not

going

> to improve no matter how much exercise or therapy or rest or pills

I

> still had bad hips and they were getting worse. And whatever life

I

> had was dwindling away.

>

> Needless to say I feel quite strongly about this and hate to see

> people who could be helped back to full function put off a

surgical

> procedure that happens to be one of the most successful in terms

of

> how it relieves pain and restores function.

[Guest guest]

My point exactly Jerome,

Also, to address 's issue regarding the costs of hearing aids, I

agree. They should be covered by insurance like a CI where the " parts "

and " service " are separate items. There are several bills pending in

several states to force insurance carriers to cover hearing aids.

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

Re: new to group

In a message dated 4/25/2004 6:26:32 PM Pacific Standard Time,

bingrao@... writes:

<<Chance of " don't work " is less than 5%. The other 95% are hearing

better than with hearing aid to some degrees.>>

Do you have a source for those numbers?

this is what my audie told me, someone else was told 1%.. dont know how

that figure comes....

to back it up......here is few of the links.... that support either

figures.

Please note that NONE of those links are from any of CI company.

http://www.hei.org/news/factshts/ciqanda.htm

http://www.atlantaearclinic.com/surgeries.htm

http://www.vh.org/pediatric/patient/otolaryngology/faq/cochlearimplant.h

tml

http://www.cavalierdaily.com:2001/.Archives/1999/January/28/heear.asp

To me.. if i was only to get 3% discrimation (by luck) with Hearing

aid....

and 1 month post activation's discrimation of about 30%...... to

me....it is success.

Many people " assume " success means 100% discrimation. This is not what

i am talking about.

Lee

[Guest guest]

In a message dated 5/17/2004 6:43:34 PM Central Standard Time, vjshoem@... writes:

Very difficult to use the walker and hop every where I want to go.

____

If you're "hopping", someone needs to teach you how to use a walker to put the weight on your arms and not "hop", which is extremely energy inefficient.

y

[Guest guest]

I had my left hip replaced 6/15/04. Still a little new to give you

much prognosis but so far the recovery, to this point, has been a

breeze. Of course my fun is just starting.

38 year old male by the way, and let me tell you: Do every exercise

you can before surgery - the healthier you are going in the easier

the surgery and the recovery are.

[Guest guest]

Great, that gives me about a month to get in shape. Exercise is so painful. I have both hips very bad. I need both replaced which I will do at the same time on July 26th. I have one of the country's top surgeons in Philly doing it so I feel ok about it

Welcome to the forum. I'm new too. jredddawg <jredddawg@...> wrote:

I had my left hip replaced 6/15/04. Still a little new to give you much prognosis but so far the recovery, to this point, has been a breeze. Of course my fun is just starting.38 year old male by the way, and let me tell you: Do every exercise you can before surgery - the healthier you are going in the easier the surgery and the recovery are.

[Guest guest]

If you can manage some exercise pre op I think it's great - I did

what I could, and once I knew that the op was on, I worked on some

upper body strength because I'd heard some people complain that

their arms and shoulders hurt once the started walking with crutches

and sticks - seemed to help!

Good luck with your ops

Lesley

LTHR 17.1.04

[Guest guest]

Hi Lani. I did NOT have facial paralysis. I believe the chances of paralysis are rare. I have had 3 procedures done on my right ear and I have not experienced constant dizziness with any of them. Some dizziness came in spurts but nothing too bad. I know there are others on the panel that have had severe cases of the dizzies though. It is somewhat painful but it really depends on the person and the procedure being done. At 14 and 15 when I had my first 2 surgeries, I didn't have much pain at all. They were both removals of the C-toma. My 3rd and most recent (August 2004) was probably the most painful for me. I had to have my eardrum reconstructed. The "pain" was more from the pressure of the packing in my ear than an actual "hurt" pain. Take the medication as prescribed by your doc and you should be fine. Just as an FYI, I have very little pain tolerance so I'm not just being "strong"!! At the time of my last procedure I thought it hurt more than it did but now that everything

has healed I realize that it was mostly pressure and recovery from the anesthesia that bothered me most.

Good luck!

Wanna Guess? <leilani_808@...> wrote:

Hi. I have to get surgery soon...but i am scared. Is it horrible??? did anyone get facial paralysis?? How long was stay at hosp? or surgery? was it horribly painful? did you come out dizzy??? was hoping to get some insight b4 i go....hugs to all ! Lani~

[Guest guest]

--- Hello and welcome to our group. I have had 4 c-toma surgeries and

5 other ear surgeries and my facial nerve was never affected. They

use facial monitors so they are very careful. While is does hurt

somewhat, it is bearable. Just take pain meds as prescribed and you

will be fine. A lot of people do not have dizziness, but I did have

dizziness for awhile and now it is getting better. Most of these

surgeries are done on an outpatient basis, so you should go home the

same day. When is your surgery? WHat exactly are they doing? Best of

luck to you, Charla

In cholesteatoma , " Wanna Guess? " <leilani_808@h...>

wrote:

>

>

> Hi. I have to get surgery soon...but i am scared. Is it horrible???

> did anyone get facial paralysis?? How long was stay at hosp? or

> surgery? was it horribly painful? did you come out dizzy??? was

> hoping to get some insight b4 i go....hugs to all ! Lani~

[Guest guest]

Wow....thanx for the reply! I am already having dizziness...I could

barely walk for 5 days...took antibiotics that long to help...I just

had a ct and get to see the doc on the 3rd to go over the results...

I was super scared but your info has helped me! I am allergic to any

pain killers so....the thought of surgery without meds was not a fun

thought....but if it didnt hurt you...maybe it wont hurt me either! =)

agian, thanx for the replies! It has helped me bunches! Lani~

[Guest guest]

I post because I have a quilty pleasure. Over the years of visits tothe ENT I would enjoy having 'debris' (my docs word for infection)removed by suction. Now I find that my ear canal is very sensitive andI get pleasure from poking at my ears with sharp objects, my item ofchoice is a paperclip partially straightened for poking and the otherend for hooking and pulling out whatever lurks within. I know Ishouldn't but what harm now?

Hi Redheifer

Slapped wrists, I'm afraid! The rule is "Never stick anything in your ear that's smaller than your elbow". Why? Because you have lots of delicate wax glands down in your ear canal which you could damage or cause to be blocked with debris. That could lead to some quite serious ear infections. For instance, I have canal ctoma in both ears - I didn't acquire it by poking around in my ear but my doctor told me that that could be one way that it could start. It's a situation where ckin cells become embedded and forms a kind of ctoma which eats through the bony wall of the ear canal and then spreads through the temporal bone, the mastoid and the middle ear. It frequently causes facial paralysis and worse and is generally incurable. That could be one reason for not messing around inside your ear and there are plenty of others. I hope you do desist.

Phil

[Guest guest]

Hi ,

I had my knee replacement done three years ago on my right knee my dr never told me what kind of knee replacement he put in my knee I guess I didn't know better to asked questions .What is a Oxford knee replacement ?Well I wish you the best of luck and a speedy recovery.

Susie

-------------- Original message --------------

Hi,

Thursday I will be having a knee replacement, hopefully the Oxford Knee. I had a full knee done in 2002 on my Left Knee, now it is time to repair the Right side! This will be done at Huntsville Hospital in Huntsville, AL with Dr Stanton .

I am interested to hear from anyone that has had an Oxford Knee replacement. I am very excited about my surgery and ready to get rid of the inconveniences caused by bad knees.

Have a Fantastic Day!