Re: Tonsilectomy success rate

[Guest guest]

wel it wasnt successful after about month 6 here

Tonsilectomy success rate

I am trying to get a good idea of what the success rate is for curing

through a tonsillectomy. Does anyone have a dr who has a track record with

patients and has given a success rate or a study to reference? Thanks!

Tracie

---------------------------------

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[Guest guest]

Hi

There is no current study although we have been told by a few ENT doctors

that they are getting research together. It does take time to set that up.

It will also be difficult to get accurate statistics.... because we have

about 6 members here who have children who did become fever free for many

months to years and later.... fevers returned.

Also difficult because it continues to appear that parents will now go for

tonsil surgery before getting all of the DNA studies.

I am guilty.. in the sense that ph did have the available DNA studies

done back in 1999 and 2000 and we did remove his tonsils. Did not work for

us... Gather that it was because we now know that he has a genetic mutation

for NOMID. Sadly I put him through a horrific surgery.... (and it is a

difficult surgery with HIGH bleeding complication rate)..... and he does NOT

have .

Hopefully a true research study will come out with adequate follow up of the

children. The prob with the initial study for was the LACK of follow

up with the children who participated from 1987 to 1997. Since the research

study was not set up for a follow up in a decade or so.... with the new

genome study and isolation of many many mutations.... many of those children

were most likely mis-diagnosed.

This is a very confusing disorder as are ALL of the Periodic Fever

Syndromes.

God Bless.

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

I think the numbers are too low and it's probably not Doctor specific.....

Tonsilectomy success rate

I am trying to get a good idea of what the success rate is for curing

through a tonsillectomy. Does anyone have a dr who has a track record with

patients and has given a success rate or a study to reference?

Thanks!

Tracie

---------------------------------

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[Guest guest]

-

Do you mean the fevers stopped after the tonsillectomy for 6 months and then

returned?

Re: Tonsilectomy success rate

wel it wasnt successful after about month 6 here

Tonsilectomy success rate

I am trying to get a good idea of what the success rate is for curing

through a tonsillectomy. Does anyone have a dr who has a track record

with patients and has given a success rate or a study to reference?

Thanks!

Tracie

---------------------------------

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[Guest guest]

Dr Liccamelli at BOSTON CHILDRENS HOSPITAL in MASS.

His own daughter has syndrome and it worked w/ her and now he is

currently writing a paper to publish about tonsillectomys and " curing "

syndrome. My daughter Madison is # 25 in his study . Madison had her tonsils

out Dec 30th - he has had success with all but one case ( s daughter -

from our group here who also has some other med issues)

Hes GREAT and understands all that our kids and us parent go thru because he

delt with it too.

The phone number is 1-617-355-6000 for the main hospital - then ask for

OTLOLARANGOLOGY Dept - that his dept.

CALL HIM

Tracie Gonyea <tjgonyea@...> wrote:

I am trying to get a good idea of what the success rate is for curing

through a tonsillectomy. Does anyone have a dr who has a track record with

patients and has given a success rate or a study to reference? Thanks!

Tracie

---------------------------------

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[Guest guest]

Yes that is exactly what I am saying

mom to Kiara 5

Tonsilectomy success rate

I am trying to get a good idea of what the success rate is for curing

through a tonsillectomy. Does anyone have a dr who has a track record

with patients and has given a success rate or a study to reference?

Thanks!

Tracie

---------------------------------

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[Guest guest]

First...I love him he's a great doc BUT please be careful...the T & A does not

work for everyone. I can not wait to see his study.....To truly deam a T & A a

cure it would take a lifelong study.

Breana did get some more days between her fevers after BUT she has since been DX

with clinical TRAPS...Enbrel is working for her and she is very TRAPS systmatic.

We also thought she would test + for Muckle wells but she did not...although

after what Fran has been going thru I am anxouis to get back to NIH and ask some

more ?'s!!

I would go thru the T & A all over again with her if I had to do it over it pushed

her fevers from every 12 days with six days on Pred to every 18 days with 6 days

on! Breana had some major issues of internal inflammation last year....was

placed on Enbrel and has been doing OK we have good days bad days!

I know that he is a true believer of which after so many have thru the

'viral DX route' it is a wonderful experience to have a doc whom has actually

been in our shoes!

I recommend him to anyone BUT remember there has been no data to show that a T &

A is a cure....but it sure as heck has helped a lot of kids! I also truly

believe that having the T & A gave BReana some relief from the Ulcers. they don't

got on the tonsils/adenoids anymore since they are gone and that means less

throat irritation and also less throat swelling....there are many benefits o

this surgery!

Cheryl how is Madison doing? Her scabs should be getting ready to fall off?????

hope things are well!

mom to breana 5

Re: Tonsilectomy success rate

Dr Liccamelli at BOSTON CHILDRENS HOSPITAL in MASS.

His own daughter has syndrome and it worked w/ her and now he is

currently writing a paper to publish about tonsillectomys and " curing "

syndrome. My daughter Madison is # 25 in his study . Madison had her tonsils

out Dec 30th - he has had success with all but one case ( s daughter -

from our group here who also has some other med issues)

Hes GREAT and understands all that our kids and us parent go thru because he

delt with it too.

The phone number is 1-617-355-6000 for the main hospital - then ask for

OTLOLARANGOLOGY Dept - that his dept.

CALL HIM

Tracie Gonyea <tjgonyea@...> wrote:

I am trying to get a good idea of what the success rate is for curing

through a tonsillectomy. Does anyone have a dr who has a track record with

patients and has given a success rate or a study to reference? Thanks!

Tracie

---------------------------------

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[Guest guest]

oops i forgot to mention he other thing the T & A helped was that Breana's snoring

STOPPED COMPLETELY!!!

Re: Tonsilectomy success rate

Dr Liccamelli at BOSTON CHILDRENS HOSPITAL in MASS.

His own daughter has syndrome and it worked w/ her and now he is

currently writing a paper to publish about tonsillectomys and " curing "

syndrome. My daughter Madison is # 25 in his study . Madison had her tonsils

out Dec 30th - he has had success with all but one case ( s daughter -

from our group here who also has some other med issues)

Hes GREAT and understands all that our kids and us parent go thru because he

delt with it too.

The phone number is 1-617-355-6000 for the main hospital - then ask for

OTLOLARANGOLOGY Dept - that his dept.

CALL HIM

Tracie Gonyea <tjgonyea@...> wrote:

I am trying to get a good idea of what the success rate is for curing

through a tonsillectomy. Does anyone have a dr who has a track record with

patients and has given a success rate or a study to reference? Thanks!

Tracie

---------------------------------

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whatever.

[Guest guest]

Hi Tracey

I know it may not work, I understand what your saying-- He is so confident

thou- it just makes me want to believe.

Madison is MUCH better now thanks. We did end up back in the hospital on day

4 after the surgury for dehydration and infection. But came home 4 days later (

just need some IV fluids and antibiotics) , and shes better every day. Now I

would say yesterday she was back to her normal self. Im sending her back to

preschool on Tues and our regular routine.

Hopefully it works- hey its been 2 weeks and she has not had a fever or those

sores in her mouth ( tonsils were two weeks ago yesterday) Even with the

infection no fever- that never happens to her- so far so good. She hasn't gone

a week w/o an episode in the last few months- she was taking the prednisone

every week ( 4-7 days) so this is already an improvement.

Before the prednidone they were every 3 weeks, the prednisone made it go away

quickly but came back quicker.

Still keeping my finger crossed

How is Breanna after her DEc 30th procedure ??

<gt4990@...> wrote:

First...I love him he's a great doc BUT please be careful...the T & A does not

work for everyone. I can not wait to see his study.....To truly deam a T & A a

cure it would take a lifelong study.

Breana did get some more days between her fevers after BUT she has since been DX

with clinical TRAPS...Enbrel is working for her and she is very TRAPS systmatic.

We also thought she would test + for Muckle wells but she did not...although

after what Fran has been going thru I am anxouis to get back to NIH and ask some

more ?'s!!

I would go thru the T & A all over again with her if I had to do it over it pushed

her fevers from every 12 days with six days on Pred to every 18 days with 6 days

on! Breana had some major issues of internal inflammation last year....was

placed on Enbrel and has been doing OK we have good days bad days!

I know that he is a true believer of which after so many have thru the

'viral DX route' it is a wonderful experience to have a doc whom has actually

been in our shoes!

I recommend him to anyone BUT remember there has been no data to show that a T &

A is a cure....but it sure as heck has helped a lot of kids! I also truly

believe that having the T & A gave BReana some relief from the Ulcers. they don't

got on the tonsils/adenoids anymore since they are gone and that means less

throat irritation and also less throat swelling....there are many benefits o

this surgery!

Cheryl how is Madison doing? Her scabs should be getting ready to fall off?????

hope things are well!

mom to breana 5

Re: Tonsilectomy success rate

Dr Liccamelli at BOSTON CHILDRENS HOSPITAL in MASS.

His own daughter has syndrome and it worked w/ her and now he is

currently writing a paper to publish about tonsillectomys and " curing "

syndrome. My daughter Madison is # 25 in his study . Madison had her tonsils

out Dec 30th - he has had success with all but one case ( s daughter -

from our group here who also has some other med issues)

Hes GREAT and understands all that our kids and us parent go thru because he

delt with it too.

The phone number is 1-617-355-6000 for the main hospital - then ask for

OTLOLARANGOLOGY Dept - that his dept.

CALL HIM

Tracie Gonyea <tjgonyea@...> wrote:

I am trying to get a good idea of what the success rate is for curing

through a tonsillectomy. Does anyone have a dr who has a track record with

patients and has given a success rate or a study to reference? Thanks!

Tracie

---------------------------------

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[Guest guest]

Hi ,

I'm still considering having 's tonsils removed. Our pediatrician

and I, would like Dr Kastners input on it. She snores like a banchee,

and has had significant apnea on occasion while fevering. I realize

for her it will not cure anything, but it may make these episodes

easier for her to deal with as far as tonsil symptoms.

's TRAPS and HIDS testing recently came back negative. Dr Kastner

mentioned the catagory of the unknown. He was leaning towards HIDS

and mentioned he felt would benefit from Enbrel. I've been

trying to get some feedback about followup, yet it seems/feels,it may

be a chase to get firm answers. Nikki (research nurse) can be hard to

get responses from. I'm still waiting for the Rhem Fellow saw at

the NIH to call and give me 's official test results. We were at

the NIH in Early September. I think they have had a lot more patients

being seen over the last year or so and there may be a few gliches in

the system, not to mention the changes in nursing staff.

All in all even though slightly frustrating I'm still just very

gratful to have met someone that believes there is a problem and

wants to look for answers. (Dr Kastner)I hear he enjoys things out of

the box as it's his goal to find new boxes!

(6)(periodic fever syndrome)

Vancouver Is Canada

-- In , " " <gt4990@c...> wrote:

>

> oops i forgot to mention he other thing the T & A helped was that

Breana's snoring STOPPED COMPLETELY!!!

> Re: Tonsilectomy success rate

>

>

> Dr Liccamelli at BOSTON CHILDRENS HOSPITAL in MASS.

>

> His own daughter has syndrome and it worked w/ her and

now he is currently writing a paper to publish about tonsillectomys

and " curing " syndrome. My daughter Madison is # 25 in his

study . Madison had her tonsils out Dec 30th - he has had success

with all but one case ( s daughter - from our group here who

also has some other med issues)

>

> Hes GREAT and understands all that our kids and us parent go

thru because he delt with it too.

>

> The phone number is 1-617-355-6000 for the main hospital - then

ask for OTLOLARANGOLOGY Dept - that his dept.

>

> CALL HIM

>

> Tracie Gonyea <tjgonyea@y...> wrote:

> I am trying to get a good idea of what the success rate is for

curing through a tonsillectomy. Does anyone have a dr who has

a track record with patients and has given a success rate or a

study to reference? Thanks!

>

> Tracie

>

>

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

> Photos

> Ring in the New Year with Photo Calendars. Add photos, events,

holidays, whatever.

>

>

[Guest guest]

hi denise

Still not getting anywhere i see.. Ouch

We did the tonsillectomy.. was good for 6 months. We are going to NIH just

waiting to see when!

IM sorry s tests are back negative so far!

I hope that you get some answers Ive lost your phone number or else Id call ..

let me know if i can do anything to help!

VANessa

Re: Tonsilectomy success rate

>

>

> Dr Liccamelli at BOSTON CHILDRENS HOSPITAL in MASS.

>

> His own daughter has syndrome and it worked w/ her and

now he is currently writing a paper to publish about tonsillectomys

and " curing " syndrome. My daughter Madison is # 25 in his

study . Madison had her tonsils out Dec 30th - he has had success

with all but one case ( s daughter - from our group here who

also has some other med issues)

>

> Hes GREAT and understands all that our kids and us parent go

thru because he delt with it too.

>

> The phone number is 1-617-355-6000 for the main hospital - then

ask for OTLOLARANGOLOGY Dept - that his dept.

>

> CALL HIM

>

> Tracie Gonyea <tjgonyea@y...> wrote:

> I am trying to get a good idea of what the success rate is for

curing through a tonsillectomy. Does anyone have a dr who has

a track record with patients and has given a success rate or a

study to reference? Thanks!

>

> Tracie

>

>

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

> Photos

> Ring in the New Year with Photo Calendars. Add photos, events,

holidays, whatever.

>

>