New to the group

[Guest guest]

--- Hi Suzi,

welcome to the group. If you have read any of the numerous posts in

here I am sure you see that almost all of us have experienced

the " CHEST PAINS " . Some before surgery ... some after.. some both.

I had my surgery in April and have been having those pains on and off

since. Spasms or NCCP (non cardiac chest pain) is what I have

learned they are. I've been trying almost all of the medications that

people have mentioned here. Right now I am on a very low dose of

Paxil and will increase the dosage in another few days. Many of the

anti-depressant medications seem to work for a good number of the

people. I'm sure you will find answers or at lease a lot of

information you are looking for in this group.

My name is Debbie. I'm from NJ and will be able to talk anytime you

want. The people here have been an amazing source of knowledge and

compassion for me.

In achalasia , " s_ayres2003 " <s_ayres2003@y...> wrote:

> Hi..

> My name is Suzi and I live in California.. I have had achalasia

> since 1987..Back then..it was NOT a well known subject.. I lost

100

> lbs in one year..and was all but dead..They drugged me with valium,

> said i had an emotional disorder and that was it. Almost 20 years

> later..I am much more informed..Life has gone on I was officially

> diagnosed in 1991..I have since married, had 2 children..3

> dilitations..and still take meds to help relax the esophagus..The

> last few days..I have been experiencing the " wave " of chest pains..

> It is becoming concerning..as I don;t want to go through the tough

> stuff anymore..I just happened to look into to see if

> there were any others out there lke me.. I see a LOT more than I

did

> even 5 years ago..Glad to meet you..I look forward to sharing info

> and finding out things I may not know about.

> Blessings,

> SuziQ

[Guest guest]

welcome to the group suzi pleased to meet you

sue

s_ayres2003 <s_ayres2003@...> wrote:

Hi..My name is Suzi and I live in California.. I have had achalasia since 1987..Back then..it was NOT a well known subject.. I lost 100 lbs in one year..and was all but dead..They drugged me with valium, said i had an emotional disorder and that was it. Almost 20 years later..I am much more informed..Life has gone on I was officially diagnosed in 1991..I have since married, had 2 children..3 dilitations..and still take meds to help relax the esophagus..The last few days..I have been experiencing the "wave" of chest pains.. It is becoming concerning..as I don;t want to go through the tough stuff anymore..I just happened to look into to see if there were any others out there lke me.. I see a LOT more than I did even 5 years ago..Glad to meet you..I look forward to sharing info and finding out things I may not know

about.Blessings,SuziQ

[Guest guest]

In a message dated 8/1/2004 1:20:43 PM Eastern Daylight Time, kamrant@... writes:

Hello Everyone, I just found this group few days back. I am 44 yearsold and was recently diagnosed with Achalasia (May of this year). Iwas mis-diagnosed with acid reflux for 2.5 years and was givenProtonix, Prevacid, etc. Around October of last year I started havingthe regurgitations at night, severe spasms, and was choking andthrowing up. This lasted 6 months. My doctor is recommending surgery, Dr. Marco Patti at UCSF (doesanyone know him?). I have done the barium test and been told myesophagus is well dilated. I am scheduled to see the Dr. and discussthe results of the Barium test.Overall I am much better than last year, I can sleep flat, no throwingup, no spasms, no protonix and I am maintaining my weight after about20 Lbs of loss. The only problem I have is swallowing. Barium testshowed that food does get stuck and does not go down, and according tothe manometry test the sphincter relaxes 33% as opposed to 70%. So myquestions are:Am I getting better or worst? how can you tell? My swallowing is worstbut everything else is better. Is there such a thing as getting betterby itself? Do I need the surgery? Does The fact that I do not throw up any more or choke anymore mean Iam getting better or the esophagus is so large now that it can holdmost of the small portions of food that I eat?I am going to see two more doctors in the (San Francisco) Bay Areabefore going on with the surgery. But I can always use some good advice.ThanksKamran

Hi Kamran,

Sorry to hear that you have been diagnosed with achalasia, but it's great that you now know what is going on and have a name for it. Also good that you found this group!

This is a wonderful resource, both from the members experiences with the food that give the least trouble to the doctors that many have found to be experienced and compassionate.

You will want to check out the group website at for the past files, to see if your doctor is mentioned, also to see a list of surgeons that are experienced, if you choose to go that route.

Sounds like once you see what the manometry test numbers show, you'll have more to go on, information wise, about how advanced your particular case of achalasia may be.

Welcome to the group!

You will find wise, friendly and helpful people here.

All the best,

Jan from Northern KY

[Guest guest]

Kamran,

Welcome to the group and sorry to hear of your recent diagnosis. I bet

it's nice to finally have a name to go along with your symptoms and to

know that it's not all in your head as many of us have been told in our

search for a diagnosis. This disease really sucks sometimes, but you've

found a wonderful group of understanding, caring and compassionate

individuals here in the group with a wealth of information the likes of

which you won't find anywhere else!

I've had achalasia for 9 years and was mis-diagnosed for the first 5

years until I finally got so discouraged I went to the local library and

checked out a book of gastro-diseases where I found my disease after a

few short hours of research! So why does it take a doctor so long to

come up with a diagnosis anyway???

Well, in answer to your question about Dr. Patti, he's a very well known

doctor and very well versed in achalasia. There have been many people

here in the group who have been to him and undergone successful

surgeries.

From the knowledge I have gained being a member of this group for the

past 2 years, my advice to you would be to proceed with surgery. The

longer you wait, the more dilated your esophagus may become, and the

less effective the surgical outcome might be. You may want to try having

a dilatation first and possibly get years of success from this, or it

may only last a matter of hours. There is also a general consensus that

the more dilatations one has, the more scar tissue, and the more

difficulty for the surgeon to perform the myotomy.

My worst years of having achalasia were years 1-3. I had been at a stage

where I had lost 60 lbs in a matter of a year or less, and wasn't able

to swallow my own saliva, then one day I was drinking some tea, and my

LES just decided to open up and all my food went whooshing into my

stomach. I started experimenting with drinking warm tea to help open my

LES, and developed a technique that worked for me, but it was still less

than ideal, and I would still have problems with choking (very scary)and

needing to jump up and down to get the food to go down so decided to

have surgery.

I had my surgery 2 years ago and while I still feel it has been a

success, I am in need of a " tune up " , so will be having a dilatation

soon.

So what other doctors are you planning to see in the area???

My surgeon is Horacio Asbun, and he is located in Pleasant Hill. He's

experienced with achalasia and is a master of advanced laparoscopic

surgery at Mt. Diablo Medical Center in Concord. He's been using the Da

Vinci Robot to perform his myotomies (since right after I had my

surgery) which allows for much more pricision with this very delicate

surgery.

Wishing you all the best!

Sandi in Nor Cal

New to the group

Hello Everyone, I just found this group few days back. I am 44 years

old and was recently diagnosed with Achalasia (May of this year). I

was mis-diagnosed with acid reflux for 2.5 years and was given

Protonix, Prevacid, etc. Around October of last year I started having

the regurgitations at night, severe spasms, and was choking and

throwing up. This lasted 6 months.

My doctor is recommending surgery, Dr. Marco Patti at UCSF (does

anyone know him?). I have done the barium test and been told my

esophagus is well dilated. I am scheduled to see the Dr. and discuss

the results of the Barium test.

Overall I am much better than last year, I can sleep flat, no throwing

up, no spasms, no protonix and I am maintaining my weight after about

20 Lbs of loss. The only problem I have is swallowing. Barium test

showed that food does get stuck and does not go down, and according to

the manometry test the sphincter relaxes 33% as opposed to 70%. So my

questions are:

Am I getting better or worst? how can you tell? My swallowing is worst

but everything else is better. Is there such a thing as getting better

by itself?

Do I need the surgery?

Does The fact that I do not throw up any more or choke anymore mean I

am getting better or the esophagus is so large now that it can hold

most of the small portions of food that I eat?

I am going to see two more doctors in the (San Francisco) Bay Area

before going on with the surgery. But I can always use some good advice.

Thanks

Kamran

[Guest guest]

Hi Kamrant,

Welcome to the group!

We have found that all of us have good and bad spells so to know it you are getting worse if sometimes not easy , but generally I would say I am getting worse if I can no longer get food down that I used to manage before over a period of a few weeks. Some of us have delayed until only clear fluids have gone down and there has been significant weight loss and you feel too tired to breath ! You should preferably go for surgery before you oesophagus gets dilated because once the oesophagus is dilated there appears to be a little less success, but that is not always so. So all things considered surgery as soon as you can is still the best option.

Please let us know how you are getting on and what you are advised to do. Good wishes,

Joan

Johannesburg

South Africa

New to the group

Hello Everyone, I just found this group few days back. I am 44 yearsold and was recently diagnosed with Achalasia (May of this year). Iwas mis-diagnosed with acid reflux for 2.5 years and was givenProtonix, Prevacid, etc. Around October of last year I started havingthe regurgitations at night, severe spasms, and was choking andthrowing up. This lasted 6 months. My doctor is recommending surgery, Dr. Marco Patti at UCSF (doesanyone know him?). I have done the barium test and been told myesophagus is well dilated. I am scheduled to see the Dr. and discussthe results of the Barium test.Overall I am much better than last year, I can sleep flat, no throwingup, no spasms, no protonix and I am maintaining my weight after about20 Lbs of loss. The only problem I have is swallowing. Barium testshowed that food does get stuck and does not go down, and according tothe manometry test the sphincter relaxes 33% as opposed to 70%. So myquestions are:Am I getting better or worst? how can you tell? My swallowing is worstbut everything else is better. Is there such a thing as getting betterby itself? Do I need the surgery? Does The fact that I do not throw up any more or choke anymore mean Iam getting better or the esophagus is so large now that it can holdmost of the small portions of food that I eat?I am going to see two more doctors in the (San Francisco) Bay Areabefore going on with the surgery. But I can always use some good advice.ThanksKamran

[Guest guest]

Prednisone -- works for me, but has side effects.

Desensitization -- works for me, but temporarily.

Surgery -- never had it -- see the survey

samters/surveys?id=11913353

As for dust-mites -- yes, I went through that too -- the allergist was

totally ambiguous and after 6 years I gave up on the shots and didn't notice

a difference.

There is no magic bullet, no matter how hard you research the library.

And . . .welcome.

--

Ken West

Check the library . . .

samters/links

From: " , Ang & Jack " <savandenban@...>

Reply-samters

Date: Sat, 27 Nov 2004 12:55:04 +1000

<samters >

Subject: NEW TO THE GROUP

Hello,

My name is and I live in Brisbane, Queensland, AustraliaŠ..

I stumbled across this Samter¹s group thanks for androu, so I

am very grateful to her to put me in the right direction of contacting

people who have the same symptoms.

I have suffered from sinus, nasal polyps, and aspirin sensitivity for the

past 8 years or so. I have had numerous operations to remove the polyps,

only to have them return immediately! Having lived in a ³country town² most

of my life, the ENT surgeons there suggested the only means to irradiate the

polyps was to operate until I moved to Brisbane and met my now very helpful

ENT specialist who gave me literature in relation to salicylates, amines

etcŠ. I am now on a very low salicylate, amines diet with my last operation

on my nose being in July of this year. So far the polyps have subsided, I

believe due to my low salicylate diet, but have found that after every

operation I may have my smell for about 6 weeks or so and then it

disappears, never to return until another operation.

I was hoping e-mailing this group that there would people out there who have

experienced the same symptoms, operations, loss of smell and may be able to

offer advice on how to retrieve my smell??? I know that it isn¹t the end of

the world and I would rather have no polyps and no smell, than polyps and no

smell. But it was very nice when I could smell to enjoy the nice aroma¹s.

I have been desensitised for dust mites in the past, whether that worked I¹m

not sure, but would dust mites, pollens, perfumes etc.. play a part in the

loss of my smell if my polyps are under control by diet?

Looking forward to hearing your responses.

, Brisbane

[Guest guest]

Hello, . Welcome to the group!

I regret that you suffer symptoms similar to many in our group. As some have

said recently, we all

seem to react differently to different medications and diets. What works for

some, may not work

for others. Regarding your allergies: I am convinced that controlling my

allergies through shots

and daily antihistamines has helped me. I think it is a given that preventing

excess mucus

production and sinus irritation is very important for samterites. I feel much

better having taken

allergy shots for several years. I no longer experience a " hayfever season " .

Regrettably, some people, including physicians, seem to consider a lack of smell

and taste as a

mere inconvenience. Obviously, they have never suffered the problem for any

extended time. I am

convinced that the absence of those senses will someday be recognized as a major

cause of

depression and other maladies.

Right now, I have found that three things have helped me retain my smell most of

the time:

1) Minimizing allergies (including saline nasal rinse)

2) Aspirin Desens. (I think it has shrunk my polyps somewhat)

3) Stopping infections very early with prednisone burst plus agressive

antibiotic treatment. I

often exend antibiotics until my mucus is completely clear.

I hope you will take time to search the archives. There is a wealth of info

there.

Good luck!

Jim (Texas)

--- " , Ang & Jack " <savandenban@...> wrote:

> Hello,

>

>

>

> My name is and I live in Brisbane, Queensland, Australia...

>

>

>

> I stumbled across this Samter's group thanks for androu, so I

> am very grateful to her to put me in the right direction of contacting

> people who have the same symptoms.

>

>

>

> I have suffered from sinus, nasal polyps, and aspirin sensitivity for the

> past 8 years or so. I have had numerous operations to remove the polyps,

> only to have them return immediately! Having lived in a " country town "

> most of my life, the ENT surgeons there suggested the only means to

> irradiate the polyps was to operate until I moved to Brisbane and met my now

> very helpful ENT specialist who gave me literature in relation to

> salicylates, amines etc.. I am now on a very low salicylate, amines diet

> with my last operation on my nose being in July of this year. So far the

> polyps have subsided, I believe due to my low salicylate diet, but have

> found that after every operation I may have my smell for about 6 weeks or so

> and then it disappears, never to return until another operation.

>

>

>

> I was hoping e-mailing this group that there would people out there who have

> experienced the same symptoms, operations, loss of smell and may be able to

> offer advice on how to retrieve my smell??? I know that it isn't the end of

> the world and I would rather have no polyps and no smell, than polyps and no

> smell. But it was very nice when I could smell to enjoy the nice aroma's.

> I have been desensitised for dust mites in the past, whether that worked I'm

> not sure, but would dust mites, pollens, perfumes etc.. play a part in the

> loss of my smell if my polyps are under control by diet?

>

>

>

>

>

> Looking forward to hearing your responses.

>

>

>

> , Brisbane

>

>

[Guest guest]

Jim,

Thankyou for replying to me. I look

forward to reading the articles in the archives and finding that there are

people out there like me.

I agree with you wholeheartedly –

lack of smell will one day be more recognised.

Thanks again,

.

From:

Jim Brown [mailto:jim747@...]

Sent: Saturday, 27 November 2004

2:36 PM

samters

Subject: Re: NEW TO THE

GROUP

Hello, . Welcome to the group!

I regret that you suffer symptoms similar to many

in our group. As some have said recently, we all

seem to react differently to different medications

and diets. What works for some, may not work

for others. Regarding your allergies: I am

convinced that controlling my allergies through shots

and daily antihistamines has helped me. I think it

is a given that preventing excess mucus

production and sinus irritation is very important

for samterites. I feel much better having taken

allergy shots for several years. I no longer

experience a " hayfever season " .

Regrettably, some people, including physicians,

seem to consider a lack of smell and taste as a

mere inconvenience. Obviously, they have never

suffered the problem for any extended time. I am

convinced that the absence of those senses will

someday be recognized as a major cause of

depression and other maladies.

Right now, I have found that three things have

helped me retain my smell most of the time:

1) Minimizing allergies (including saline nasal

rinse)

2) Aspirin Desens. (I think it has shrunk my

polyps somewhat)

3) Stopping infections very early with prednisone

burst plus agressive antibiotic treatment. I

often exend antibiotics until my mucus is

completely clear.

I hope you will take time to search the archives.

There is a wealth of info there.

Good luck!

Jim (Texas)

--- " , Ang & Jack "

<savandenban@...> wrote:

> Hello,

>

>

>

> My name is and I live in Brisbane, Queensland,

Australia...

>

>

>

> I stumbled across this Samter's group thanks

for androu, so I

> am very grateful to her to put me in the

right direction of contacting

> people who have the same symptoms.

>

>

>

> I have suffered from sinus, nasal polyps, and

aspirin sensitivity for the

> past 8 years or so. I have had numerous

operations to remove the polyps,

> only to have them return

immediately! Having lived in a " country town "

> most of my life, the ENT surgeons there

suggested the only means to

> irradiate the polyps was to operate until I

moved to Brisbane

and met my now

> very helpful ENT specialist who gave me

literature in relation to

> salicylates, amines etc.. I am now on a

very low salicylate, amines diet

> with my last operation on my nose being in

July of this year. So far the

> polyps have subsided, I believe due to my low

salicylate diet, but have

> found that after every operation I may have

my smell for about 6 weeks or so

> and then it disappears, never to return until

another operation.

>

>

>

> I was hoping e-mailing this group that there

would people out there who have

> experienced the same symptoms, operations,

loss of smell and may be able to

> offer advice on how to retrieve my

smell??? I know that it isn't the end of

> the world and I would rather have no polyps

and no smell, than polyps and no

> smell. But it was very nice when I

could smell to enjoy the nice aroma's.

> I have been desensitised for dust mites in

the past, whether that worked I'm

> not sure, but would dust mites, pollens,

perfumes etc.. play a part in the

> loss of my smell if my polyps are under

control by diet?

>

>

>

>

>

> Looking forward to hearing your responses.

>

>

>

> , Brisbane

>

>

[Guest guest]

The loss of the sense of smell is due to the involvment by polyps, edema and inflammation high up along the cribiform plate. For the most part, I don't see diet or much of anything helping the sense of smell. For a lot of people a short burst of steroids can give one back the sense of smell for a while but it is usually long lasting. Although I know it is a nice thing to have, being in the medical field and raising livelstock sometimes, I am glad I don;t have it anymore. Whenever I get it back now -I don;t like it. Carol

NEW TO THE GROUP

Hello,

My name is and I live in Brisbane, Queensland, Australia…..

I stumbled across this Samter’s group thanks for androu, so I am very grateful to her to put me in the right direction of contacting people who have the same symptoms.

I have suffered from sinus, nasal polyps, and aspirin sensitivity for the past 8 years or so. I have had numerous operations to remove the polyps, only to have them return immediately! Having lived in a “country town” most of my life, the ENT surgeons there suggested the only means to irradiate the polyps was to operate until I moved to Brisbane and met my now very helpful ENT specialist who gave me literature in relation to salicylates, amines etc…. I am now on a very low salicylate, amines diet with my last operation on my nose being in July of this year. So far the polyps have subsided, I believe due to my low salicylate diet, but have found that after every operation I may have my smell for about 6 weeks or so and then it disappears, never to return until another operation.

I was hoping e-mailing this group that there would people out there who have experienced the same symptoms, operations, loss of smell and may be able to offer advice on how to retrieve my smell??? I know that it isn’t the end of the world and I would rather have no polyps and no smell, than polyps and no smell. But it was very nice when I could smell to enjoy the nice aroma’s. I have been desensitised for dust mites in the past, whether that worked I’m not sure, but would dust mites, pollens, perfumes etc.. play a part in the loss of my smell if my polyps are under control by diet?

Looking forward to hearing your responses.

, Brisbane

[Guest guest]

Welcome ,

I am able to smell and taste after 20 years and am not using any medication. I

avoid additives as far as possible and my diet is also low in salicylates.

Please click on the Links (library section of the Sampters site) for relevant

links and info.

Rietjie

>>> savandenban@... 11/27/04 04:55AM >>>

Hello,

My name is and I live in Brisbane, Queensland, Australia...

I stumbled across this Samter's group thanks for androu, so I

am very grateful to her to put me in the right direction of contacting

people who have the same symptoms.

I have suffered from sinus, nasal polyps, and aspirin sensitivity for the

past 8 years or so. I have had numerous operations to remove the polyps,

only to have them return immediately! Having lived in a " country town "

most of my life, the ENT surgeons there suggested the only means to

irradiate the polyps was to operate until I moved to Brisbane and met my now

very helpful ENT specialist who gave me literature in relation to

salicylates, amines etc.. I am now on a very low salicylate, amines diet

with my last operation on my nose being in July of this year. So far the

polyps have subsided, I believe due to my low salicylate diet, but have

found that after every operation I may have my smell for about 6 weeks or so

and then it disappears, never to return until another operation.

I was hoping e-mailing this group that there would people out there who have

experienced the same symptoms, operations, loss of smell and may be able to

offer advice on how to retrieve my smell??? I know that it isn't the end of

the world and I would rather have no polyps and no smell, than polyps and no

smell. But it was very nice when I could smell to enjoy the nice aroma's.

I have been desensitised for dust mites in the past, whether that worked I'm

not sure, but would dust mites, pollens, perfumes etc.. play a part in the

loss of my smell if my polyps are under control by diet?

Looking forward to hearing your responses.

, Brisbane

[Guest guest]

Hello to All, I can relate to all the comments about smell, my sense of

smell has been back for 4 months now, I am having a fortunate stretch of

good health and no symptoms. As the holidays approach I am constantly

reminded how sick I was last year and all the things I couldn't smell and

didn't do because my health was so poor. I must again recommend this saline

rinse that I have been doing, with the pulimicort respules, has anyone else

tried it? You would need a scrip from your doctor. I can't say for sure that

it is responsible for this healthy streak but It is the only thing that I am

doing differently. It also seems that the longer I am off prednisone,

antibiotics etc. the healthier I get. It may be a matter of breaking a

viscous cycle. Anyway I have had two colds this season with no resulting

sinus or lung complications and that is something! I urge you to try this

rinse, if it works or even helps it is a simple remedy.

NH

Re: NEW TO THE GROUP

>

> Welcome ,

> I am able to smell and taste after 20 years and am not using any

> medication. I avoid additives as far as possible and my diet is also low

> in salicylates. Please click on the Links (library section of the Sampters

> site) for relevant links and info.

> Rietjie

>

>>>> savandenban@... 11/27/04 04:55AM >>>

> Hello,

>

>

>

> My name is and I live in Brisbane, Queensland, Australia...

>

>

>

> I stumbled across this Samter's group thanks for androu, so

> I

> am very grateful to her to put me in the right direction of contacting

> people who have the same symptoms.

>

>

>

> I have suffered from sinus, nasal polyps, and aspirin sensitivity for the

> past 8 years or so. I have had numerous operations to remove the polyps,

> only to have them return immediately! Having lived in a " country town "

> most of my life, the ENT surgeons there suggested the only means to

> irradiate the polyps was to operate until I moved to Brisbane and met my

> now

> very helpful ENT specialist who gave me literature in relation to

> salicylates, amines etc.. I am now on a very low salicylate, amines diet

> with my last operation on my nose being in July of this year. So far the

> polyps have subsided, I believe due to my low salicylate diet, but have

> found that after every operation I may have my smell for about 6 weeks or

> so

> and then it disappears, never to return until another operation.

>

>

>

> I was hoping e-mailing this group that there would people out there who

> have

> experienced the same symptoms, operations, loss of smell and may be able

> to

> offer advice on how to retrieve my smell??? I know that it isn't the end

> of

> the world and I would rather have no polyps and no smell, than polyps and

> no

> smell. But it was very nice when I could smell to enjoy the nice aroma's.

> I have been desensitised for dust mites in the past, whether that worked

> I'm

> not sure, but would dust mites, pollens, perfumes etc.. play a part in the

> loss of my smell if my polyps are under control by diet?

>

>

>

>

>

> Looking forward to hearing your responses.

>

>

>

> , Brisbane

>

>

>

>

>

>

>

[Guest guest]

Hi ,

Is it possible that you might be one of the lucky few who totally recovers from Samters?

Sounds very promising so far!

Beckyanmcarter <anmcarter@...> wrote:

Hello to All, I can relate to all the comments about smell, my sense of smell has been back for 4 months now, I am having a fortunate stretch of good health and no symptoms. As the holidays approach I am constantly reminded how sick I was last year and all the things I couldn't smell and didn't do because my health was so poor. I must again recommend this saline rinse that I have been doing, with the pulimicort respules, has anyone else tried it? You would need a scrip from your doctor. I can't say for sure that it is responsible for this healthy streak but It is the only thing that I am doing differently. It also seems that the longer I am off prednisone, antibiotics etc. the healthier I get. It may be a matter of breaking a viscous cycle. Anyway I have had two colds this season with no resulting sinus or lung complications and that is

something! I urge you to try this rinse, if it works or even helps it is a simple remedy. NH Re: NEW TO THE GROUP>> Welcome ,> I am able to smell and taste after 20 years and am not using any > medication. I avoid additives as far as possible and my diet is also low > in salicylates. Please click on the Links (library section of the Sampters > site) for relevant links and info.> Rietjie>>>>> savandenban@... 11/27/04 04:55AM >>>> Hello,>>>> My name is and I live in Brisbane, Queensland, Australia...>>>> I stumbled across this Samter's group thanks for androu, so > I> am

very grateful to her to put me in the right direction of contacting> people who have the same symptoms.>>>> I have suffered from sinus, nasal polyps, and aspirin sensitivity for the> past 8 years or so. I have had numerous operations to remove the polyps,> only to have them return immediately! Having lived in a "country town"> most of my life, the ENT surgeons there suggested the only means to> irradiate the polyps was to operate until I moved to Brisbane and met my > now> very helpful ENT specialist who gave me literature in relation to> salicylates, amines etc.. I am now on a very low salicylate, amines diet> with my last operation on my nose being in July of this year. So far the> polyps have subsided, I believe due to my low salicylate diet, but have> found that after every operation I may have my smell for about 6 weeks or > so>

and then it disappears, never to return until another operation.>>>> I was hoping e-mailing this group that there would people out there who > have> experienced the same symptoms, operations, loss of smell and may be able > to> offer advice on how to retrieve my smell??? I know that it isn't the end > of> the world and I would rather have no polyps and no smell, than polyps and > no> smell. But it was very nice when I could smell to enjoy the nice aroma's.> I have been desensitised for dust mites in the past, whether that worked > I'm> not sure, but would dust mites, pollens, perfumes etc.. play a part in the> loss of my smell if my polyps are under control by diet?>>>>>> Looking forward to hearing your responses.>>>> , Brisbane>>>>>>>

[Guest guest]

Hi Becky, It would be wonderful if this is a recovery. It is wonderful even if it is a temporary reprieve. Have others had long stretches without symptoms?

Re: NEW TO THE GROUP>> Welcome ,> I am able to smell and taste after 20 years and am not using any > medication. I avoid additives as far as possible and my diet is also low > in salicylates. Please click on the Links (library section of the Sampters > site) for relevant links and info.> Rietjie>>>>> savandenban@... 11/27/04 04:55AM >>>> Hello,>>>> My name is and I live in Brisbane, Queensland, Australia...>>>> I stumbled across this Samter's group thanks for androu, so > I> am very grateful to her to put me in the right direction of contacting> people who have the same symptoms.>>>> I have suffered from sinus, nasal polyps, and aspirin sensitivity for the> past 8 years or so. I have had numerous operations to remove the polyps,> only to have them return immediately! Having lived in a "country town"> most of my life, the ENT surgeons there suggested the only means to> irradiate the polyps was to operate until I moved to Brisbane and met my > now> very helpful ENT specialist who gave me literature in relation to> salicylates, amines etc.. I am now on a very low salicylate, amines diet> with my last operation on my nose being in July of this year. So far the> polyps have subsided, I believe due to my low salicylate diet, but have> found that after every operation I may have my smell for about 6 weeks or > so> and then it disappears, never to return until another operation.>>>> I was hoping e-mailing this group that there would people out there who > have> experienced the same symptoms, operations, loss of smell and may be able > to> offer advice on how to retrieve my smell??? I know that it isn't the end > of> the world and I would rather have no polyps and no smell, than polyps and > no> smell. But it was very nice when I could smell to enjoy the nice aroma's.> I have been desensitised for dust mites in the past, whether that worked > I'm> not sure, but would dust mites, pollens, perfumes etc.. play a part in the> loss of my smell if my polyps are under control by diet?>>>>>> Looking forward to hearing your responses.>>>> , Brisbane>>>>>>>

[Guest guest]

I have had a few short stretches which seem to be getting longer as the years go by. Definately heading in the right direction (on the whole!). It is totally amazing when I feel well, unfortunately I don't feel great at the moment. When I feel well I feel on such a high, just to be able to breath and smell and taste and live life to the full - difficult to get the right balance, though, often overdo things a bit!

Becky xanmcarter <anmcarter@...> wrote:

Hi Becky, It would be wonderful if this is a recovery. It is wonderful even if it is a temporary reprieve. Have others had long stretches without symptoms?

Re: NEW TO THE GROUP>> Welcome ,> I am able to smell and taste after 20 years and am not using any > medication. I avoid additives as far as possible and my diet is also low > in salicylates. Please click on the Links (library section of the Sampters > site) for relevant links and info.> Rietjie>>>>> savandenban@... 11/27/04 04:55AM >>>> Hello,>>>> My name is and I live in Brisbane, Queensland, Australia...>>>> I stumbled across this Samter's group thanks for androu, so > I> am

very grateful to her to put me in the right direction of contacting> people who have the same symptoms.>>>> I have suffered from sinus, nasal polyps, and aspirin sensitivity for the> past 8 years or so. I have had numerous operations to remove the polyps,> only to have them return immediately! Having lived in a "country town"> most of my life, the ENT surgeons there suggested the only means to> irradiate the polyps was to operate until I moved to Brisbane and met my > now> very helpful ENT specialist who gave me literature in relation to> salicylates, amines etc.. I am now on a very low salicylate, amines diet> with my last operation on my nose being in July of this year. So far the> polyps have subsided, I believe due to my low salicylate diet, but have> found that after every operation I may have my smell for about 6 weeks or > so>

and then it disappears, never to return until another operation.>>>> I was hoping e-mailing this group that there would people out there who > have> experienced the same symptoms, operations, loss of smell and may be able > to> offer advice on how to retrieve my smell??? I know that it isn't the end > of> the world and I would rather have no polyps and no smell, than polyps and > no> smell. But it was very nice when I could smell to enjoy the nice aroma's.> I have been desensitised for dust mites in the past, whether that worked > I'm> not sure, but would dust mites, pollens, perfumes etc.. play a part in the> loss of my smell if my polyps are under control by diet?>>>>>> Looking forward to hearing your responses.>>>> , Brisbane>>>>>>>

[Guest guest]

Liz,

Sometimes I laugh and tell my husband that Samters is just God's way of keeping me from being ABSOLUTELY and TOTALLY perfect! Otherwise, without it, I would be. Hee hee.

Billie in Texas

Billie Ford

msbfford@...

"Well behaved women seldom make history."

Laurel Thatcher Ulrich__________________________________________________

[Guest guest]

I do like the way ya'll think!!! ))

New Mexico

> Liz,

> Sometimes I laugh and tell my husband that Samters is just God's

way of keeping me from being ABSOLUTELY and TOTALLY perfect!

Otherwise, without it, I would be. Hee hee.

> Billie in Texas

[Guest guest]

Me too!

;-)

Becky x <s_c_stevens@...> wrote:

I do like the way ya'll think!!! ))New Mexico> Liz,> Sometimes I laugh and tell my husband that Samters is just God's way of keeping me from being ABSOLUTELY and TOTALLY perfect! Otherwise, without it, I would be. Hee hee. > Billie in Texas

Moving house? Beach bar in Thailand? New Wardrobe? Win £10k with to make your dream a reality.

[Guest guest]

Dear Daryl,

You may not want confirmation, but the doctor's advice is valid. I'm 58 and

facing surgery. I had a short fusion at 13 and was told I needed revision and

longer fusion when I was 38. I thought the doctor was crazy. He wasn't. I

thought just getting pain under control would be the answer. It wasn't.

If being physcially active would stop your curvature, it would have already.

It is said that our scoliosis progresses 1 or 2 degrees a year at the level

you are now. By the time you are my age it will be 65 and 58 conservatively

(or 80/73). Since you are 'young' , healthy, and have health insurance (?) now

would be a more opportune time than later.

Before I was 38 I did not have one minute of pain. Pain can sneak up on you,

don't wait until it does. Seek out the scoliosis books, research the best

doctors, and plan. Learning the hard way....

Jolene

[Guest guest]

Hi there

You can rest easy, if you’ve never

had any medical problems before where the doctors have told you it’s due

to heterochromia, then all that’s “wrong is you have 2 different coloured eyes.

Not that there is anything wrong with that. Personally I have a blue right eye

and a brown left eye. You can see them on the picture, mine is .

From: angeleyes228823

[mailto:angeleyes228823@...]

Sent: 03 January 2005 04:57

heterochromia

Subject: New to

the group

Hi my name is . I'm 16 and I am new to this

group. I was born

with heterochromia. My right eye is a deep blue

and my left eye is

hazel brown. My mom had this when she was a baby

also but it

changed. I've never done any research on this and

I was just

wondering if having this is dangerous or

something? If someone knows

will you please email me and let me know? Thank

you.

--

No virus found in this incoming message.

Checked by AVG Anti-Virus.

Version: 7.0.296 / Virus Database: 265.6.7 - Release Date: 30/12/2004

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No virus found in this outgoing message.

Checked by AVG Anti-Virus.

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[Guest guest]

~ have you had any problems with people trying to make fun of

your eyes in school?

>

> Hi my name is . I'm 16 and I am new to this group. I was

born

> with heterochromia. My right eye is a deep blue and my left eye is

> hazel brown. My mom had this when she was a baby also but it

> changed. I've never done any research on this and I was just

> wondering if having this is dangerous or something? If someone

knows

> will you please email me and let me know? Thank you.

>

[Guest guest]

Well, I'm not , I'm ne, but I'm 14 and so far I've only

ever gotten reactions like " COOL " and " WOW. " In fact, last year when

I went into highschool (it's gr 8-12 where I live), when one girl

found out in my gym class, she said, " WOW you're my new girlfriend. "

And hugged me. It's an advantage to me. Everyone thinks it's cool

and different. I hope this helps. =)

> >

> > Hi my name is . I'm 16 and I am new to this group. I was

> born

> > with heterochromia. My right eye is a deep blue and my left eye

is

> > hazel brown. My mom had this when she was a baby also but it

> > changed. I've never done any research on this and I was just

> > wondering if having this is dangerous or something? If someone

> knows

> > will you please email me and let me know? Thank you.

> >

[Guest guest]

hehe, one of my friends confided in me online the other day when we were

talking about heterochromia. He said, " That was one of the first things I

noticed about you when I met you. Kinda made me feel boring for having eyes

that were both the same color all the time. " Which was probably the coolest

thing anyone's ever said about my eyes.

--

PS i added some recent photos from vacation to the photo gallery, my eyes

came out pretty good on them. I'm about to put a new close up shot that got

taken yesterday. probably the best picture taken of my eyes ever.

lates.

Re: New to the group

Well, I'm not , I'm ne, but I'm 14 and so far I've only

ever gotten reactions like " COOL " and " WOW. " In fact, last year when

I went into highschool (it's gr 8-12 where I live), when one girl

found out in my gym class, she said, " WOW you're my new girlfriend. "

And hugged me. It's an advantage to me. Everyone thinks it's cool

and different. I hope this helps. =)

> >

> > Hi my name is . I'm 16 and I am new to this group. I was

> born

> > with heterochromia. My right eye is a deep blue and my left eye

is

> > hazel brown. My mom had this when she was a baby also but it

> > changed. I've never done any research on this and I was just

> > wondering if having this is dangerous or something? If someone

> knows

> > will you please email me and let me know? Thank you.

> >

[Guest guest]

Hi Kelley...

I'm really sorry that you've gone to doctors who think you're fine. I

think you need to find a new one who has a lot of experience treating

people with prior scoliosis fusions. Where do you live?

--

>

>

> Hi, I'm new here. I am 28 years old, and had spinal surgery with the

> implantation of 2 Harrington rods when I was 14 (in 1990). I wore a

> Milwaukee brace for a year before that. I was a gymnast for 11 years,

> so the change in lifestyle was very difficult. I've adjusted quite

> well, and am a school counselor and gymnastics coach. The only thing

> I am worried about is the constant pain. I feel as though I am too

> young to be in this much pain. Is my back supposed to hurt every

> day?? I have been back to the doctor several times, had dozens of x-

> rays, and recently, a bone scan. All of the doctors say I'm fine. How

> can I be fine if I'm in pain everyday? I don't really know what

> answers I keep searching for. I suppose I'm just curious about what

> my future holds for me. Has anybody experienced similar problems?

> Thanks for the support.

> Kelley

[Guest guest]

Hi, Kelley!

I'm 29 and had one harrington at age 13 in 1989. I heard that from

doctors too. " Everything looks ok " but I'm in pain anyway. I have

seen many doctors who have finally diagnosed flatback and also been

able to recommend physical therapy and pain management. I've also

changed my lifestyle a lot (which I'm not thrilled with . . .).

But I've found a lot of support here and lots of patient ideas to

help me be proactive with my doctors. And getting to doctors who

have lots of experience with patients with harrington rods and

scoliosis fusions is a really good idea.

Welcome!

Deb M.

1989 Harrington rod, fusion T3-L4

>

>

> Hi, I'm new here. I am 28 years old, and had spinal surgery with

the

> implantation of 2 Harrington rods when I was 14 (in 1990). I wore

a

> Milwaukee brace for a year before that. I was a gymnast for 11

years,

> so the change in lifestyle was very difficult. I've adjusted quite

> well, and am a school counselor and gymnastics coach. The only

thing

> I am worried about is the constant pain. I feel as though I am too

> young to be in this much pain. Is my back supposed to hurt every

> day?? I have been back to the doctor several times, had dozens of

x-

> rays, and recently, a bone scan. All of the doctors say I'm fine.

How

> can I be fine if I'm in pain everyday? I don't really know what

> answers I keep searching for. I suppose I'm just curious about

what

> my future holds for me. Has anybody experienced similar problems?

> Thanks for the support.

> Kelley

[Guest guest]

That is great that you have found us. It is nice to know that you are not alone in this disease. If you have any questions or just need to talk just let us know. Welcome to our family we are glad you have found us.

in Suffolk