RE: ear symptom improvement with desensitization and samterites over 60

[Guest guest]

My father came down with Samters in 1961 at the age of 41 and lived with the

problems until he passed away at the age of 84. We lived in west central

Minnesota, in an area that the Mayo Clinic refers to as the polyp triangle.

The problem with my asthma attacks was that 75% of them resulted in

blackouts. In 1995 an ENT instructor at Mayo told me that they refer their

difficult allergy patients to Allergy Associates of La Crosse. I had my

first visit with Dr. in Oct. 1995 and I've only had four asthma

attacks since and the were caused by aspirin or NSAIDs. Dr. retired

this year but I think that they still have six allergists at the clinic.

Below is the link to their web-site.

http://www.allergy-solutions.com/

ear symptom improvement with desensitization and

samterites over 60

I've mentioned before than my father also has Samters. Now that I've been

desensitized he is considering it, but wants to know if it will help his ear

symtoms (ear infections, tinnitis, congestion) as his sinus symptoms are

controlled by Pulmicort and his asthma is not flaring due to Advair (though

his lungs are scarred over the years, so he is very short of breath). Has

anyone with ear symptoms seen improvement after desensitization?

My dad is also convinced that there aren't many people his age out there

with Samters - he's in his 60's. He was part of an original study group on

Samters at Mayo Clinic back in the 1960's, but they did not follow the

patients over time and didn't give them a very good prognosis as far as life

span. I'd love to convince him there are still a lot of samterites his age

around so would love to hear from those of you living with the disease for

30+ years now.

I'll try to get him on the group!

Jennie

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

[Guest guest]

Why does Mayo in Minnesota call it the polyp triangle?

Tami

RE: ear symptom improvement with desensitization and samterites over 60

My father came down with Samters in 1961 at the age of 41 and lived with theproblems until he passed away at the age of 84. We lived in west centralMinnesota, in an area that the Mayo Clinic refers to as the polyp triangle.The problem with my asthma attacks was that 75% of them resulted inblackouts. In 1995 an ENT instructor at Mayo told me that they refer theirdifficult allergy patients to Allergy Associates of La Crosse. I had myfirst visit with Dr. in Oct. 1995 and I've only had four asthmaattacks since and the were caused by aspirin or NSAIDs. Dr. retiredthis year but I think that they still have six allergists at the clinic.Below is the link to their web-site.http://www.allergy-solutions.com/-----Original Message-----From: samters [mailto:samters ]On BehalfOf gypsymouserocketmailSent: Monday, July 06, 2009 10:07 AMsamters Subject: ear symptom improvement with desensitization andsamterites over 60I've mentioned before than my father also has Samters. Now that I've beendesensitized he is considering it, but wants to know if it will help his earsymtoms (ear infections, tinnitis, congestion) as his sinus symptoms arecontrolled by Pulmicort and his asthma is not flaring due to Advair (thoughhis lungs are scarred over the years, so he is very short of breath). Hasanyone with ear symptoms seen improvement after desensitization?My dad is also convinced that there aren't many people his age out therewith Samters - he's in his 60's. He was part of an original study group onSamters at Mayo Clinic back in the 1960's, but they did not follow thepatients over time and didn't give them a very good prognosis as far as lifespan. I'd love to convince him there are still a lot of samterites his agearound so would love to hear from those of you living with the disease for30+ years now.I'll try to get him on the group!Jennie------------------------------------

[Guest guest]

Hello

I’m 50 years old and I’ve had

Samters for 40 years. Many operations to remove polyps, I use Rhinocord,

Flixotide and claritine. I have ear problems, such as infections, fluid in

middle ear, decreased hearing in one ear, tinnitus. I have not been

desensitised because I’m prone tp bleeding. I think my symptoms decreased

to some extent after menopause.

Berna

From:

samters [mailto:samters ] On Behalf Of gypsymouse@...

Sent: Monday, July 06, 2009 6:07

PM

samters

Subject: ear symptom

improvement with desensitization and samterites over 60

I've mentioned before than my father also has Samters.

Now that I've been desensitized he is considering it, but wants to know if it

will help his ear symtoms (ear infections, tinnitis, congestion) as his sinus

symptoms are controlled by Pulmicort and his asthma is not flaring due to

Advair (though his lungs are scarred over the years, so he is very short of

breath). Has anyone with ear symptoms seen improvement after desensitization?

My dad is also convinced that there aren't many people his age out there with

Samters - he's in his 60's. He was part of an original study group on Samters

at Mayo Clinic back in the 1960's, but they did not follow the patients over

time and didn't give them a very good prognosis as far as life span. I'd love

to convince him there are still a lot of samterites his age around so would

love to hear from those of you living with the disease for 30+ years now.

I'll try to get him on the group!

Jennie

[Guest guest]

Mayo's polyp study in 1999 credited 74% of nasal polyps to mold, and I believe that when Mayo was analyzing their population samplings that they found the highest concentration of polyps in this "Polyp Triangle" area. The "polyp triangle" includes most of the southern 1/3 of Minnesota. The characteristics of this area is a water level and soil make-up that permits water to stand above ground for long periods of time, which causes mold. When you drive through this area in May, June, July, etc. and see water standing in the farm fields and stagnant swampy areas, that's were the mold is growing. The general area stretches from Albert Lee in the south to St. Cloud in the north, and Rochester in the east to the South Dakota's border in the west. When the wind blows the mold spores are spread over a pretty large area.

-----Original Message-----From: samters [mailto:samters ]On Behalf Of Tami KlumpyanSent: Monday, July 06, 2009 2:46 PMsamters Subject: Re: ear symptom improvement with desensitization and samterites over 60

Why does Mayo in Minnesota call it the polyp triangle?

Tami

RE: ear symptom improvement with desensitization and samterites over 60

My father came down with Samters in 1961 at the age of 41 and lived with theproblems until he passed away at the age of 84. We lived in west centralMinnesota, in an area that the Mayo Clinic refers to as the polyp triangle.The problem with my asthma attacks was that 75% of them resulted inblackouts. In 1995 an ENT instructor at Mayo told me that they refer theirdifficult allergy patients to Allergy Associates of La Crosse. I had myfirst visit with Dr. in Oct. 1995 and I've only had four asthmaattacks since and the were caused by aspirin or NSAIDs. Dr. retiredthis year but I think that they still have six allergists at the clinic.Below is the link to their web-site.http://www.allergy-solutions.com/-----Original Message-----From: samters [mailto:samters ]On BehalfOf gypsymouserocketmailSent: Monday, July 06, 2009 10:07 AMsamters Subject: ear symptom improvement with desensitization andsamterites over 60I've mentioned before than my father also has Samters. Now that I've beendesensitized he is considering it, but wants to know if it will help his earsymtoms (ear infections, tinnitis, congestion) as his sinus symptoms arecontrolled by Pulmicort and his asthma is not flaring due to Advair (thoughhis lungs are scarred over the years, so he is very short of breath). Hasanyone with ear symptoms seen improvement after desensitization?My dad is also convinced that there aren't many people his age out therewith Samters - he's in his 60's. He was part of an original study group onSamters at Mayo Clinic back in the 1960's, but they did not follow thepatients over time and didn't give them a very good prognosis as far as lifespan. I'd love to convince him there are still a lot of samterites his agearound so would love to hear from those of you living with the disease for30+ years now.I'll try to get him on the group!Jennie------------------------------------

[Guest guest]

Hi Jennie

Yes, I'm 67, despite Samters + Tinnitus I still coach & umpire field hockey.

Before emigrating to NZ, I was part of a study group at Manchester University.

Regards

Email slow, clunky, unreliable? Switch to Xtra Mail, New Zealand's new email address.

[Guest guest]

That's pretty freaky. Maybe they should spray the area with fungicides. I had mold in my house for years and had it removed a few years ago. I ripped out almost all of my carpet in the house etc. I still believe there is some mold remaining in my home. On humid days the smell just about sends me over the edge. And if I can smell it, I just wonder how strong others smell it. I am a wishful possitive thinker and believe I will be in a new home down the road that I will have specially built to ward off the growth of mold spores.

Thanks for the info. I was part of the study at mayo in the mid to late 90's. I did not do well with their treatment though.

Tami

RE: ear symptom improvement with desensitization and samterites over 60

My father came down with Samters in 1961 at the age of 41 and lived with theproblems until he passed away at the age of 84. We lived in west centralMinnesota, in an area that the Mayo Clinic refers to as the polyp triangle.The problem with my asthma attacks was that 75% of them resulted inblackouts. In 1995 an ENT instructor at Mayo told me that they refer theirdifficult allergy patients to Allergy Associates of La Crosse. I had myfirst visit with Dr. in Oct. 1995 and I've only had four asthmaattacks since and the were caused by aspirin or NSAIDs. Dr. retiredthis year but I think that they still have six allergists at the clinic.Below is the link to their web-site.http://www.allergy-solutions.com/-----Original Message-----From: samters [mailto:samters ]On BehalfOf gypsymouserocketmailSent: Monday, July 06, 2009 10:07 AMsamters Subject: ear symptom improvement with desensitization andsamterites over 60I've mentioned before than my father also has Samters. Now that I've beendesensitized he is considering it, but wants to know if it will help his earsymtoms (ear infections, tinnitis, congestion) as his sinus symptoms arecontrolled by Pulmicort and his asthma is not flaring due to Advair (thoughhis lungs are scarred over the years, so he is very short of breath). Hasanyone with ear symptoms seen improvement after desensitization?My dad is also convinced that there aren't many people his age out therewith Samters - he's in his 60's. He was part of an original study group onSamters at Mayo Clinic back in the 1960's, but they did not follow thepatients over time and didn't give them a very good prognosis as far as lifespan. I'd love to convince him there are still a lot of samterites his agearound so would love to hear from those of you living with the disease for30+ years now.I'll try to get him on the group!Jennie------------------------------------

[Guest guest]

I'd add to this that my husband who has Samters also traveled to Mayo and rinsed his sinuses with the anti-fungal treatment for over a year with absolutely no success.

samters From: tami1961@...Date: Tue, 7 Jul 2009 09:19:05 -0500Subject: Re: ear symptom improvement with desensitization and samterites over 60

That's pretty freaky. Maybe they should spray the area with fungicides. I had mold in my house for years and had it removed a few years ago. I ripped out almost all of my carpet in the house etc. I still believe there is some mold remaining in my home. On humid days the smell just about sends me over the edge. And if I can smell it, I just wonder how strong others smell it. I am a wishful possitive thinker and believe I will be in a new home down the road that I will have specially built to ward off the growth of mold spores.

Thanks for the info. I was part of the study at mayo in the mid to late 90's. I did not do well with their treatment though.

Tami

RE: ear symptom improvement with desensitization and samterites over 60

My father came down with Samters in 1961 at the age of 41 and lived with theproblems until he passed away at the age of 84. We lived in west centralMinnesota, in an area that the Mayo Clinic refers to as the polyp triangle.The problem with my asthma attacks was that 75% of them resulted inblackouts. In 1995 an ENT instructor at Mayo told me that they refer theirdifficult allergy patients to Allergy Associates of La Crosse. I had myfirst visit with Dr. in Oct. 1995 and I've only had four asthmaattacks since and the were caused by aspirin or NSAIDs. Dr. retiredthis year but I think that they still have six allergists at the clinic.Below is the link to their web-site.http://www.allergy-solutions.com/-----Original Message-----From: samters [mailto:samters ]On BehalfOf gypsymouserocketmailSent: Monday, July 06, 2009 10:07 AMsamters Subject: ear symptom improvement with desensitization andsamterites over 60I've mentioned before than my father also has Samters. Now that I've beendesensitized he is considering it, but wants to know if it will help his earsymtoms (ear infections, tinnitis, congestion) as his sinus symptoms arecontrolled by Pulmicort and his asthma is not flaring due to Advair (thoughhis lungs are scarred over the years, so he is very short of breath). Hasanyone with ear symptoms seen improvement after desensitization?My dad is also convinced that there aren't many people his age out therewith Samters - he's in his 60's. He was part of an original study group onSamters at Mayo Clinic back in the 1960's, but they did not follow thepatients over time and didn't give them a very good prognosis as far as lifespan. I'd love to convince him there are still a lot of samterites his agearound so would love to hear from those of you living with the disease for30+ years now.I'll try to get him on the group!Jennie------------------------------------

[Guest guest]

Jennie, I am 65 years old and was diagnosed with Samters in 1972 although we didn't call it that. My first surgery was that year. I have no SOS, rinse with Meilmed once daily. Use Flonase in the AM after rinse. No prednisone, ever, and very seldom antibiotics. Never desensitized. Use Proair and Flovent for asthma. Continuous ear ringing that seems like brain ringing rather than ear. Surgery occasionally and actually breathe quite well. I go to the Health Zone Saint Francis Hospital every day to exercise. (Also have unrelated diabetes and breast cancer and gout and HBP and glaucoma.) I'm really interested in the pulmicort drops to see if I can regain my SOS. Jane in Tulsa, OK

From: "gypsymouse@..." <jratico@...>samters Sent: Monday, July 6, 2009 10:06:34 AMSubject: ear symptom improvement with desensitization and samterites over 60

I've mentioned before than my father also has Samters. Now that I've been desensitized he is considering it, but wants to know if it will help his ear symtoms (ear infections, tinnitis, congestion) as his sinus symptoms are controlled by Pulmicort and his asthma is not flaring due to Advair (though his lungs are scarred over the years, so he is very short of breath). Has anyone with ear symptoms seen improvement after desensitization?My dad is also convinced that there aren't many people his age out there with Samters - he's in his 60's. He was part of an original study group on Samters at Mayo Clinic back in the 1960's, but they did not follow the patients over time and didn't give them a very good prognosis as far as life span. I'd love to convince him there are still a lot of samterites his age around so would love to hear from those of you living with the disease for 30+ years now.I'll try to get him on the

group!Jennie