Re: Re: Stanford -Aspirin Desensitization?

July 30, 2011

I am newly diagnosed as wellAbout a year now .. Haven't smelled since before Christmas. I miss my SOS so very much Went to a dr at Baylor to inquire about desensitization and he said I wasn't "bad off enough" and when I asked about salicilates and giving me a low sal diet he laughed and said everything gas salicilates and that only the salicylates from the tree that they get aspirin from is the culprit and I should just avoid aspirinThis is frustrating to say the leastMostly because i haven't found any helpI'm in Texas still searching for dr to help Sent from my iPhoneOn Jul 30, 2011, at 3:38 AM, "iloveaview" <iloveaview@...> wrote:

Thanks very much! What you have written summarizes various things I have read. I was surprized that I have this disorder as I've been healthy most of my life with no allergies or asthma ever. (skin allergy test showed no allergic reaction to anything).

I am a sommelier and wine shop owner and really need my smell for my living! Luckily, I found out I have Samter's early on -- really by mistake. I took an ibuprofen hoping to reduce the swelling in my nasal passages and had a horrible reaction. I just happened to mention it to my ENT at the appt when he discovered the polyps and he told me I probably have Samters.

So, next for me is balloon rhinoplasty and aspirin desensitization...

Luckily, I can smell right now, but only thanks to prednisone. Thank god for prednisone!!

My best wishes ad good luck to everyone. - Sue

> >

> > Hi--

> >

> > I was recently diagnosed with Samters. I live in the Northern Ca area,

> and my doc recommended aspirin desens at Stanford. I have not seen

> Stanford listed as a resource for this and wanted to know if anyone here

> has had their desens done there. If so, what was your experience?

> >

> > Also, I have done a lot of research about what this disease is and

> what is occuring in the body when a person has Samters, but I have been

> unable to find anything that explains what CAUSES this or what may have

> triggered it in the first place. Any thoughts?

> >

> > Thanks very much

> >

>

July 31, 2011

Thanks sueGood luck to you tooPs I'm going to be47 next weekSent from my iPhoneOn Jul 30, 2011, at 12:02 PM, "iloveaview" <iloveaview@...> wrote:

Hi-- I lost my smell for a month, and the docs didn't seemed too concerned. Finally, at my second ENT appt (and after seeing an allergist and general doctor twice) the ENT gave me a smell test. I failed it completely. I mentioned I had a lot of pressure at the top of my nose too -- he then looked up into my sinsuses and saw the polyps. That's when I mentioned my reaction to ibuprofen, and it all came together. I had a CT scan, and it showed polys everywhere.

I had also been diagnosed with asthma earlier in the year.

I would recommend looking on this site for ENT's in the Texas area familiar with Samters -- I remember seeing some posts. A good ENT will be able to help you.

Prednisone helped me tremendously -- when you find your ENT, I'm sure he/she will recommend that. As soon as my ENT saw the polyps, he immediately told me that I would get my smell back with a burst/tapered dose of prednisonne. (and I did!)

Losing the SOS is horrible. I am a sommelier and foodie, and it made my live completely miserable, so I know what you are going through. Good luck, and hopefully you will find a good ENT and hopefully the predisone will help you. (Also, the sinus rinse helps too once the polyps have shrunk from the predisone.)

- Sue

> > > >

> > > > Hi--

> > > >

> > > > I was recently diagnosed with Samters. I live in the Northern Ca area,

> > > and my doc recommended aspirin desens at Stanford. I have not seen

> > > Stanford listed as a resource for this and wanted to know if anyone here

> > > has had their desens done there. If so, what was your experience?

> > > >

> > > > Also, I have done a lot of research about what this disease is and

> > > what is occuring in the body when a person has Samters, but I have been

> > > unable to find anything that explains what CAUSES this or what may have

> > > triggered it in the first place. Any thoughts?

> > > >

> > > > Thanks very much

> > > >

> > >

> >

>

July 31, 2011

Where is Texas? I'm in Dallas and I use Dr. Briggs in Arlington. If he is too far away for you, a call to his office might net you a referral to someone else who might be able to help you.CrusherFrom: "aio_cps@..." <aio_cps@...>"samters " <samters >Cc: "samters "

<samters >Sent: Saturday, July 30, 2011 9:59 AMSubject: Re: Re: Stanford -Aspirin Desensitization?

I am newly diagnosed as wellAbout a year now .. Haven't smelled since before Christmas. I miss my SOS so very much Went to a dr at Baylor to inquire about desensitization and he said I wasn't "bad off enough" and when I asked about salicilates and giving me a low sal diet he laughed and said everything gas salicilates and that only the salicylates from the tree that they get aspirin from is the culprit and I should just avoid aspirinThis is frustrating to say the leastMostly because i haven't found any helpI'm in Texas still searching for dr to help Sent from my iPhoneOn Jul 30, 2011, at 3:38 AM, "iloveaview" <iloveaview@...> wrote:

Thanks very much! What you have written summarizes various things I have read. I was surprized that I have this disorder as I've been healthy most of my life with no allergies or asthma ever. (skin allergy test showed no allergic reaction to anything).

I am a sommelier and wine shop owner and really need my smell for my living! Luckily, I found out I have Samter's early on -- really by mistake. I took an ibuprofen hoping to reduce the swelling in my nasal passages and had a horrible reaction. I just happened to mention it to my ENT at the appt when he discovered the polyps and he told me I probably have Samters.

So, next for me is balloon rhinoplasty and aspirin desensitization...

Luckily, I can smell right now, but only thanks to prednisone. Thank god for prednisone!!

My best wishes ad good luck to everyone. - Sue

> >

> > Hi--

> >

> > I was recently diagnosed with Samters. I live in the Northern Ca area,

> and my doc recommended aspirin desens at Stanford. I have not seen

> Stanford listed as a resource for this and wanted to know if anyone here

> has had their desens done there. If so, what was your experience?

> >

> > Also, I have done a lot of research about what this disease is and

> what is occuring in the body when a person has Samters, but I have been

> unable to find anything that explains what CAUSES this or what may have

> triggered it in the first place. Any thoughts?

> >

> > Thanks very much

> >

>

July 31, 2011

Some doctors egos really piss me off.if they lost one of their senses and inability to breathe maybe theyd have a little more empathy.Bianca On Jul 31, 2011, at 2:41 PM, Crusher Miler <crusher75060@...> wrote:

Where is Texas? I'm in Dallas and I use Dr. Briggs in Arlington. If he is too far away for you, a call to his office might net you a referral to someone else who might be able to help you.CrusherFrom: "aio_cps@..." <aio_cps@...>"samters " <samters >Cc: "samters "

<samters >Sent: Saturday, July 30, 2011 9:59 AMSubject: Re: Re: Stanford -Aspirin Desensitization?

I am newly diagnosed as wellAbout a year now .. Haven't smelled since before Christmas. I miss my SOS so very much Went to a dr at Baylor to inquire about desensitization and he said I wasn't "bad off enough" and when I asked about salicilates and giving me a low sal diet he laughed and said everything gas salicilates and that only the salicylates from the tree that they get aspirin from is the culprit and I should just avoid aspirinThis is frustrating to say the leastMostly because i haven't found any helpI'm in Texas still searching for dr to help Sent from my iPhoneOn Jul 30, 2011, at 3:38 AM, "iloveaview" <iloveaview@...> wrote:

Thanks very much! What you have written summarizes various things I have read. I was surprized that I have this disorder as I've been healthy most of my life with no allergies or asthma ever. (skin allergy test showed no allergic reaction to anything).

I am a sommelier and wine shop owner and really need my smell for my living! Luckily, I found out I have Samter's early on -- really by mistake. I took an ibuprofen hoping to reduce the swelling in my nasal passages and had a horrible reaction. I just happened to mention it to my ENT at the appt when he discovered the polyps and he told me I probably have Samters.

So, next for me is balloon rhinoplasty and aspirin desensitization...

Luckily, I can smell right now, but only thanks to prednisone. Thank god for prednisone!!

My best wishes ad good luck to everyone. - Sue

> >

> > Hi--

> >

> > I was recently diagnosed with Samters. I live in the Northern Ca area,

> and my doc recommended aspirin desens at Stanford. I have not seen

> Stanford listed as a resource for this and wanted to know if anyone here

> has had their desens done there. If so, what was your experience?

> >

> > Also, I have done a lot of research about what this disease is and

> what is occuring in the body when a person has Samters, but I have been

> unable to find anything that explains what CAUSES this or what may have

> triggered it in the first place. Any thoughts?

> >

> > Thanks very much

> >

>

July 31, 2011

WELL SAID!!!!!

I couldn't agree with you more! If they had to suffer just one week of what we had to endure, there'd be a cure within a very brief period of time.

samters From: bianca_f75@...Date: Sun, 31 Jul 2011 15:49:13 -0800Subject: Re: Re: Stanford -Aspirin Desensitization?

Some doctors egos really piss me off.if they lost one of their senses and inability to breathe maybe theyd have a little more empathy.Bianca

On Jul 31, 2011, at 2:41 PM, Crusher Miler <crusher75060@...> wrote:

Where is Texas? I'm in Dallas and I use Dr. Briggs in Arlington. If he is too far away for you, a call to his office might net you a referral to someone else who might be able to help you.

Crusher

From: "aio_cps@..." <aio_cps@...>"samters " <samters >Cc: "samters " <samters >Sent: Saturday, July 30, 2011 9:59 AMSubject: Re: Re: Stanford -Aspirin Desensitization?

I am newly diagnosed as well

About a year now .. Haven't smelled since before Christmas. I miss my SOS so very much

Went to a dr at Baylor to inquire about desensitization and he said I wasn't "bad off enough" and when I asked about salicilates and giving me a low sal diet he laughed and said everything gas salicilates and that only the salicylates from the tree that they get aspirin from is the culprit and I should just avoid aspirin

This is frustrating to say the least

Mostly because i haven't found any help

I'm in Texas still searching for dr to help

Sent from my iPhone

On Jul 30, 2011, at 3:38 AM, "iloveaview" <iloveaview@...> wrote:

Thanks very much! What you have written summarizes various things I have read. I was surprized that I have this disorder as I've been healthy most of my life with no allergies or asthma ever. (skin allergy test showed no allergic reaction to anything). I am a sommelier and wine shop owner and really need my smell for my living! Luckily, I found out I have Samter's early on -- really by mistake. I took an ibuprofen hoping to reduce the swelling in my nasal passages and had a horrible reaction. I just happened to mention it to my ENT at the appt when he discovered the polyps and he told me I probably have Samters. So, next for me is balloon rhinoplasty and aspirin desensitization...Luckily, I can smell right now, but only thanks to prednisone. Thank god for prednisone!! My best wishes ad good luck to everyone. - Sue> >> > Hi--> >> > I was recently diagnosed with Samters. I live in the Northern Ca area,> and my doc recommended aspirin desens at Stanford. I have not seen> Stanford listed as a resource for this and wanted to know if anyone here> has had their desens done there. If so, what was your experience?> >> > Also, I have done a lot of research about what this disease is and> what is occuring in the body when a person has Samters, but I have been> unable to find anything that explains what CAUSES this or what may have> triggered it in the first place. Any thoughts?> >> > Thanks very much> >>

July 31, 2011

Really two senses, smell and taste. Not to mention facial pain for many of us, plus all the time and money spent trying to find answers.On Jul 31, 2011, at 5:49 PM, Bianca wrote: