Re: Stanford -Aspirin Desensitization?

[Guest guest]

Many discussions on this forumn regarding the trigger for the onset of samters. If mine wasnt so drastic i prob wouldnt have noticed...,, but never having had any reaction before - after receiving tylenol in the recovery room after having my son and having my first ever allergic reaction. UBianca On Jul 13, 2011, at 9:14 PM, "iloveaview" <iloveaview@...> wrote:

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

[Guest guest]

According to a number of published papers, the most likely explanation is that aspirin sensitivity is a genetically inherited potentiality. Several gene polymorphisms may account for it (for example in the genes coding for leukotriene enzymes). A gene polymorphism is when one has, in some place in a gene, a variant that is slightly different from other people. Everyone has numerous gene polymorphisms - otherwise we would all be very similar to each other - but not all of them affect us in the same way. Then, what is only a potentiality evolves into a pathology because of a trigger or several combined triggers. No one really knows what all AERD triggers are, but, apart from the well-known trigger of taking aspirin/NSAIDs, some papers have suggested viruses, chemicals, allergens, etc. and possibly a combination of these. For instance, some sufferers have described "an infection that never went away" ; others may have started by allergic rhinitis, asthma, etc. From this point on, the idea behind the evolution of the pathology is that the combination of the genes and the environment has created a situation where the upper and/or lower airways mucosa can no longer fulfill their normal barrier function, leading to impaired local immunity, granting easier infection by a number of pathogens, which in turn worsen the original situation, polyps, etc.A vicious circle is established, where a number of germs and the impaired mucosal function keep reinforcing each other and degrading the local situation, to the point where the patient is constantly infected, inflamed, sensitive to everything, etc.The most efficient and radical way to break this vicious circle, at least for the upper airways, is to perform surgery to scrape away the infected, inflamed mucosa and preserve it from triggers and re-infection through the combination of a number of techniques and medications : saline irrigation, allergen desensitization, steroids, leukotriene inhibitors, antihistamines, etc.This situation may or may not involve asthma, skin sensitivity, etc and may also cohabit with a number of other more or less independent pathologies.>> 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>

[Guest guest]

As I have said many times, all of us are different so what symptoms I have had

may not mimic anyone else's disease progression.

I spent many years of strenuous physical activities and numerous broken bones

and other injuries. Back then I found out that pain medication had zero affect

with me so I would take aspirin, lots of it. I would start with 4 325mg pills

and take 4 more every 4 hours. This would help with the pain and, of course the

inflammation. At around 55 years of age, I noticed that when I took an aspirin

my nose would start to run and I would start sneezing. It took awhile to confirm

what was happening so I switched to tylenol, with the same results. My GP was

stumped and suggested I see an ENT. He determined that I had polyps and also did

a complete allergy test. I had zero allergic reactions. He performed the first

surgery. I went back to my usual routine and my SOS soon returned.

This lasted for about two years than the symptoms reappeared. Second surgery and

same recovery. This time it only lasted for 11 months. I still had not been

diagnosed with Samters. After the third surgery, my ENT referred me to the best

allergist in the area. He again checked me for allergies. Again negative on

everything.

One evening I took one 325 mg aspirin for a headache. I immediately started

feeling strange and realized I was having a bad reaction. The wife took me to

the nearby emergency room where I was given a shot of benedryl, oxygen, and

other treatments to get things back under control.

I went back to my allergist and he decided to test me for Samters. He determined

that I was borderline asmatic and with the aspirin reaction confirmed that I has

Samters, which was the first I had heard of this disease. He put me on a routine

of Asmanex, Nasonex, Singulair, Loratadine, flaxseed oil, calcium, and vitamin

D.

Now after three years of this routine, I have had no polyp growth and my SOS is

fine. I avoid aspirin and have not had an asthma attack since my first and only

episode. I still get checked every 6 months but things seem to be under control.

He has recommended against aspirin desens because of my reaction that put me in

the emergency room. He said that he would ONLY feel comfortable doing desens if

I was admitted to a hospital. As it turns out, because of previous injuries and

required corrective surgeries, it turns out that desens would have been a huge

mistake. I have had one knee surgery, two hand surgeries, and major back spinal

fusion. Each one of those surgeries in the past few years would have required

going through the aspirin desens again. With things under control with

medication, I see no reason to change my course of treatment.

As to what caused my foray into Samters, I do not know, and neither do any of

the doctors. It is what it is. I don't think you will find a definitive answer

as to what causes this disease. I have tried to think about anything in my

previous history that would have triggered my reaction to aspirin, and have

found nothing. As I said, this is my experience, which will be different than

everyone else's.

>

> > 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

> >

> >

>

[Guest guest]

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

> >

>

[Guest guest]

PS- I am 47 and just developed this in the last year. I am still trying to

determine what triggered this. I can't pinpoint anything in particular...

> > >

> > > 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

> > >

> >

>

[Guest guest]

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

> > > >

> > >

> >

> >

>

[Guest guest]

I went to Dr Legere in Austin, TX for desense and he was AWESOME! He was the

first doctor I had been to that actually seemed to be able to help me.

[Guest guest]

I just came across a doctor who has suffered from Samter's and he has some

really good stuff posted. Have you heard of him? I am new to this group so I

could be re-posting old info, I don't know...

http://www.sinuses.com/ Dr. Tichenor

> >> > >

> >> > > 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

> >> > >

> >> >

> >>

> >

> >

> >

>

[Guest guest]

I just came across a doctor who has suffered from Samter's and he has some

really good stuff posted. Have you heard of him? I am new to this group so I

could be re-posting old info, I don't know...

http://www.sinuses.com/ Dr. Tichenor

> >> > >

> >> > > 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

> >> > >

> >> >

> >>

> >

> >

> >

>

[Guest guest]

Dr. Tichenor may have been discussed once or twice in the past ; you can search for his name in the archives.There is much useful information on his website, but it is also notable that he used to cling to the "all-fungal" theory of sinusitis, which was popularized by the Mayo Clinic several years ago before being disproved - so not everything that is posted there is to be taken as authoritative and definitive.> > >> > >> > >> > > 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> > >> > >> > >> >> > >> > > > > > > > > >> >>