Re: New Here - Aspirin Desensitization Questions

[Guest guest]

First of all, I live in Lakewood, Colorado and have undergone aspirin desensitization by the best doctor. His name is Dr. Mark Ebadi and is with the practice, Colorado Allergy and Asthma Center. Prior to doing my aspirin desens., I had no sense of smell for about 10 years. I do now! I still deal with sinus infections, but a year and a half after desens. I still do not have any polyps! I also have a wonderful ENT here.

Let me know if you would like more info.

Jane

From: julieryckeley <julieryckeley@...>Subject: New Here - Aspirin Desensitization Questionssamters Date: Thursday, January 1, 2009, 8:48 PM

Hi - I'm new to this group and I've been suffering with Sampter's for about 15 years (yikes!) Specifically I am looking for a treatment option other than prednizone that would restore my sense of smell. I cannot smell or taste at all unless taking prednizone. I am trying to get a referral to undergo aspirin desensitization in Denver, CO. Could you please tell me your stories on how your desensitization treatment, your ongoing treatment and current health? Thanks so much!

[Guest guest]

Hi Jane, thanks for your response! I am really encouraged by what

I've read on this message board so far and by stories like

yours. I am so amazed that doctors don't seem to be very well

informed about Sampters. My own brother is an ENT but he doesn't

know much about aspirin desens. Anyway, I am with Kaiser for

insurance so I am limited by which doctors I can use. My allergist

said that he will refer me for desens. to National Jewish Health

Center in Denver after my next polyp surgery at the end of the

month. Are you still taking aspirin, how much, how long did your

desensitization treatment take?

thanks again,

>

> From: julieryckeley <julieryckeley@...>

> Subject: New Here - Aspirin Desensitization Questions

> samters

> Date: Thursday, January 1, 2009, 8:48 PM

>

>

>

>

>

>

> Hi - I'm new to this group and I've been suffering with Sampter's

for

> about 15 years (yikes!) Specifically I am looking for a treatment

> option other than prednizone that would restore my sense of smell.

I

> cannot smell or taste at all unless taking prednizone. I am trying

to

> get a referral to undergo aspirin desensitization in Denver, CO.

> Could you please tell me your stories on how your desensitization

> treatment, your ongoing treatment and current health? Thanks so

much!

>

[Guest guest]

,

I am thinking that if you go to National Jewish Hospital for desens., they will probably send you to Dr. Ebadi, my doctor. Dr. Ebadi did all of his respiratory research through National Jewish and has a wonderful reputation. He is, however, now in private practice with Colorado Allergy and Asthma Center in Aurora. He is as kind as he is knowledgeable. He is the doctor who connected me with this .group!

My desens. only took one day as my reaction was not significant. They started me at 81mg. of aspirin and then slowly every hour or so raised my level. Once I reached the 200mg. level I had a reaction. I suddenly got stuffy, nose running, and got a severe migraine, which I am prone too. The doctor then waited another 2 hours and once the migraine subsided they gave me 200mg again. This time I didn't react and was able to continue with the increased amounts of aspirin until I reached 325mg. I now take 650mg twice a day.

I have been dealing with a sinus infection for a couple of months without relief, so Dr. Ebadi did a sinus probe and found that a year and half after desens., I sitll do not have any sign of polyps! I as still rejoicing over that wonderful news. I have had 8 polyp surgeries in my lifetime, so he feels that part of my issue with infection is due to all of the scar tissue in my sinuses.

Keep me posted on what doc you find and best of luck on your upcoming surgery. My prayers are with you.

Jane

From: julieryckeley <julieryckeley@...>Subject: Re: New Here - Aspirin Desensitization Questionssamters Date: Friday, January 2, 2009, 2:07 PM

Hi Jane, thanks for your response! I am really encouraged by what I've read on this message board so far and by stories like yours. I am so amazed that doctors don't seem to be very well informed about Sampters. My own brother is an ENT but he doesn't know much about aspirin desens. Anyway, I am with Kaiser for insurance so I am limited by which doctors I can use. My allergist said that he will refer me for desens. to National Jewish Health Center in Denver after my next polyp surgery at the end of the month. Are you still taking aspirin, how much, how long did your desensitization treatment take?thanks again, > > From: julieryckeley <julieryckeley@ ...>> Subject: New Here - Aspirin Desensitization Questions> samters@groups .com> Date: Thursday, January 1, 2009, 8:48 PM> > > > > > > Hi - I'm new to this group and I've been suffering with Sampter's for > about 15 years (yikes!)

Specifically I am looking for a treatment > option other than prednizone that would restore my sense of smell. I > cannot smell or taste at all unless taking prednizone. I am trying to > get a referral to undergo aspirin desensitization in Denver, CO. > Could you please tell me your stories on how your desensitization > treatment, your ongoing treatment and current health? Thanks so much!>

[Guest guest]

I'm brand new here -- not 100% sure I've got Samter's but all signs point that

way -- and am in Boulder -- so another for the local group. I was just given

the name of a Dr. at Natl Jewish Hospital today, but now I'm thinking it might

make sense to go straight to Dr. Ebadi.

> >

> > From: julieryckeley <julieryckeley@ ...>

> > Subject: New Here - Aspirin Desensitization Questions

> > samters@groups .com

> > Date: Thursday, January 1, 2009, 8:48 PM

> >

> >

> >

> >

> >

> >

> > Hi - I'm new to this group and I've been suffering with Sampter's

> for

> > about 15 years (yikes!) Specifically I am looking for a treatment

> > option other than prednizone that would restore my sense of smell.

> I

> > cannot smell or taste at all unless taking prednizone. I am trying

> to

> > get a referral to undergo aspirin desensitization in Denver, CO.

> > Could you please tell me your stories on how your desensitization

> > treatment, your ongoing treatment and current health? Thanks so

> much!

> >

>

[Guest guest]

Dr. Ebadi is my wonderful doctor and I feel he was a Godsend to me. He was recommended to me by my ENT. Dr. Ebadi is so knowledgeable about this disease and has taken a big interest in my case since I started with him almost 3 years ago. I was desensitized to aspirin through his clinic 2 years ago and just had a CT scan showing only minor polyp regrowth, so my daily aspirin therapy continues to work for me. Feel free to contact me by phone if you want to discuss Dr. Ebadi further. 303-718-1738.

Jane

From: thomyris77 <thomyris7@...>Subject: Re: New Here - Aspirin Desensitization Questionssamters Date: Thursday, June 11, 2009, 8:13 PM

I'm brand new here -- not 100% sure I've got Samter's but all signs point that way -- and am in Boulder -- so another for the local group. I was just given the name of a Dr. at Natl Jewish Hospital today, but now I'm thinking it might make sense to go straight to Dr. Ebadi. > > > > From: julieryckeley <julieryckeley@ ...>> > Subject: New Here - Aspirin Desensitization Questions> > samters@groups .com> > Date: Thursday, January 1, 2009, 8:48 PM> > > > > > > > > > > > > > Hi - I'm new to this group and I've been suffering with Sampter's > for > > about 15 years (yikes!) Specifically I am looking for a treatment > > option other than prednizone that would restore my sense of smell. > I > > cannot smell or taste at all unless

taking prednizone. I am trying > to > > get a referral to undergo aspirin desensitization in Denver, CO. > > Could you please tell me your stories on how your desensitization > > treatment, your ongoing treatment and current health? Thanks so > much!> >>

[Guest guest]

I am also in Denver and have Kaiser for insurance. I have seen two ENT's at

Kaiser, and would strongly recommend Dr. Phyllis Bouvier (lin clinic) as an

ENT who is familiar with Samter's and really puts me at ease. When I first saw

her at the beginning of May, she wanted my history from the very beginning -

rather than simply relying on other's notes - and at one point she stopped me

and said " you using more medical terms than I am, and I'm the doctor, that means

you've been in here way too much. We're going to take care of you now. " Most

of us with Samter's have been so frustrated with the process of getting doctors

to pay attention and take action that her response just made me want to shout

hooray! She did surgery a week later and for the first time in years (even with

a previous surgery) I DON'T HAVE A HEADACHE. I am really hopeful and I actually

feel good.

I also really like my allergist with Kaiser - again I've seen others, but Dr.

Pete Cvietusa has been great (He's at the Highlands Ranch clinic). He is very

kind, understanding, knowledgeable and responsive and will answer email

questions and things on the kaiser website. I've been seeing him for a few

years - I started with him before I was diagnosed with Samters. He was the one

who has done my immunotherapy for environmental allergies, sent me to the ENT

for my polyps and diagnosed me when I started reacting to ibuprofen after my

first sinus surgery. So he's seen my Samters develop. He also sent me to

National Jewish for aspirin desensitization. I completed it with Dr. Shalla

Gogate at National Jewish at the end of May - 2 weeks after my surgery. I

haven't had to use my inhaler since. Dr. Gogate is also really nice - she's

seen a lot of people with Samter's and desensitized MANY patients. I reacted at

120mg dose of aspirin with sneezing and congestion and that was it! They were

able to move on to the larger doses after that.

Good luck and Thomyris77 in finding a treatment team in the area that

works for you. If you are in Kaiser, you might want to try Dr. Bouvier and Dr.

Cvietusa.

Jennie

jratico@...

> > >

> > > From: julieryckeley <julieryckeley@ ...>

> > > Subject: New Here - Aspirin Desensitization Questions

> > > samters@groups .com

> > > Date: Thursday, January 1, 2009, 8:48 PM

> > >

> > >

> > >

> > >

> > >

> > >

> > > Hi - I'm new to this group and I've been suffering with Sampter's

> > for

> > > about 15 years (yikes!) Specifically I am looking for a treatment

> > > option other than prednizone that would restore my sense of smell.

> > I

> > > cannot smell or taste at all unless taking prednizone. I am trying

> > to

> > > get a referral to undergo aspirin desensitization in Denver, CO.

> > > Could you please tell me your stories on how your desensitization

> > > treatment, your ongoing treatment and current health? Thanks so

> > much!

> > >

> >

>

[Guest guest]

Thanks so much Jane. I'm going out of town for about a month but may call you

when I get back. It's wonderful for me to discover this group and get some good

information!

> > >

> > > From: julieryckeley <julieryckeley@ ...>

> > > Subject: New Here - Aspirin Desensitization Questions

> > > samters@groups .com

> > > Date: Thursday, January 1, 2009, 8:48 PM

> > >

> > >

> > >

> > >

> > >

> > >

> > > Hi - I'm new to this group and I've been suffering with Sampter's

> > for

> > > about 15 years (yikes!) Specifically I am looking for a treatment

> > > option other than prednizone that would restore my sense of smell.

> > I

> > > cannot smell or taste at all unless taking prednizone. I am trying

> > to

> > > get a referral to undergo aspirin desensitization in Denver, CO.

> > > Could you please tell me your stories on how your desensitization

> > > treatment, your ongoing treatment and current health? Thanks so

> > much!

> > >

> >

>