Im a newbie

[Guest guest]

I did regain my sense of smell (SOS) immediately after surgery. I kept it pretty much for the next 2 years. I am currently in the no SOS category. It has been 2 years and 8 months since my surgery.

Good Luck

Marcus

[Guest guest]

Hi and welcome to the forum. My sense of smell returned only after

prednisone but then every case is different. I had surgery on July 1 then

after two weeks a crash dose of pred. for about two weeks. My sense of smell

is still here but only just.

im a newbie

hi there. im newly diagnosed with possible samters and due for surgery

soon. my question to anyone out hter is: have you gotten your sense of

smell back or is that too much to hope for?

thanks

[Guest guest]

Hey. I'm saying this because doctors never say this and there have

been a couple newbies talking about surgery lately. Please be aware

that surgery is not the be-all and end-all. (Doctors like to bandy

about this three-year figure, gleaned from God-knows-what.) Some of

us - not all of us, but some of us - have immediate or near-

immediate relapse. My polyps returned immediately after my first

surgery and two weeks after my second. I plan never to go through

that again.

If you haven't tried Singulair, please try it before going through

surgery. In my case, it's made at least my nose manageable. My

asthma is still completely out of control, but it was immediately

after both surgeries anyway.

I just felt like I should say something in case no one else has.

Surgery may work great for you, in which case completely ignore me.

But for some of us, it doesn't.

To answer your question, I didn't get my sense of smell back, but as

both surgeries were unsuccessful, it's probably related.

> hi there. im newly diagnosed with possible samters and due for

surgery

> soon. my question to anyone out hter is: have you gotten your

sense of

> smell back or is that too much to hope for?

> thanks

[Guest guest]

Hi and welcome! Have you exhausted all other avenues of treatment? I

had five surgeries in three years. Mostly because I ended up with a

very large mucocele that eroded through my orbit floor, but also

because the poylp disease keeps coming back right after anyway. I

currently use singulair and daily prednisone, allegra, nasal washes,

zantac, albuterol, and pulmocort. This is the first year I have been

surgery free. I only have a sense of smell when on prednisone. Where

are you located and who is your ENT? Good luck and let us know how

things are going. Trudy.

> hi there. im newly diagnosed with possible samters and due for

surgery

> soon. my question to anyone out hter is: have you gotten your sense

of

> smell back or is that too much to hope for?

> thanks

[Guest guest]

On 8/25/05 8:02 AM, " jessafeiler3 " <jessafeiler@...> wrote:

Hey. I'm saying this because doctors never say this and there have

been a couple newbies talking about surgery lately. Please be aware

that surgery is not the be-all and end-all. (Doctors like to bandy

about this three-year figure, gleaned from God-knows-what.) Some of

us - not all of us, but some of us - have immediate or near-

immediate relapse. My polyps returned immediately after my first

surgery and two weeks after my second. I plan never to go through

that again.

I agree that surgery is not a cure. I’ve now had three with increasing satisfaction. My asthma did not get bad until after the surgery. I feel that the filters (turbinates?) in my nose that used to make me sneeze aren’t there, so now I cough instead. I needed to remove the polyps because I was fully occluded for a year. I wish I could have reversed their growth earlier on.

My theory on this malady is to sooth the whole system to become less over-reactive to the myriad of triggers. The drugs were necessary to establish a calm but I resist constant maintenance drugs. I believe that a change in life style and reduced exposure to triggers is the key to system health.

The doctors could only help with symptoms. It is this site and the research it led me to which really helped me back to a normal life and a SOS.

I’m sorry this is vague. I’m still trying to understand it myself. But, I am feeling much stronger and I hope you do too.

Pam

P.S. Singulair does nothing for me, even at double the dose.

--

[Guest guest]

It's a shame that Singulair doesn't work for you. For me, it's made

my nose so much more manageable. I mean, I'm still blowing my nose

constantly and I can't bend my head over, but other than that, it's

vastly improved. Gone are the days when I used to sit all day with

one tissue at my nose and my other hand in the tissue box,

transferring every few seconds. Don't know what I would have done

without Singulair. I was going completely nuts for a while in there.

I still have a lot of polyp problems and everyone is pushing

surgery, surgery, surgery, so my retaliation has just been to stop

going to the doctor except to get refills. Not the most mature

response, I know.

I also noticed an increase in asthma post-surgery. I'm not sure

about the turbinate thing for me, because I don't really have

allergic coughing or asthma that appears to be allergy-induced.

(Well, it's actually sort of induced by...you know...breathing and,

like, moving, and possibly sitting completely still and, well,

sleeping, so who knows...)

I think the reason I keep disappearing from the boards is that a lot

of people have found things that work and become very gung-ho about

them being the " one true way. " It's the case with all health-related

boards, I've found. Even for the really lame things, like back

when I was having post-prednisone laser surgery every week on my

stupid foot infection. I just haven't had as much success with drug

regimens and surgery and all of that and prednisone ruined two years

of my life (and my body permanently).

I dunno. My life is total s*** right now and I'm resisting taking

sick days because I only get five and I know that winter is always

hell, especially for the asthma, as I'm cold-triggered. So, for now,

work, sleep, work, sleep, and on and on. I hate this stupid disease.

I'm 23. I'm supposed to be going out on blind dates and drinking

Margaritas (which I found out last night are a really BAD idea, so

brief warning to those who are iffy about tequila).

Ugh. I'm depressing. Have a nice Friday everyone. Almost done!

[Guest guest]

I have

been on Singular for three years now and I feel that it has helped some,

recently my PCP added Astelin to my regiment and that seams to have

helped. I take Singular, Adviar, Astelin,

Flonase and Albuteral. I am

waiting to get my surgery date, this will be my 7th I have found

that after surgery and with all the medication and nasal washings that I can go

anywhere between 3 and 6 years before I need surgery again. Until I found this sight I had never

heard of denses but it sounds like it works for a lot so I am going to talk

with my ENT and PCP to see if that is something that I should do after

surgery. The problem that I have

is that while I have finally found an ENT that believes me when I say that I am

in pain and agrees with the CT that I had done. I am not sure that he is up on all the latest and greatest

when it comes to Samters but I am defiantly going to talk with him and see what

he has to say.

Hope that

everyone has a great Friday and a very good weekend!

Marjory

-----Original

Message-----

From: samters

[mailto:samters ]On Behalf Of jessafeiler3

Sent: Friday, August 26, 2005 5:45

AM

samters

Subject: Re: im a newbie

It's a shame that Singulair doesn't work for you. For me, it's

made

my nose so much more manageable. I mean, I'm still blowing my nose

constantly and I can't bend my head over, but other than that, it's

vastly improved. Gone are the days when I used to sit all day with

one tissue at my nose and my other hand in the tissue box,

transferring every few seconds. Don't know what I would have done

without Singulair. I was going completely nuts for a while in there.

I still have a lot of polyp problems and everyone is pushing

surgery, surgery, surgery, so my retaliation has just been to stop

going to the doctor except to get refills. Not the most mature

response, I know.

I also noticed an increase in asthma post-surgery. I'm not sure

about the turbinate thing for me, because I don't really have

allergic coughing or asthma that appears to be allergy-induced.

(Well, it's actually sort of induced by...you know...breathing and,

like, moving, and possibly sitting completely still and, well,

sleeping, so who knows...)

I think the reason I keep disappearing from the boards is that a lot

of people have found things that work and become very gung-ho about

them being the " one true way. " It's the case with all

health-related

boards, I've found. Even for the really lame things, like back

when I was having post-prednisone laser surgery every week on my

stupid foot infection. I just haven't had as much success with drug

regimens and surgery and all of that and prednisone ruined two years

of my life (and my body permanently).

I dunno. My life is total s*** right now and I'm resisting taking

sick days because I only get five and I know that winter is always

hell, especially for the asthma, as I'm cold-triggered. So, for now,

work, sleep, work, sleep, and on and on. I hate this stupid disease.

I'm 23. I'm supposed to be going out on blind dates and drinking

Margaritas (which I found out last night are a really BAD idea, so

brief warning to those who are iffy about tequila).

Ugh. I'm depressing. Have a nice Friday everyone. Almost done!

[Guest guest]

I have not got my sense of smell back. The only way I can smell is if I am on Prednisone daily like 40-60 mg of it. I am hoping that if I have a 2nd sinus surgery and then get desen. right after that might make me a lot better, but after hearing everyone elses stories it might be a hopeless situation.

Jen <soniarobins@...> wrote:

Hi and welcome to the forum. My sense of smell returned only afterprednisone but then every case is different. I had surgery on July 1 thenafter two weeks a crash dose of pred. for about two weeks. My sense of smellis still here but only just.-----Original Message-----From: samters [mailto:samters ] On Behalf OfsmelleasySent: Thursday, 25 August 2005 8:29 PMsamters Subject: im a newbiehi there. im newly diagnosed with possible samters and due for surgery soon. my question to anyone out hter is: have you gotten your sense of smell back or is that too much to hope for?thanks

[Guest guest]

Jess...hang in there. I know what you mean about life being s***

sometimes. I was 23 when I got Samters and it has now been a daily

part of my life for a long time. I applaud your work ethic. I found

out recently also that alcohol is somehow connected to a negative

response in my body. Besides the usual I mean...lol. My sinus/nasal

passage literally filled up by morning which hasn't happened in a

year. I spent the day trying to recover and that was on three

whiskey/diets. Wow. Lesson learned. I hear you about the be all and

end all for cures and treatments. I am the same way about desense

that you are about surgery. I cannot participate in it and have been

told that by many of the top surgeons in this country, and it makes

me sooooo jealous that others find relief when they get

desensitized. To each his own I guess. I figure if it wasn't this I

was dealing with it would be something else, and maybe something

else would be worse. As my daughter-in-law says when I say " My life

sucks " .... " It could suck worse " . The thing that has helped me the

most in all of this has nothing to do with surgery, meds,

treatments. It is finding that place where I live the best life I

can within the perimeters of this disease. That came through

counseling, reading, and meditating. By the way, you are not

depressing...it is good to share. Trudy.

[Guest guest]

Hi im a newbie here ,iv been reading back on all the old messages and

i dont think i can understand half of it, poor me lol.

Iv only been on levothyroxine for 2 weeks 50mcg a day.

I hope to learn alot here and maybe make some friends, i feel a bit on

my own.

[Guest guest]

Hi ,

It takes a long time, if ever to learn about the whole

thyroid thing. Most thyroid patients don't have to do all the

complicated stuff you will see here- they just take their thyroxine and

are fine- we tend to be the hard cases where things have gone wrong, but

it is as well to know the basic functioning in case you do come up

against problems. http://www.endocrineweb.com has a lovely clear

illustrated article which shows how a healthy thyroid should work as

well as all the stuff on the TPA-UK website.

Subject: Im a newbie

Hi im a newbie here ,iv been reading back on all the old messages and

i dont think i can understand half of it, poor me lol.

Iv only been on levothyroxine for 2 weeks 50mcg a day.

I hope to learn alot here and maybe make some friends, i feel a bit on

my own.

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

TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

[Guest guest]

HI , welcome to the group. have you the results of any blood tests.? ask your doctor for these if you don`t no them. post them here and include the ranges. this will help us to understand where you are in the world of hypothyroidism lol. . If you have any questionsthen feel free to ask away. hope to be able to help you understand things a bit better,.angel. who have learnt a lot from this group. lol lol.