RE: Re: Complications of not having a sinus surgery

[Guest guest]

Hello group, It has been a while since I have responded, although I have been reading all posts. I have been waiting to meet with a new doctor who just joined practice with my current allergist. Being from NH I have not had much success so far in finding doctors that are familiar with Samter's. I finally met with this new doctor and he actually has done quite a bit of work with Samter's! He seems to know what he is talking about and has options for me to try and seems positive that we can get things under control. One new thing that I am doing is adding a rhinocort respule (used in ventolators) to my nasal saline rinse. He feels that this is much more effective than the standard nasal sprays. I have to agree. I never felt confident that the steroid sprays were going where they needed to. I know the saline rinse goes into my sinuses because I can feel it.

I think it helps. It doesn't seem to have any negatives. I have been off and on prednisone quite a bit this last year and empathize with all of you who have problems with it. My family refers to me as prednisone woman when I am on it because I can get so much done- cleaning, gardening, baking, no job seems to big! One trick I have resorted to is taking an antihistamine like Benydryl or Zyrtec both make me really sleepy, so when I have trouble sleeping that is what I do. My doctor said it is not a problem and the benefit I get from taking the prednisone is worth it at the moment. Dosages and taper procedures seem to vary widely, each of my doctors has a different preference and I am working with them to figure out what is best. My ENT likes to start me at 60mgs. which seems like a lot and I would be happier at 40mg He also only tapers me down to 20mg then I stop My other doctor likes me to taper out lower and slower. I like this better too. I know my ENT is trying to get the most bang in the shortest time- I am working hard on accepting the "trial and error" part of this disorder but am easily frustrated. This group helps me a lot. It is good to here what others are trying and to share frustrations that many people don't understand. Thanks to you all!~

Re: Complications of not having a sinus surgery

Jim,I am very fortunate not to have too many infections/headaches. The ethmoids and frontals are completely occluded and, yes, the surgeon said he could access the frontals using the endoscope/laser.I am extremely, extremely sensitive to both aspirin and prednisone. For aspirin, I noticed flushing and increased heartbeat after just handling a tablet that got a little wet (I was administering it to my dog). With prednisone, the last time I took it (post sinus surgery) I had horrible anxiety/paranoia after just a few days and had to discontinue. Thanks for your thoughts.Lynn> > > Hi Lynn,> > I sympathize with your dilemma. I too have relatively clear maxillaries, but> have essentially occluded frontals. However, I'm puzzled that you don't> mention constant infections. For me, the blocked frontals seem to be the> constant source of headaches and sinus infections - often every couple of> months.> > I also saw a surgeon last year and he recommended the total ablation (or> whatever it's called) of my frontals. If he had offered the computer-guided> endoscopic surgery, I might have considered it. Does your dr. say he can> reach into the frontals through your nose? That seems much less radical to> me.> I guess that I am in a "holding pattern" still considering surgery. It seems> to me that endoscopic surgery of the ethmoids and frontals would possibly> solve your anosmia. My previous two endoscopic surgeries were not> computer-guided and therefore left ethmoid and other "high-up" polyps which,> in my opinion, continued to cause anosmia right after surgery.> > Some people do try aspirin desens after surgery to keep the polyps from> growing back. Although I am currently desensitized, I should probably have> had surgery before undergoing desens. I share your concern about prednisone,> even though I probably take it three or four times a year. I also take> Fosamax, which has reversed my earlier bone loss.> > My only suggestion would be to consider surgery, then aspirin desense right> after it. Although the prednisone works miracles short term, I personally> think aspirin is safer and stands a good chance, if you're relatively> "polyp clean" when you start.> > As far as the mecca position, I think it really helps. However, in my> opinion, neither Nasocort nor Flonase reach high enough to help the> frontals.> > Good luck!> > Jim>

[Guest guest]

,

I know the feeling. When I get on prednisone I can get so much work done (like I used to before I got sick). After I stop my family avoids me for a few days until the "grumpiness" wears off. I also take some type of antihistamine when I am on prednisone. It helps me sleep and it also seems to lessen some of the side effects. I usually start out at 40mg (unless I am really bad, then 60mg) and I taper all the way to 10mg and sometimes do 10mg every other day for a few days. If I stopped at 20mg I would probably get kicked out of the house :-)

Rob

My family refers to me as prednisone woman when I am on it because I can get so much done- cleaning, gardening, baking, no job seems to big! One trick I have resorted to is taking an antihistamine like Benydryl or Zyrtec both make me really sleepy, so when I have trouble sleeping that is what I do. My doctor said it is not a problem and the benefit I get from taking the prednisone is worth it at the moment. Dosages and taper procedures seem to vary widely, each of my doctors has a different preference and I am working with them to figure out what is best. My ENT likes to start me at 60mgs. which seems like a lot and I would be happier at 40mg He also only tapers me down to 20mg then I stop My other doctor likes me to taper out lower and slower. I like this better too. I know my ENT is trying to get the most bang in the shortest time- I am working hard on accepting the "trial and error" part of this disorder but am easily frustrated. This group helps me a lot. It is good to here what others are trying and to share frustrations that many people don't understand. Thanks to you all!~

Re: Complications of not having a sinus surgery

Jim,I am very fortunate not to have too many infections/headaches. The ethmoids and frontals are completely occluded and, yes, the surgeon said he could access the frontals using the endoscope/laser.I am extremely, extremely sensitive to both aspirin and prednisone. For aspirin, I noticed flushing and increased heartbeat after just handling a tablet that got a little wet (I was administering it to my dog). With prednisone, the last time I took it (post sinus surgery) I had horrible anxiety/paranoia after just a few days and had to discontinue. Thanks for your thoughts.Lynn> > > Hi Lynn,> > I sympathize with your dilemma. I too have relatively clear maxillaries, but> have essentially occluded frontals. However, I'm puzzled that you don't> mention constant infections. For me, the blocked frontals seem to be the> constant source of headaches and sinus infections - often every couple of> months.> > I also saw a surgeon last year and he recommended the total ablation (or> whatever it's called) of my frontals. If he had offered the computer-guided> endoscopic surgery, I might have considered it. Does your dr. say he can> reach into the frontals through your nose? That seems much less radical to> me.> I guess that I am in a "holding pattern" still considering surgery. It seems> to me that endoscopic surgery of the ethmoids and frontals would possibly> solve your anosmia. My previous two endoscopic surgeries were not> computer-guided and therefore left ethmoid and other "high-up" polyps which,> in my opinion, continued to cause anosmia right after surgery.> > Some people do try aspirin desens after surgery to keep the polyps from> growing back. Although I am currently desensitized, I should probably have> had surgery before undergoing desens. I share your concern about prednisone,> even though I probably take it three or four times a year. I also take> Fosamax, which has reversed my earlier bone loss.> > My only suggestion would be to consider surgery, then aspirin desense right> after it. Although the prednisone works miracles short term, I personally> think aspirin is safer and stands a good chance, if you're relatively> "polyp clean" when you start.> > As far as the mecca position, I think it really helps. However, in my> opinion, neither Nasocort nor Flonase reach high enough to help the> frontals.> > Good luck!> > Jim>

[Guest guest]

I have the same problem. But I just solve

the anxiety by eating everything in the kitchen.

Jim

From: Rob Cumberledge

[mailto:rob@...]

Sent: Thursday, July 29, 2004 9:31

AM

samters

Subject: Re: Re:

Complications of not having a sinus surgery

,

I know the feeling. When I get on prednisone I can get

so much work done (like I used to before I got sick). After I stop my

family avoids me for a few days until the " grumpiness " wears

off. I also take some type of antihistamine when I am on

prednisone. It helps me sleep and it also seems to lessen some of the

side effects. I usually start out at 40mg (unless I am really bad, then

60mg) and I taper all the way to 10mg and sometimes do 10mg every other day for

a few days. If I stopped at 20mg I would probably get kicked out of the

house :-)

Rob

My family refers to me as prednisone woman when I am

on it because I can get so much done- cleaning, gardening, baking, no job seems

to big! One trick I have resorted to is taking an antihistamine like Benydryl

or Zyrtec both make me really sleepy, so when I have trouble sleeping that is

what I do. My doctor said it is not a problem and the benefit I get from

taking the prednisone is worth it at the moment. Dosages and taper procedures

seem to vary widely, each of my doctors has a different preference and I am

working with them to figure out what is best. My ENT likes to start me at

60mgs. which seems like a lot and I would be happier at 40mg He also only

tapers me down to 20mg then I stop My other doctor likes me to taper out

lower and slower. I like this better too. I know my ENT is trying to get the

most bang in the shortest time- I am working hard on accepting the " trial

and error " part of this disorder but am easily frustrated. This

group helps me a lot. It is good to here what others are trying and to share

frustrations that many people don't understand. Thanks to you all!~

Re:

Complications of not having a sinus surgery

Jim,

I am very fortunate not to have too many

infections/headaches. The ethmoids and frontals

are completely occluded and, yes, the surgeon said

he could access the frontals using the

endoscope/laser.

I am extremely, extremely sensitive to both

aspirin and prednisone. For aspirin, I noticed

flushing and increased heartbeat after just

handling a tablet that got a little wet (I was

administering it to my dog). With prednisone, the

last time I took it (post sinus surgery) I

had horrible anxiety/paranoia after just a few

days and had to discontinue.

Thanks for your thoughts.

Lynn

>

>

> Hi Lynn,

>

> I sympathize with your dilemma. I too have

relatively clear maxillaries, but

> have essentially occluded frontals. However,

I'm puzzled that you don't

> mention constant infections. For me, the

blocked frontals seem to be the

> constant source of headaches and sinus

infections - often every couple of

> months.

>

> I also saw a surgeon last year and he

recommended the total ablation (or

> whatever it's called) of my frontals. If he

had offered the computer-guided

> endoscopic surgery, I might have considered

it. Does your dr. say he can

> reach into the frontals through your nose?

That seems much less radical to

> me.

> I guess that I am in a " holding

pattern " still considering surgery. It seems

> to me that endoscopic surgery of the ethmoids

and frontals would possibly

> solve your anosmia. My previous two

endoscopic surgeries were not

> computer-guided and therefore left ethmoid

and other " high-up " polyps which,

> in my opinion, continued to cause anosmia

right after surgery.

>

> Some people do try aspirin desens after

surgery to keep the polyps from

> growing back. Although I am currently

desensitized, I should probably have

> had surgery before undergoing desens. I share

your concern about prednisone,

> even though I probably take it three or four

times a year. I also take

> Fosamax, which has reversed my earlier bone

loss.

>

> My only suggestion would be to consider

surgery, then aspirin desense right

> after it. Although the prednisone works

miracles short term, I personally

> think aspirin is safer and stands a good

chance, if you're relatively

> " polyp clean " when you start.

>

> As far as the mecca position, I think it

really helps. However, in my

> opinion, neither Nasocort nor Flonase reach

high enough to help the

> frontals.

>

> Good luck!

>

> Jim

>

[Guest guest]

Lori-

Thanks for sharing that. I want to make sure I understand the proper position -- basically your head should be upside down? Either hanging off the bed or in a sitting position w/ the top of your head down on the bed/floor? How long do you stay like that after spraying? Do you inhale while spraying? I'd LOVE to get my sense of smell back.

Thanks again, Stacey in MA

-------------- Original message -------------- Lori,I'm in Los Angeles. My ENT is Toffel, MD. He seems to be quite an expert, even a pioneer, in computer-assisted endoscopic laser surgery, knows about Samter's and Scripps, etc. So if anyone is in the LA area and wants to go the surgical route, I think he's about as state of the art as one can get, especially for a physician outside of an academic medical center. Also, he entertained all of my questions with a great deal of respect and did not push hard on surgery. I just haven't had much of a medical workup in quite a number of years, have very few symptoms other than anosmia, and am looking for a less drastic route and would love to avoid systemic steroids if humanly possible. Since reading the letter by McGinnis in American Family Physician about the proper posture for nasal steroid spray/drop administration, and following it for only two days, my sense of smell is returning after being absent for the last 6 years. If you haven't seen this on the web, please take a look. The "before" pictures look a lot like my most recent CTs. http://www.aafp.org/afp/971001ap/letters.html(I think this may also be in the archives.)It blows me away (sorry, no pun intended) that I've been puffing away on my rhinocort without results for so long. The prospect of surgery really made me do my homework!Lynn> Hi Lynn,> > I'm curious where you are and who your surgeon is. He sounds like my > surgeon. > > My surgeon prescribes the steroid bursts. I do not take them. > Instead I am religious about the sinus irrigation (I use ENT-SOL) and > I do use the steroid sprays (Nasonex in my case) but no oral steroids > unless I absolutely have to for the asthma.> > After my last surgery, my sinuses were inflamed for a while. I went > in to the ENT, he said, let's put you on a Medrol dose pack. He > prescribed it. I didn't take it. I went back to him in two weeks to > follow-up and he said, "Wow, that Medrol dose pack worked great! > Your sinuses are all clear." > > And the moral of the story is ... I think you can guess it.> > Besides, why wait to see if the steroids work before doing aspirin > desensitization? Aspirin desensitization is best done within a > couple of months after surgery BEFORE the polyps are bad. Not when > you've already tried something else that hasn't worked.> > I am curious about the reality of the polyps growing into the bone, > but I have heard it before, too. Curious what others' opinions are > about that in the group, or if anyone knows of any research or > literature on this.> > Good luck> > Lori