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Medical Forum / Diseases and Disorders / Sinusitis / July 2004

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a never-ending story of sinus polyps

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Tom - 17 Jul 2004 00:50 GMT
The longevity and severity with which I've suffered sinusitis depresses
me. Nothing has provided lasting relief. Polyps keep returning. I wonder
if they will ultimately result in complications leading to my end. This
may be unduly pessimistic, since I've never heard of a fatality
attributed to sinus polyps. But sinus treatment, for me, has almost
become a way of life. My most recent surgical episode was yesterday.

Over the last 16 years I've had major sinus surgery eight times and have
been treated by more than a half dozen ENT surgeons. I've been on
Prednisone, Aquatab, Cipro delivered by sinus nebulizer as well as oral
antibiotics, lavages with amphotericin-b, Alkalol, and saline, and a
variety of steroid sprays. After surgery yesterday the doctor said he had
allocated for me in the O.R. and ended up spending over three hours with
me under general anesthesia. He ended up putting a stop to the operation
without removing all of the polyps, stating that he was very surprised at
the quantity of diseased tissue that he found and with the instruments at
his disposal he was unable to reach all the affected areas. We will meet
this Monday to discuss his proposal for yet another operation in which he
will apparently seek more aggressively the removal of the remaining
polyps. I have not yet had a chance to talk with him about this at all; I
only know this is what he said to my wife when I came out of the O.R.

A history of the procedures I've had in struggling with this curse
is pasted below. I'm not sure what I'm hoping to get in response from
this group. I've read the postings here over time and have found many of
them supportive and informative. At this point, with my mood perhaps
depressed further by the effects of post-operative hydrocodone, I can't
see any light at the end of the tunnel.

A medical dictionary defines a "polyp" as, "A smooth dome-shaped benign
neoplasm of covering and lining epithelium," and "neoplasm" as "A mass
of tissue that is actively and progressively growing because of
permanent defects its cells' growth-controlling mechanisms."
(http://www.usc.edu/hsc/dental/opath/Chapters/DictionaryP.html).

Is there any record of purportedly benign sinus polyps turning malignant?
It's been my understand that the worst case scenario, if left untreated,
is that my sinus airways could become entirely blocked by polyps. It was
nearly that bad for me in 1987 prior to my first surgery. I have also had
asthma all my life, which I do not doubt is related in some way to
condition of my sinuses. (No allergy to asperin or other medications that
I'm aware of though.)

Is there anyone in this group who's had polyps that have been so non-
responsive to any form of treatment? What hope is there to resolve this
condition, short of a lifetime series of surgeries? I'm now 45 years
old. At this rate, should I anticipate another eight to twelve sinus
surgeries in my lifetime? God help.

Is there a genetic therapy available - even experimentally - resulting
from research on the human genome perhaps, with respect to the
development of chronic polyps or benign tumors of this sort? Are there
any clinical trials underway for new treatments for sinus polyps? I'm
grasping at straws.

Whoever it was here that wrote the FAQ for this group, it's thorough and
to the point. Sinusitis sucks.

Any advice or words of informed counsel would be appreciated. I'm not
feeling very hopeful.

*  *  *


-= SURGICAL HISTORY =-

07-15-2004 - Endoscopic polypectomy, frontal sinus exploration, anterior
ethmoidectomy, maxillary antrostomy with tissue removal, and septoplasty
at St. Luke's Hospital, Newburgh, N.Y. by R. DeMaio, M.D. This procedure
(which took place yesterday) follows three years of lavage treatments
variously using amphotericin-b, Alkalol, and saline, under close medical
supervision, with medication on Aquatab for congestion, as well as Cipro
delivered by sinus nebulizer and periodic courses of Prednisone.

01-13-2001 - Image-guided bilateral endoscopic nasal polypectomy with
bilateral maxillary enterostomies, total ethmoidectomies and
sphenoidotomies at St. Luke's Hospital, Newburgh, N.Y. by R. DeMaio,
M.D. Pre-operative note gave this summary: "The patient is a 42-year-old
male with a long history of nasal sinusitis and polyps. The patient has
undergone Sinus surgery in 1988, '89 and '94. The patient has had
recurrent polyposis since this time. He has been treated by me for
reduction of the polyps for several months. He has had some success with
amphotericin b. lavaging of the sinuses. However the massive polyposis
should be debrided for improvement in his nasal airway. The patient is
now being admitted for endoscopic sinus surgery with image-guided
computerized system for bilateral maxillary antrostomies, total
ethmoidectomies and sphenotomies."

11-28-1994 - Septoplasty, bilateral Lynch frontal sinusotomy, bilateral
total intranasal ethmoidectomy, bilateral sphenoid sinusotomy with
polypectomy, bilateral maxillary sinusotomy with removal of polyps, left
nasal sinus endoscopy with osteomeatal complex resection and antrostomy,
with excision of nasal polyps bilaterally at Horton Memorial Hospital,
Middletown, N.Y. by Edward Fisher, M.D. Operative note: "The sinus was
filled with polyps. They were removed sequentially using the bean
forceps and sucker. An intrasinus septum between the medial and lateral
right frontal sinus was drilled to create one larger space. The area of
the frontal sinus down toward the frontal recess was cleared of polyps.
An incision was then made on the left for the left Lynch procedure. * *
* The septum was replaced back to the midline, by creating an incision
on the right side at the beginning of the bony septum. Previous surgery
had resected it posteriorly and inferiorly. The right mucosal flap was
elevated from the bony septum. The bony septum was then removed and was
then fractured back to the midline. When this was completed, the septum
was midline, which facilitated the anterior ethmoidectomies and frontal
recess approach. When the surgery was completed, the nasal cavities were
packed with Vaseline gauze and the patient was returned to the Recovery
Room in satisfactory condition."

11-13-1992 - Referred for a consult with a well-known ENT doctor a major
teaching hospital in New York City. Dr. Liu's referral letter reported:
"This is a gentleman who is status three post sinus surgeries, the last
of which was performed by me. Despite performance of the frontal recess
area and in the ethmoid dome, the patient has again recurrence of polyps
and has severe headache in this region. Steroids, antibiotic, and
mucolytic agents have been done with unsatisfactory control of this
problem." For financial reasons this referral was not pursued beyond one
office visit. Outpatient treatment with Dr. Liu continued for another
year, with little long-term change.

09-01-1992 - Endoscopic sinus surgery with removal of polyps at Wayne
Memorial Hospital, Honesdale, Penna. by P. Liu, M.D. Upon discharge: "He
is about four months post endoscopic sinus surgery. The patient did well
initially. He had exposure to an environmental allergen with significant
flaring up and polypoid reaction. Since then the patient has had
recalcitrant polypoid sinusitis despite steroid injections, antibiotics,
and decongestants. He has opacification of the sinuses on the CT scan.
Because of failure of treatment, the procedure of polyp removal and re-
establishment of aeration of the sinuses through endoscopic sinus
surgery * * * Polyps within the ethmoid frontal recess was opened up.
Dissection was carried up to the frontal recess region. The natural
osteum of the maxillary sinus was opened up. Posterior dissection was
carried close to the posterior ethmoid air cell and down to the area of
the sphenoid area, and packing was placed in the area. There was about
500 cc. loss of blood. The patient was thoroughly suctioned out. He
tolerated the procedure well and was in stable condition throughout the
procedure."

03-13-1992 - Endoscopic sinus surgery in the office of P. Liu, M.D. with
local sedation. Post-op note: "Since the last surgery he has failed to
significantly improve and has complaints of severe headache, pressure,
and nasal obstruction. CT scan shows sphenoid opacification on the right
side, collection of opacification on selected ethmoid areas. He was
treated conservatively for a while, and despite this has continued to
have problems. The patient had a WBC of 17,000 off antibiotics. He was
placed on antibiotics and his WBC came down to 14,000. In view of
persistent infection and failure of medical therapy, the procedure of
revision endoscopic sinus surgery with septoplasty were discussed***  

05-01-1991 - Endoscopic sinus surgery with removal of polyps Wayne
Memorial Hospital, Honesdale, Penna. by P. Liu, M.D.

12-15-1989 - Bilateral intranasal spheno-ethmoidectomies, bilateral
Caldwell-Luc, and bilateral excision of middle turbinates at Westchester
Medical Center, Valhalla, N.Y. by A. Moscatello, M.D. Upon discharge:
"At the time of surgery the patient was found to have polyps occupying
the entire maxillary sinuses bilaterally and the ethmoid sinuses
bilaterally. The ethmoid and maxillary sinuses were extenterated
completely."

03-08-1988 - Bilateral nasal polypectomy, bilateral sphenoidectomy, and
bilateral Caldwell-Luc at Mercy Community Hospital, Port Jervis, N.Y. by
J. Navare, M.D. Post-op note: "This is a 30 year old who was admitted
with bilateral nasal polyps and total obstruction of the nasal airway.
Was found to have involvement of the bilateral ethmoid and maxillary
sinuses... Was found to have polyps in all ethmoid and maxillary
sinuses."

02-22-1988 - Initial physician office visit for sinus complaints with K.
Karsai, M.D. of Monticello who diagnosed "multiple nasal polyposis" and
referred treatment to Y. Newland-Pagan, M.D. of Liberty; who in turn
referred surgery to Dr. Navare and subsequently to Dr. Moscatello
(above).

---

 
Pyschotron - 17 Jul 2004 04:12 GMT
> The longevity and severity with which I've suffered sinusitis depresses
> me. Nothing has provided lasting relief. Polyps keep returning. I wonder
> if they will ultimately result in complications leading to my end. This
> may be unduly pessimistic, since I've never heard of a fatality
> attributed to sinus polyps. But sinus treatment, for me, has almost
> become a way of life. My most recent surgical episode was yesterday.
<snip>

Have you ever been tested for mycoplasma?  It's not generally
accepted as a cause yet no one knows the cause.

Here's a somewhat dated document that suggests a possible link.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=264771

Here's a place that does testing.

http://www.immed.org/index.htm

There was a study done after this one that discounts mycoplasma
however it did not _prove_ it isn't implicated.

Your story sound almost identical to mine.   I have been on all
the treatments you describe.  Most recently the ampho.  The absolute
best success I have had is with sinus buster.  I can smell for the
first time in years without the use of steroids.  I have to schedule
an appointment to see if the polyps are shrinking.  I assume they are.
ENTconsult - 17 Jul 2004 05:09 GMT
Have you had an allergy workup? Are you avoiding salicylates?
Murray Grossan, M.D.
http://www.ent-consult.com
Tom - 18 Jul 2004 02:40 GMT
> Have you had an allergy workup? Are you avoiding salicylates?
> Murray Grossan, M.D.
> http://www.ent-consult.com

Thanks to you and Psychotron for the replies. Years ago I had an allergy
workup and was found to be allergic to cat dander, which I have since
fairly well outgrown. However, I think your suggestion is a good one and I
will see about finding an allergist in my area. Are there specific tests
that you would recommend, or may I expect the allergist to know what to
test for?

Regarding avoiding salicylates, this is not something that any of the
doctors who have ever treated me have mentioned, except prior to surgery as
a precaution agains excessive bleeding. Can you say more on this subject or
point me to some literature?

Thanks again.

Tom
Don Brady - 18 Jul 2004 05:18 GMT
>Regarding avoiding salicylates, this is not something that any of the
>doctors who have ever treated me have mentioned, except prior to surgery as
>a precaution agains excessive bleeding. Can you say more on this subject or
>point me to some literature?

Have you ever considered doing a Google search, say on
salicylates polyps

The connection is extremely well-known.
Tom Rue - 19 Jul 2004 04:33 GMT
> Have you ever considered doing a Google search, say on
> salicylates polyps
>
> The connection is extremely well-known.


What a novel idea; I'll have to look into that google thing.

It may be well-known to you, but as I said it's never been mentioned to me
over the course of 16 years by a half dozen different ENT surgeons and more
than that number of major surgeries.

I'll see my doctor tomorrow and will ask his thoughts on salicylatates and
why he never brought it up, and I'll look for the book that was
recommended. Thanks to those who gave helpful replies.
Don Brady - 19 Jul 2004 04:59 GMT
>It may be well-known to you, but as I said it's never been mentioned to me
>over the course of 16 years by a half dozen different ENT surgeons and more
>than that number of major surgeries.

It has been mentioned to me by doctors and I don't even have polyps so I have
to wonder as to the quality of care you have been getting.....
ARoberts - 18 Jul 2004 05:26 GMT
> > Have you had an allergy workup? Are you avoiding salicylates?
> > Murray Grossan, M.D.
[quoted text clipped - 15 lines]
>
> Tom

Here is an informative link on the subject:

http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202515.html
ENTconsult - 18 Jul 2004 20:16 GMT
thank you for that list. That really is worthwhile information.
In case you missed it, the list of salicylate products is at
http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202515.html
Murray Grossan, M.D.
http://www.ent-consult.com
ENTconsult - 18 Jul 2004 20:01 GMT
Dear Tom,
There are a dozen articles re salicylate sensitivity as a cause of polyp
regrowth.
In your situatin this is critical.
Re the allergy tests, ask to test for fungus and mold sensitivity too.
I believe my new book, How to be free of sinus disease permanently will be of
help to you. It should be on www.hydromedonline.com in a week or so in E book
form.
Murray Grossan, M.D.
http://www.ent-consult.com
Johnny1000@webtv.net - 18 Jul 2004 20:45 GMT
What exactly is a "polyp"? ...Is it like a boil? Are the sinus ones the
same type that some individuals get in their colon?  Can they occur in
other places? ...Jon
Tom Rue - 19 Jul 2004 06:16 GMT
> Dear Tom,
> There are a dozen articles re salicylate sensitivity as a cause of
> polyp regrowth.

As I said, I'll watch for your e-book. In the meantime, one question that I
have is how salicylate fits or interacts with fungus in the etiology of
sinus disease. The latter has been suggested by my doctor as likely causal;
hence the ampho. It seems this is a field that is rapidly developing. I'd
be surprised if there is presently a wide consensus among informed ENT
doctors as to the precise cause of chronic polyp recurrence, at least as
yet. I'm certainly willing to look at anything, with gratitude for whatever
works.

A google search for <+salicylate +"sinus polyps"> yields a total of six
hits (http://tinyurl.com/4cs3h). A similar search of JAMA journals gives
none. Madscape comes back with one hit (http://tinyurl.com/59xwz), but that
article doesn't actually seem to mention salicylate (at least not that I
could find in a word search of each of the pages). Similarly, a query of
the medical journal database at Lexis-Nexis on the terms <salicylate AND
sinus AND polyps> came back empty. In light of those six hits in google, I
don't doubt that there are a number credible articles out there mentioning
salicylate as a suspect cause of polyp regrowth. Scirus gives a large
enough result on the combined terms that when I limited the search to just
the 12 months, it still came back with 17 hits (http://tinyurl.com/5y5f6),
the first of which seems to have run in The Lancet in 1995 (though it's
worth mentioning that many of the articles indexed in Scirus are not peer-
reviewed.) Interestingly, a quick reivew indicates several of these hits
that came up there appear to have been written by osteopaths.

I'll keep looking at this and will talk with my own doctor tomorrow.

Thanks.

Tom

> will be of help to you. It should be on www.hydromedonline.com in a
> week or so in E book form.
> Murray Grossan, M.D.
> http://www.ent-consult.com
Don Brady - 19 Jul 2004 07:07 GMT
>As I said, I'll watch for your e-book. In the meantime, one question that I
>have is how salicylate fits or interacts with fungus in the etiology of
>sinus disease.

Fungus is rare.

One can search on Aspirin Triad for lots of articles on Samter's Triad
(Aspirin,  Polyps, and Asthma)

Here's one among many:

http://www.allergycapital.com.au/Pages/Samters.html
knob - 19 Jul 2004 13:07 GMT
>>Dear Tom,
>>There are a dozen articles re salicylate sensitivity as a cause of
[quoted text clipped - 11 lines]
> A google search for <+salicylate +"sinus polyps"> yields a total of six
> hits (http://tinyurl.com/4cs3h). A similar search of JAMA journals gives
<snip>

+salicylate +"nasal polyps" will yield much better results.
Tom Rue - 21 Jul 2004 01:12 GMT
knob <hey@dontemailme.com> wrote in news:GPOKc.5359$ab.510
@fe39.usenetserver.com:

> +salicylate +"nasal polyps"

Yes, I see what you mean.
ARoberts - 19 Jul 2004 13:16 GMT
> > Dear Tom,
> > There are a dozen articles re salicylate sensitivity as a cause of
[quoted text clipped - 8 lines]
> yet. I'm certainly willing to look at anything, with gratitude for whatever
> works.

Here is a link to the Mayo Clinic website that refers to fungal sinusitis:

http://www.mayoclinic.org/sinusitis-rst/fungi.html
Tom Rue - 21 Jul 2004 01:15 GMT
"ARoberts" <a-roberts1@comcast.net> wrote in news:sYOKc.131139$Oq2.109781
@attbi_s52:

> http://www.mayoclinic.org/sinusitis-rst/fungi.html

The article referenced at the start of the web page was mentioned to me by
my doc two years ago when I first started on amphotericin, and I downloaded
and read it shortly thereafter. At the time I was hopeful that amphotericin
would bring great improvement. It may have helped somewhat. I can't say.
ARoberts - 21 Jul 2004 04:09 GMT
> "ARoberts" <a-roberts1@comcast.net> wrote in news:sYOKc.131139$Oq2.109781
> @attbi_s52:
[quoted text clipped - 5 lines]
> and read it shortly thereafter. At the time I was hopeful that amphotericin
> would bring great improvement. It may have helped somewhat. I can't say.

I had amphotericin prescribed for me about 2 years ago.  It was administered
by a then-new nebulizer, the Sinu-Neb, and in a preparation that was
specially formulated for  nebulizing (by SinusPharmacy).  The results were
pretty dramatic at the time:  I regained my sense of smell, and apparently
had little systemic uptake since the med was topically applied (as with your
circumstance, using lavage).  Later, during a recurrence of sinusitus, the
ampho was tried again without success, but antibiotics worked well.  It
seems that there are different pathogens at different times, and it comes
down to an event-by-event response to them.  There appears to be a
scatter-shot approach to all this by the medical community.  I seldom have
had cultures taken (and I know that it can be tricky to get accurate
cultures in the sinuses), but it would seem that it could be approached more
methodically than it is, without the presumption of some "universal
pathogen" for all cases.
Tom Rue - 21 Jul 2004 05:08 GMT
***
> I had amphotericin prescribed for me about 2 years ago.  It was
> administered by a then-new nebulizer, the Sinu-Neb, and in a
> preparation that was specially formulated for  nebulizing (by
> SinusPharmacy).  The results were pretty dramatic at the time:  I
***

I've used the same device. For me, the greatest effect was moisture, which
I could have gotten (and at other times did get) by putting saline in the
Sinuneb cup and breathing that for a while.


ENTconsult - 19 Jul 2004 18:21 GMT
Please tell us how you are using the Amphotericin B.
what dose? What do you put it in? What are the directions.?
Murray Grossan, M.D.
http://www.ent-consult.com
Tom Rue - 21 Jul 2004 01:10 GMT
> Please tell us how you are using the Amphotericin B.
> what dose? What do you put it in? What are the directions.?

It was prescribed at 100 mcg./ml., #200 ml. bottle. The pharmacist told
me that he mixed saline with amphotericin that he obtained regularly for
me by special order. I had to seek out a different pharmacist than usual
because the one that I ordinarily use said he does not like to draw up
custom mixtures. The pharmacist at the local supermarket, however, didn't
mind and commented that his competitor didn't seem to want to practice
pharmacology - limiting himself to selling commercially packaged goods.

My ENT has since taken me off of the ampho after about two years of
regular use (2001-2003). While using it, I administered the solution by
lavage in the same manner that I have used Alkalol at times (i.e. with an
aspirator up the nose, over the sink), BID. He subsequently prescribed a
couple of different commercially-made meds, one of which was
amphotericin-b 10 mg. mixed with 10 mg. INH; and at a different time
betamethazine, each as a vaporized solution via a sinus nebulizer
patented by sinuspharmacy.com, which I continued intermittently as
instructed for about a year, up until a couple months ago when I reverted
to Alkalol, steroid sprays, and Aquatab.

I believe that I have seen the opinion given in this ng in the past
(months ago; I don't recall by whom) that amphotericin once begun must be
continued for life. My ENT seems did not agree with this philosophy, in
part perhaps because I was still developing polyps and he wanted to try a
different approach. I suspect he may put me back on it at some point.

When I met with him yesterday, I asked my doctor about the salicylate
question discussed in this thread a couple days ago. He agreed it's worth
exploring as salicylate allergy is a known cause of polyps in some
people. However, he stressed his belief that this shouldn't be assumed in
every case, and I should be tested for it as well as other sensitivities.
He referred me to a physician whom he said is double-board-certified (by
which I believe he meant certified in ENT and allergies). I have an
appointment in about two weeks. If you have any specific suggestions of
substances that I should ask the allergist to test me for, I'd welcome
that. I have no doubt she knows what she's doing, but I won't mind
passing along deas. I'm open to considering anything that might lead to a
cure. I have more confidence in my present ENT than in prior surgeons who
have operated on me precisely because he practices medicine, not meat-
cutting, if you know what I mean. He does not push surgery as some have
that I've seen in the past.

However, we tentatively scheduled another operation for early October
(which I believe will be my eighth major surgery in lifetime, since
1987), at which point he intends to straighten my septum, which is
contributing to blockage, and finish cleaning out scarring and infected
tissue. He said he got about 75% of what he wanted to in surgery last
week and stopped because of heavy bleeding. He was quite graphic in his
description of the extensive encrustation of an infected ethmoid area,
and said that all of my sinus cavities were packed solid, which severely
limited air flow. Today I'm breathing more freely than I did before
surgery and am starting f My feeling, from the long-standing chronicity
of this is that it must be an allergic reaction to something, which may
well be salicylates. Until allergy testing proves otherwise, I'll make a
conscious effort to avoid aspirin and other meds with salicylates.

Thanks for your supportive and helpful suggestions.

__
http://tomrue.hopto.org


 
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