Medical Forum / Diseases and Disorders / Sinusitis / July 2004
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).
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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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