Medical Forum / Diseases and Disorders / Sinusitis / March 2007
Free of sinus infection for the first time in years
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Susan - 16 Mar 2007 01:08 GMT The simple fact that I can breathe after having stopped Augmentin XR days ago, and irrigate without anything but clear water coming out is a gift at this point. Even some allergic congestion isn't gumming up the works in my right ethmoid. No more blood, technicolor goo, etc.
For me, the fix was in discontinuing, then reducing by more than half, the immunosuppressive meds I was using, topically and intranasally. I still use Astelin spray. I still irrigate out of habit (and because the return of my immune function made me test allergic to everything I'd been desensitized to) and because I don't quite believe how successful restoring my immune function has been. Rather, I didn't realize how powerfully immunosuppressant my topical med was.
Treat the person and the environment, not just the nose, I say.
Susan
neil0502@yahoo.com - 16 Mar 2007 03:37 GMT > x-no-archive: yes > [quoted text clipped - 12 lines] > > Treat the person and the environment, not just the nose, I say. Susan-
I'm thrilled for any relief you've found ... by whatever means you've found it.
After adding three days of zithromax to my amoxi and doxy, I'm not getting much better. This one's gone on for about 6wks. The technicolor extravaganza's in full bloom. The works. Maybe it's fungal. Maybe it's viral. Maybe they simply ARE incredibly hardy bugs (bacterial insurgency?) that aren't giving up the ghost readily.
I've made an app't to start from scratch with the ENT. I've always tested neg for any allergy except a +2 for penicillium (no change after desensitization therapy). National Jewish, in Denver, says I'm healthy as a horse.
I just don't get it ... but ... it's rather dismaying ... as you all know too well.
One question for you: I'm really hesitant to use Astelin (or most of the sprays, for that matter) because of the BAK used as a preservative. As I've mentioned here, six years of daily BAK- preserved eye drops used absolutely killed my eyes. It seems to have set the course of my sinuses back about two millenia, too.
Not of particular concern to you, or ... the cost-benefit equation still looks favorable...?
Steven L. - 16 Mar 2007 04:21 GMT >> x-no-archive: yes >> [quoted text clipped - 23 lines] > fungal. Maybe it's viral. Maybe they simply ARE incredibly hardy > bugs (bacterial insurgency?) that aren't giving up the ghost readily. Have you had a bone scan? Perhaps the infection has already invaded the bone of your skull.
What does your latest CT scan show?
The streaming FESS video that somebody else pointed a link to, was very interesting because it showed a sinus procedure and during it, the surgeon discovered two inverted papillomas in the patient's sinuses that the CT scan had missed. He made a comment that "surgical correction and detection are intertwined," which is a polite way of saying that sometimes you can't make a correct diagnosis without doing the surgery anyway and going into the sinuses and looking with your own eyes.
That was my situation too. From such experiences (and many others), I've come to the conclusion that surgery should be performed not just when a CT scan shows definite evidence of sinus disease, but even when a CT scan is ambiguous or borderline. Only if the CT scan shows you are absolutely, positively, 100% free of any trace of sinus disease should surgery be avoided.
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neil0502@yahoo.com - 16 Mar 2007 05:32 GMT > Have you had a bone scan? Perhaps the infection has already invaded the > bone of your skull. Bone scan? Nope. Something to talk with Terence Davidson about. Thanks. Would a positive finding typically drive a /different/ course of treatment?
> What does your latest CT scan show? That would have been the pre-FESS CT from 12/04. Allegedly, there were quite a few polyps, thickening, etc., but all cleared up in the FESS, I'm told.
I DO understand that polyposis is highly likely to recur, though I don't know at what rate they grow. Yeah. Imaging.
> The streaming FESS video that somebody else pointed a link to, was very > interesting because it showed a sinus procedure and during it, the [quoted text clipped - 3 lines] > sometimes you can't make a correct diagnosis without doing the surgery > anyway and going into the sinuses and looking with your own eyes. Makes sense. Having had four sinus surgeries, I'm certainly not apprehensive about them. I'm just always trying to manage that nagging risk-reward equation ... and without much real information to evaluate it. Plus, now, having read a bit about "Empty Nose Syndrome...." ??
Imaging. Sounding better all the time. I'll watch the vid. I've got that kind of time on my hands ;-)
ISTR some former-Mayo doc cited around here. You send him your images and $250 (or something) and he gives you the best Dx and recommendations in the business. Is this an apocryphal story, or does such a doc exist [I'll try to search the forum]?
> That was my situation too. From such experiences (and many others), > I've come to the conclusion that surgery should be performed not just > when a CT scan shows definite evidence of sinus disease, but even when a > CT scan is ambiguous or borderline. Only if the CT scan shows you are > absolutely, positively, 100% free of any trace of sinus disease should > surgery be avoided. I think your point's very well taken. "Exploratory surgery" is a pretty well-established concept in other realms. I was told--based on the polyposis--that I should make some peace with the notion of "clean out surgery" as a nearly-annual maintenance procedure.
Seems like there's significant progress in things like radio, somnoplasty, septoplasty, etc., since my last, anyway--some of which seem to have a fighting chance at things like biofilms.
The mini-tragedy is ... I've been wanting to move to northern Colorado for years. The hopes seemed all but gone after the BAK did its deed on my eyes. Now--with these $13k "scleral lenses--" there was some cause for hope. But with the deteriorating sinuses ... Colorado's cold, dry, high-altitude seems awfully far away.
Thanks, Steven.
truehawk - 16 Mar 2007 08:47 GMT during it, the
> > surgeon discovered two inverted papillomas in the patient's sinuses that the CT scan had missed. Artical gives a whole workup on sinonasal papillomas.
http://www.emedicine.com/ent/topic529.htm
Imaging Studies:
"Preoperative radiographic assessment of SPs plays an important role in determining extension of the disease and involvement of adjacent structures; hence, choosing the appropriate approach is important. Coronal and axial contrast-enhanced CT is considered the study of choice for assessing intranasal lesions. As many as 75% with SPs have evidence of various degrees of bone destruction. These may include thinning, remodeling, erosion, and (less commonly) sclerotic bony changes. The presence of bone destruction alone does not indicate dedifferentiation into malignancy from the SP. CT is more precise than conventional radiography for identifying the areas of bony erosion. With CT, differentiating a papillomatous lesion from inspissated mucous, mucoperiosteal thickening, or polyps resulting from obstruction of a sinus drainage pathway is sometimes difficult. MRI is an alternative study that is superior to CT in distinguishing papillomas from inflammation and for providing better delineation of the lesions in contrast to surrounding soft tissue. SPs have a heterogeneous appearance on MRI. On T1-weighted images, sinonasal papillomas appear slightly hyperintense to muscle; however, on T2-weighted images, SPs have intermediate signal intensity. A convoluted cerebriform pattern on T2 and enhanced T1-weighted MRIs for Inverting papilloma may be potentially distinctive in 80% of cases according to O"
Steven L. - 17 Mar 2007 23:36 GMT >> Have you had a bone scan? Perhaps the infection has already invaded the >> bone of your skull. > > Bone scan? Nope. Something to talk with Terence Davidson about. > Thanks. Would a positive finding typically drive a /different/ course > of treatment? If the bone scan shows that infection has gotten into the bone of your skull (osteomyelitis), then intravenous antibiotics will be needed since oral antibiotics don't get enough of it into the bones.
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neil0502@yahoo.com - 18 Mar 2007 16:47 GMT > neil0...@yahoo.com wrote: > >> Have you had a bone scan? Perhaps the infection has already invaded the [quoted text clipped - 7 lines] > skull (osteomyelitis), then intravenous antibiotics will be needed since > oral antibiotics don't get enough of it into the bones. Thank you, Steven.
The idea that--primarily if chronic--osteomyelitis can leave you alone for years on end, then pay a highly regrettable visit--is particularly interesting. I refer to my situation as causing a "complex of symptoms." When it hits, it all hits.
A National Jewish dermatologist told me, "I don't care what the immunologic workups find, quantitatively, you DO have immunologic issues. You're having dramatic and abnormal reactions to commensal bugs like S.aureus, strep, etc."
Seems these guys ... and fungi ... are the likely culprits in osteomyelitis, too. My body doesn't seem to have the bandwidth.
Can't recall if I mentioned, but ... in February ... something new "made my list:" I finally resorted to Afrin 12hr, limiting it to 3 days of use. A short time (minutes) after use ... as the congestion was beginning to clear ... I felt a strong pain in my upper left molars/mandible--something I'd never felt before. I was expecting a tooth to shoot out of the rack. The pain lasted a few minutes then resolved.
Sure sounds like a "could be bone" thing to me. You agree?
eMedicine.com says that empiric therapy is indicated--including going straight to IV antimicrobials. I'm not opposed to this. I'll mention it, in addition to talking about imaging studies.
Incidentally, tried 10mg of loratadine (gen for Claritin) 24hr yesterday and Friday, thinking that it'd be a rather easy way to see if there's an allergic component. Some minor relief of symptoms, but nothing earth-shattering.
Thanks again..
truehawk - 18 Mar 2007 19:29 GMT > A National Jewish dermatologist told me, "I don't care what the > immunologic workups find, quantitatively, you DO have immunologic > issues. You're having dramatic and abnormal reactions to commensal > bugs like S.aureus, strep, etc." When the he-doublehockysticks were THOSE bugs EVER commensal?
A. aureus is one of the most frequently recovered pathogens in chronic sinusitis. I wish they would develop a vaccine.
Also think about the inverted papilloma, those are nasal warts!!! One day you don't have them, the next day you do. No cilia on that sucker, it will allow anything to attach to the top. The Germans found them in 8/43 surgeries on people with unilaterial opacification. If I can remember this week I am going over and get vaccinated hoping I can be one less with inverted papillomas.
The nose and sinuses are the filter on the vacuum cleaner. Everything that can ride on dust .........
Susan - 16 Mar 2007 13:46 GMT > One question for you: I'm really hesitant to use Astelin (or most of > the sprays, for that matter) because of the BAK used as a [quoted text clipped - 4 lines] > Not of particular concern to you, or ... the cost-benefit equation > still looks favorable...? That's something I'll give more thought to as my allergy shots desensitize me once more, they're very aggressive in dose.
All my allergies are back to where they were two years ago, as my immunity is no longer suppressed.
I still have symptoms of AFS, btw, just not blossoming into infection at this time.
Susan
Steven L. - 16 Mar 2007 04:15 GMT > Treat the person and the environment, not just the nose, I say. > > Susan Oh, I concur. Unfortunately, in many cases, it's often not that easy!
Depending on particular circumstances, "treating the environment" may require relocation, which means a new home and maybe even a new job or even a new career. Or it may require expensive mold remediation in your existing home or business. Or it may require quitting smoking, which is not easy either.
On this NG, over the years, we've had folks with all those problems.
There's also a psychosomatic connection too. We've had folks on this NG who developed chronic sinusitis (sometimes with other health problems) as a concomitant to the grief reaction from suffering a major loss--divorce, death of a loved one, etc. Fixing that can require psychotherapy.
You're one of the lucky ones. A simple change in medication regimen has apparently resulted in significant improvement. But for someone who is a chain smoker, I don't know what to tell them except to consider quitting and wish them good luck.
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Sharon - 19 Mar 2007 17:19 GMT > x-no-archive: yes > [quoted text clipped - 5 lines] > restoring my immune function has been. Rather, I didn't realize how > powerfully immunosuppressant my topical med was. I have reumatoid arthritis and my doc wants to put me on a new immunosuppresant medication for it called Enbrel. It sounds like it will be good stuff for my joints, but the immunosuppressant properties do worry me a bit. It's well-known and documented that it causes sinusitis and makes any infection you might already have worse. I haven't started it yet because I was diagnosed with sinusitis just before it was prescribed, so I'm working on getting that treated first. But she wants me to start it as soon as my ENT declares me healed after my FESS and infection-free. I'm wondering how long it will take after that for the Enbrel to give me another infection. Based on conversations with other people using Enbrel, it seems to be quite a rollercoaster ride.
-- Sharon "Gravity... is a harsh mistress!"
Susan - 19 Mar 2007 22:11 GMT > I have reumatoid arthritis and my doc wants to put me on a new > immunosuppresant medication for it called Enbrel. It sounds like it will be [quoted text clipped - 7 lines] > conversations with other people using Enbrel, it seems to be quite a > rollercoaster ride. It was ruled out for me due to chronic infection after consultation with a derm who specializes in dermatoimmunology. I have chronic tick borne diseases with CNS symptoms, and Enbrel can also cause MS like neurological problems.
After many years of damaging immunosuppressive treatments, I have to say I won't touch immunosuppressants on a dare at this point.
Is it possible that you have one of the many cases of rheumatoid arthritis that will respond to antibiotics (quite a few cases of different arthritic conditions, including rheumatoid do). Is it possible that you, like me, have steroid resistance syndrome and don't use your own body's cortisol well? Could you have a latent infection of some sort?
I understand the situation you're in, but no doc has the right to insist on a treatment for you unless and until you're comfortable that other, less damaging options have been ruled out.
Susan
Boron Elgar - 20 Mar 2007 16:00 GMT >> x-no-archive: yes >> [quoted text clipped - 20 lines] >-- Sharon >"Gravity... is a harsh mistress!" I have RA and am a T2 diabetic (HbA1c of 5.2, so that is tightly controlled).
My sinus infections started when I went on Humira (a DMARD similar to Enbrel). I had never had one before then.
Between consultations with the rheumie, the ENT and my GP, we try to balance it out...if I get a sinus infection, I back off the Humira until it is under control and I am asymtomatic and off antibiotics.
It isn't fun and it is a fine line I try not to cross...- being able to walk comfortably and hold a coffee cup and being sinus infection-free (and it often goes into my chest, too.)
I am fortunate in the Humira works quickly in relieving the RA and I now use it almost symptomatically, injecting as infrequently as possible.
Boron
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