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Medical Forum / Diseases and Disorders / Sinusitis / October 2009Doctor says I'm better, but I'm not. Possible bone infection?
Summary For about five years I had an undiagnosed sinus infection with the following symptoms: Continuous feeling of pressure/fullness in rear maxillary area accompanied by very prominent fatigue and malaise. Two surgeries later nothing has changed. I am going to try for a bone scan, what are my other options? Details The way we orignally diagnosed the problem was by CT scan. It showed mild sinusitis. This was further justified (retroactively) by the first surgeon saying that I needed the surgery. Things did not improve, so I went to a second surgeon. He said that my maxillary sinuses were scarred at the opening and that the first surgeon had not even worked on my ethmoids. So I got surgery again. Afterwards he said that the surgery was justified, but that it was pretty mild compared to other cases he had seen. Both this and the degree of fatigue I am still experiencing lead me to believe that closed off sinuses are not the root of my problem. I have never had any of the common symptoms like stuffiness or discharge. Fatigue and the pressure feeling are really the only ones. Antibiotics do help but stop working abruptly after a few days. The same goes for oral and nasal steroids. They alleviate the symptoms to the point where I think I'm going to get better, then quickly stop working. Since the second surgery I sometimes get a weird smell, especially during the first rinse of the day. I had believed it was blood but was wrong since the blood is all gone and I am still getting the smell. It's not particularly strong, but reminiscent of something that's gone bad. Another thing that points to infection is a feverish feeling I get for several hours each day. It feels like I am sick, in addition to the fatigue I already have. According to the thermometer it is not an actual fever. So my thinking is this: I have an infection somewhere near my sinuses because I feel like crap all the time, I have that weird smell, antibiotics help (briefly), and my sinuses were inflamed enough to justify surgery. But the surgery did not make the infection go away. The possibilities I can think of are that A. the surgery was not done well enough B. the surgery was done well but not targeted enough towards the ethmoids, where the infection is C. one or more bones is infected. I think A is pretty unlikely, I will cover C by trying to get the bone scan, and I don't know what to do for B. How does one look more closely at the ethmoids? Can I get a higher resolution scan of that particular area? Would it help to just do a standard scan but switch the direction of the scan from front-back to top-bottom? Hello Michael I can't help with your diagnosis other than to say your symptoms are almost exactly the same as mine.I will be watching to see if any other more qualified readers can help. Paul <mikesmith9839@REMOVETHIScomcast.net> wrote in message news:c6GdnS4PcLP5XDjZnZ2dnUVZ_q6dnZ2d@comcast.com... > Summary > [quoted text clipped - 52 lines] > standard > scan but switch the direction of the scan from front-back to top-bottom? I'm no expert on sinus CT's, but learned some things recently when my daughter's scan was printed incorrectly to send to the Lahey Clinic. They use "coronal views" to image the sinuses best: it's why you lay on your stomach with your head tilted up. They also do straight cuts.With the coronal view, the ethmoids should be seen clearly. I have researched imaging and sinusitis (I wrote a short article on it back in 2001:http://www.aafp.org/afp/20010901/cochrane.html), and there are issues: sinus CT's are not that specific or sensitive: some patients with bad looking scans have no symptoms and some patients who are clinically miserable have normal looking scans. The national ENT society periodically issues guidelines for sinusitis, and because imaging can be misleading, it usually presents the case to make sinusitis a clinical diagonosis--there tend to be a number of symptoms that patients should have to make the diagnosis. It's great if a scan confirms your symptoms, but no test is perfect and the scan may not reflect your clinical situation. (The whole concept of false positives and false negatives.) I had an osteomyelitis (bone infection) after a sinus surgery, and my main symptoms were exhaustion, feeling feverish and some facial pain. I finally irrigated a piece of dead bone out of my nose (a "squestrium"--my husband does oral surgery and confirmed what it was for me) and then my ENT was able--only after some searching around--to find the spot with the endoscope, and I had two more surgeries to clean up the problem. He did not do the surgery that created the problem. He generously hung in there to clean up a mess created by an "expert" who didn't believe in follow up (or that he could ever have a bad outcome.) Chronic rhinosinusitis is very tough to erradicate. Possible approaches are irrigation (which you do), irrigation with various additives--xylitol, antibiotics, amphotericin B, medical treatment--some long courses of antibiotics with or without steroids. Basically you'll need to work with your ENT. I guess the only thing I wanted to really say was that a scan may not correlate with your symptoms, and that's not unheard of. It doesn't mean you don't have your symptoms, or that they shouldn't be explored and treated. Good luck and I hope you feel better soon. Judy > Hello Michael > I can't help with your diagnosis other than to say [quoted text clipped - 60 lines] > > standard > > scan but switch the direction of the scan from front-back to top-bottom? On 7/1/06 7:26 AM, in article 1151763978.156030.65960@p79g2000cwp.googlegroups.com, "judy.n" > I'm no expert on sinus CT's, but learned some things recently when my > daughter's scan was printed incorrectly to send to the Lahey Clinic. [quoted text clipped - 97 lines] >>> standard >>> scan but switch the direction of the scan from front-back to top-bottom? Actually the day of the CT scan missing disease is almost over. There are the new mini CT scanners that are totally digital, packed into a single CD, and you t use you mouse to scan very fine slices in any direction. Now we routinely find disease/pathology that could not be found by the thicker and limited cuts. Today, it seems almost primitive to have a single flat plate picture to look at, when you can put in the disc and run through all layers and in all directions, enlarge the picture, etc. . Important too, the patient sits in a chair for 10 seconds for this, so there is less discomfort than a dental digital picture, and almost the same amount of radiation. Judy, if your husband is an oral surgeon, he can tell you about the digital scanners for oral surgeons. The CT that was printed incorrectly was available on disk, and for some reason, I wanted the xray films. The tech printed the wrong view and windows.I guess that's been a common problem, and ENT's are putting up films in the OR and finding that they can't use what was printed. The radiologist confirmed it was correct in the computer, and now I have the disk. Even with tiny and variable cuts, isn't it true that not all sinus disease manifests itself on the CT? The prior stats in 2001 were sensitivity and specificity in the 70% range. Judy > On 7/1/06 7:26 AM, in article > 1151763978.156030.65960@p79g2000cwp.googlegroups.com, "judy.n" [quoted text clipped - 113 lines] > Judy, if your husband is an oral surgeon, he can tell you about the digital > scanners for oral surgeons. > Summary > [quoted text clipped - 3 lines] > nothing has changed. I am going to try for a bone scan, what are my other > options? 1. If bone infection is suspected, consult an Infectious Disease Specialist. Even without a bone scan, they can sometimes figure out how to treat bone infections. Usually intravenous antibiotics are more effective than oral antibiotics. 2. The Mayo Clinic theory of Allergic Fungal Sinusitis (AFS). Mayo believes that a hypersensitivity to fungi can set in and predispose you to inflammation and more bacterial infections. The etiology may be genetic. Prior to the Mayo research, it was thought that fungi in the sinuses were rare; they believe it's far more common than anyone ever thought. Obviously the antibiotics you took won't work on fungi. Irrigation with topical antifungals can help. http://www.sinuses.com/fungal.htm  SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. > 1. If bone infection is suspected, consult an Infectious Disease > Specialist. Even without a bone scan, they can sometimes figure out how [quoted text clipped - 10 lines] > > http://www.sinuses.com/fungal.htm Thanks Steven - actually I go to the same doctor as you (Dr. Stein). I was impressed by his bold approach to surgery and it seems like he did an excellent job. But now that it's over he is acting like nothing can possibly be wrong. This came as no surprise, given that every doctor I've been to has done the same thing. 1. I will probably need to go to the specialist you mention given my current doctor's unwillingness to consider the bone infection theory. I am more than willing to try IV antibiotics despite the stories I have heard about side effects. 2. I have an appointment with a Mayo Clinic ENT later this month and I imagine that this is one of the things he will suggest. Heck, if they sold the topical antifungal solution over the counter I would try it right now. 3. Judy, the "coronal view" CT scanning technique that you mention appears to be the same one I've had in the past. If you look at an individual slice, the top of the head is at the top and the chin is at the bottom, correct? 4. Just for the sake of trying I am going to irrigate with a solution of topical antibiotics and/or steroids. Making a steroid solution should be fairly easy as I have plenty of Rhinocort. The antibiotic solution on the other hand will probably require a prescription. I doubt if either of these will provide long term relief, but I feel like hell at the moment and am open to trying pretty much anything. >> 1. If bone infection is suspected, consult an Infectious Disease >> Specialist. Even without a bone scan, they can sometimes figure out how [quoted text clipped - 16 lines] > be wrong. This came as no surprise, given that every doctor I've been to has > done the same thing. Yep, Dr. Eric Stein does a great job with surgery. I had other ENTs look at my sinuses after he operated on them and they all said "Your surgeon did great work." If anybody in the north Boston suburbs needs sinus surgery, he's the right one to do it. The trouble is, surgery, no matter how skillfully done, isn't a guaranteed cure for chronic sinusitis. It didn't cure mine or yours (although mine is *much* better than it was before the surgery). Mayo believes that sufferers of AFS show definite signs of inflamed sinuses on endoscopic examination. I would suggest you stop using any steroids before going to Mayo because steroids can suppress inflammation. No, I don't know of an Infectious Disease Specialist to go to. I've been reluctant to just go "doctor shopping," so I'm waiting for Fate to send me a sign. :-) SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. > No, I don't know of an Infectious Disease Specialist to go to. I've > been reluctant to just go "doctor shopping," so I'm waiting for Fate to > send me a sign. :-) After calling around to local hospitals I can see why. One told me that no appointments were available for a month, another said I needed a referral before they would even set up the appointment. And I'm feeling pessimistic as to what would happen once I did actually see a doctor several weeks from now. "Oh, you have a sinus infection? You need to go see an ENT." "But I am, and he said my sinuses are clear." "You should see one of our ENT's, they're really good." (yeah right) "Ok, how soon could I get an appointment?" "Let's see, the first available would be..... October! Does that work for you?" Of course I could just go to the ER, but I wouldn't know what to tell them. Do a bone scan? They would not consider that an emergency, and just send me through the same channels, resulting in the above scenario. I am going to ask Dr. Stein for help and hope that he can overlook the fact that he thinks nothing is wrong with me. >> No, I don't know of an Infectious Disease Specialist to go to. I've >> been reluctant to just go "doctor shopping," so I'm waiting for Fate to [quoted text clipped - 22 lines] > ask Dr. Stein for help and hope that he can overlook the fact that he thinks > nothing is wrong with me. Recently, Dr. Stein is working on another theory: that gastroesophageal reflux can leak all the way up into the nasopharynx and cause sinusitis. He has seen this syndrome in many of his child patients for a long time, but recently he's starting to wonder if it's true for adults as well. He believes that it's not just the stomach acid, but all the contents of the stomach that matter, meaning that anti-acid medications like Prilosec won't work. Only surgery--Nissen funduplication--will really fix the reflux problem once and for all. I was at the Cleveland Clinic where their Otolaryngology Department is gradually coming around to the idea that reflux can make sinusitis much worse. Unfortunately, both they and Dr. Stein are stymied, because nearly all gastroenterologists disagree about it. When I was at the Cleveland Clinic, the ENTs told me that the Gastroenterology Department there refuses to believe that sinusitis can be helped with reflux surgery and so the ENTs can do nothing further. And here in the Boston area, the gastroenterologists don't believe that reflux can cause sinusitis either. So Dr. Stein has been unable to refer his sinusitis patients to any gastroenterologists because they don't believe him--and so they refuse to do esophageal surgery on sinus patients. He knows I'm good at Google searching and he asked me to try to find him some gastroenterologists who know about sinusitis! SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. Just to add my personal experience of reflux and sinusitis. I had a Nissan fundoplication and it didn't stop the sinus problems.I didn't have it done for sinus reasons anyway,so I wasn't disappointed. Paul > Recently, Dr. Stein is working on another theory: that gastroesophageal > reflux can leak all the way up into the nasopharynx and cause sinusitis. [quoted text clipped - 19 lines] > patients. He knows I'm good at Google searching and he asked me to try to > find him some gastroenterologists who know about sinusitis! > Just to add my personal experience of reflux and sinusitis. I had a Nissan > fundoplication and it didn't stop the sinus problems. did it at least stop your reflux problems? SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. Yes Steven It did stop the reflux,but it causes a lot of other problems like trapped wind and other stuff. Given the opportunity to turn back the clock,I would not have had it done. Thanks Paul >> Just to add my personal experience of reflux and sinusitis. I had a >> Nissan fundoplication and it didn't stop the sinus problems. > > did it at least stop your reflux problems? I would think one would try sleeping on a wedge pillow before having esophageal surgery to correct a reflux problem they aren't sure they have. I found that a wedge pillow prevents most of the reflux. I had GERD and 4 months of Nexium took care of it. [trimmed] > Recently, Dr. Stein is working on another theory: that > gastroesophageal reflux can leak all the way up into the nasopharynx [quoted text clipped - 20 lines] > sinus patients. He knows I'm good at Google searching and he asked me > to try to find him some gastroenterologists who know about sinusitis! SignatureTerry =========================================================== Terry Raymond Smalltalk Professional Debug Package Crafted Smalltalk *Breakpoints* and *Watchpoints* for 80 Lazywood Ln. VW and ENVY/Developer Tiverton, RI 02878 (401) 624-4517 traymond at craftedsmalltalk nospam dot com <http://www.craftedsmalltalk.com> =========================================================== On 7/4/06 10:39 AM, in article Xns97F68AFDE5022traymondcraftedsmall@70.168.83.30, "Terry Raymond" <traymond-nospam-@-craftedsmalltalk.dot.com> wrote: > I would think one would try sleeping on a wedge pillow > before having esophageal surgery to correct a reflux problem [quoted text clipped - 28 lines] >> sinus patients. He knows I'm good at Google searching and he asked me >> to try to find him some gastroenterologists who know about sinusitis! A raised head bed is desirable. Look in used or Craig's list and often you can find surplus or used adjustable beds. Or use blocks to raise the head or a wedge. I think foam wedges are advertised that you place to raise the head of the bed's mattress. > Recently, Dr. Stein is working on another theory: that gastroesophageal > reflux can leak all the way up into the nasopharynx and cause sinusitis. [quoted text clipped - 4 lines] > like Prilosec won't work. Only surgery--Nissen funduplication--will > really fix the reflux problem once and for all. I do have heartburn, so that's something to consider. Still no progress with finding an infectious disease specialist. But I did go back over my journal which is basically a list of all the medications I took each day and how it made me feel. And it seems like steroids (oral, not nasal spray) helped a lot more than antibiotics or surgery ever did. I am reluctant to go back on oral steroids because everyone makes them sound like rat poison. First I am going to try a steroid rinse. Basically I will spray 8 puffs of Rhinocort into my rinsing solution, do the rinse, then let it "sit" in my sinuses. By not tilting my head forward I can keep the solution in my sinuses at least five or ten minutes. Probably won't work, but it's worth a try. Today I had what I thought was a throwaway appointment with a neurologist. But it actually turned out to be quite interesting. He went over my MRI from a couple years ago (which the radiologist had judged to be normal) and noticed that my rearmost molars protruded deeply into both sinuses. He said it looked highly abnormal. But since having that MRI, my wisdom teeth were removed. So it is unclear whether this problem still exists. We are doing another MRI in a few days, I will try to get a disc and post the results online. > Today I had what I thought was a throwaway appointment with a neurologist. > But it actually turned out to be quite interesting. He went over my MRI from [quoted text clipped - 4 lines] > another MRI in a few days, I will try to get a disc and post the results > online. Just a quick update. Went to Mayo, they had no idea what my problem was. And they also borrowed my MRI's so I can't post them here. Anyway, since then I have done some new research that suggests I have some kind of auto-immune disorder. The evidence is circumstantial so far, but still very promising. It looks like my sinus problems might be a minor side effect of this auto-immune disorder (if it does in fact exist). I am commencing a trial of Cyclosporin shortly and will let you know the results. I hope you feel better soon, and the overall problem is both mild and responsive to treatment. Judy > > Today I had what I thought was a throwaway appointment with a neurologist. > > But it actually turned out to be quite interesting. He went over my MRI [quoted text clipped - 14 lines] > auto-immune disorder (if it does in fact exist). I am commencing a trial of > Cyclosporin shortly and will let you know the results. The CT: the coronal view is the "standard" view, it puts your head on a tilt, so the sinus structures become parallel to the floor and can be viewed and compared. The latest improvement is that the CT's are digital and can be further manipulated by computer for lots of views. Still, not all sinus disease shows up on CT. (In medicine there is no perfect test with both 100% sensitivity and specificity--and clearly there are patients with active sinus disease who look normal on endoscopy and CT--the patient's report of symptoms is still crucial, despite technology.) Regarding ENT's north of Boston: I live in RI where we view Boston as "the mecca": I"ve personally had experience with Mass Eye and Ear--the staff surgeons for head and neck have been great, although the resident coverage is spotty. I had a bad experience with a private doctor who operates out of Mass Eye and Ear. I work with a great allergist, and he became frustrated with his chronic sinusitis despite good functional endoscopic surgery, and about 4 years ago, after the first Mayo Clinic reports on treating fungal levels in the sinuses, he discovered Dr. Peter Catalano at Lahey. I've also met with Dr. Catalano, and found him to be a very pleasant and receptive person. He recommended sinus surgery (with the balloon) for my 21 year old daughter, and she is currently declining it. So, other than a nice consultation and some very receptive emails, and the strong recommendation of my allergist colleague--who was treated medically by Dr. Catalano--that's my experience with north of Boston. Ironically, my local RI ENT is a wonderful, thoughtful person who is always open to medical management and is amazingly responsive. So why do Rhode Islanders feel that Boston holds the answer? (Actually I know the answer: Brown medical school is only about 30 years old, and for years the local hospitals acted like tough problems needed to go south to Yale or north to Boston.) Judy > > 1. If bone infection is suspected, consult an Infectious Disease > > Specialist. Even without a bone scan, they can sometimes figure out how [quoted text clipped - 41 lines] > will provide long term relief, but I feel like hell at the moment and am > open to trying pretty much anything. > 1. If bone infection is suspected, consult an Infectious Disease > Specialist. Even without a bone scan, they can sometimes figure out how [quoted text clipped - 10 lines] > > http://www.sinuses.com/fungal.htm I forgot to ask if you could recommend an Infectious Disease Specialist in the Boston area. If not, I will probably just look for one at one of the local hospitals. Michael, i know these posts are old but i was curious if you ever found a solution to your sinuses problems? i am currently going thru what sounds very much like your story and i am hoping there is a light at the end of the tunnel. Kari >Summary > [quoted text clipped - 41 lines] >resolution scan of that particular area? Would it help to just do a standard >scan but switch the direction of the scan from front-back to top-bottom? Michael, i know these posts are old but i was curious if you ever found a solution to your sinuses problems? i am currently going thru what sounds very much like your story and i am hoping there is a light at the end of the tunnel. Kari >Summary > [quoted text clipped - 41 lines] >resolution scan of that particular area? Would it help to just do a standard >scan but switch the direction of the scan from front-back to top-bottom? |
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