 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Sinusitis / August 2006If you could go anywhere, see anyone for evaluation and treatment of sinusitis...
Where would it be? And who, in particular? I just don't want to waste my time, but I'm prepared to fly if necessary, despite my air travel phobia. Susan Of course there is Mayo but if I had my druthers, my second choice would be to find some reputable doctor (ent or some other) who themselves is stricken with sinusitis or similar conditions to mine; my first choice would be to go to the doctor of that doctor. of course this is not likely to happen and i have bounced from one to another. my last visit was to an Infectious Disease Specialist who sat with me for 10 minutes, gave me a prescription for something that i asked for and wrote a letter mostly paraphrasing what i told him to my GP -- also recommending that i visit somewhere that i had already been (and told him so). I just received his bill for $250.00. >I just don't want to waste my time, but I'm prepared to fly if >necessary, despite my air travel phobia. Mayo first, becaue they investigate very broadly and systematically and are a world-leading center of expertise in numerous specialties including internal medicine, infectious diseases, etc,. besides Otololaryngology. I think it may well pay off in difficult cases such as you may have. They might find something unexpected. Or not, but there is the possibility. Steven and I have both been there..... > Mayo first, becaue they investigate very broadly and systematically and are a > world-leading center of expertise in numerous specialties including internal > medicine, infectious diseases, etc,. besides Otololaryngology. > I think it may well pay off in difficult cases such as you may have. They > might find something unexpected. Or not, but there is the possibility. Steven > and I have both been there..... Mayo is a big place; is there any name in particular? I confess to having a jaded view of Mayo due to their lousy track record with CFS and Lyme disease. I'm concerned that if I go there with a dx that they have taken a *public* stance against (chronic Lyme) that my sinuses and I will get short shrift. Meanwhile, I have my month of Augmentin with refill, the name of a local ENT from my internist/inf. diseases doc... Susan >Mayo is a big place; is there any name in particular? I would suggest that you would need to resrach the names in their Otorhino. department and find a person you wanted to same, and make an appointment directly with him or her. Then that person can refer you out when you get there fo infectious diseases and internal medicine etc. >I confess to having a jaded view of Mayo due to their lousy track record >with CFS and Lyme disease. I'm concerned that if I go there with a dx >that they have taken a *public* stance against (chronic Lyme) that my >sinuses and I will get short shrift. I would be just be for *an* opinion or to find another area that might have been missed completely up to now. You do not have to take the opinion you get. Really there are a lot of people at Mayo and they do not all have the same views on issues. They all take part in conferences and on panels and are aware of all points of view and that nothing is ever100% sure in medical science. I do not have a view 100% either way on the Lyme controversy, and I do not imagine that you do either. There certainly are cases where it occurs, but it is over-diagnosed at times. I suspect that good doctors on either side of the Lyme debates can still do a good job on patients both with and without Lyme disease. >Meanwhile, I have my month of Augmentin with refill, the name of a local >ENT from my internist/inf. diseases doc... Good. >>Mayo is a big place; is there any name in particular? > > I would suggest that you would need to resrach the names in their Otorhino. > department and find a person you wanted to same, and make an appointment > directly with him or her. Then that person can refer you out when you get there > fo infectious diseases and internal medicine etc. That's a bit too much of a crapshoot for me, especially since all expenses would be out of pocket. > I would be just be for *an* opinion or to find another area that might have > been missed completely up to now. You do not have to take the opinion you get. I want more than just a possibly unhelpful opinion for my buck. > Really there are a lot of people at Mayo and they do not all have the same > views on issues. They all take part in conferences and on panels and are aware > of all points of view and that nothing is ever100% sure in medical science. Institutionally, they've been wrong more than right on matters that I'm knowledgable about and that affect me personally. > I do not have a view 100% either way on the Lyme controversy, and I do not > imagine that you do either. You;d be wrong to surmise you know what I do, or what I think about the Lyme scandal. There certainly are cases where it occurs, but it > is over-diagnosed at times. It's both overdiagnosed and underdiagnosed. So far, the underdiagnosis has disabled many folks. > I suspect that good doctors on either side of the Lyme debates can still do a > good job on patients both with and without Lyme disease. I guess if I weren't made horribly ill and disabled by tick borne diseases, I'd say blase stuff like that, too. I suppose if I hadn't sat in a room full of academic doctors explaining why they were being hamstrung by folks at the fed level and constrained from publishing truthful scientific results, I'd live in blissful ignorance, too. Susan >> I do not have a view 100% either way on the Lyme controversy, and I do not >> imagine that you do either. > >You;d be wrong to surmise you know what I do, or what I think about the >Lyme scandal. Susan, Where did I say that? What I said was that neither of us knows with 100% certainty what the whole story on Lyme is. In terms of expenses out of pocket, if you mean living costs, them Rochester Minnesota is cheap. You can stay in a Bed and Breakfast there at minimal cost. They cater to the Mayo out-of-town crowd. If you have no insurance and also have to pay doctor and test bills, then I would not go to Mayo because they do lots and lots of tests. If you do have insurance, they are great from that point of view because they accept every insurance company in the U.S. I believe. > Where did I say that? What I said was that neither of us knows with 100% > certainty what the whole story on Lyme is. And you'd be wrong; one of us does. One of us spent years steeping in it and getting first hand, back channel information from the parties involved. > In terms of expenses out of pocket, if you mean living costs, them Rochester > Minnesota is cheap. You can stay in a Bed and Breakfast there at minimal cost. > They cater to the Mayo out-of-town crowd. I mean travel, living and medical expenses, the whole enchilada. > If you have no insurance and also have to pay doctor and test bills, then I > would not go to Mayo because they do lots and lots of tests. I have insurance, but we opted for an open/direct HMO once our more expensive plan instituted a drug formulary. I now have no out of network benefits. > If you do have insurance, they are great from that point of view because they > accept every insurance company in the U.S. I believe. But my company is not likely to include them. I might be able to fight for an out of network service if no one in network is skilled, but I'd have to prove that. Susan Susan, I've fallen into the trap of thinking that the experts will have the answers. I've gone to Mass Eye and Ear, and Lahey Clinic. Now, I've gotten excellent care for my husband from the former head of head and neck surgery at Mass Eye and Ear--Richard Fabian. Dr. Fabian was an amazing combination of superb clinical skills, no need to feed his ego and a willingness to listen and think "outside the box". He removed my husband's disease parotid gland in a 6 hour surgery, and thanks to his skill, my husband suffered no paralysis. When he had post-op complications, he listened to a suggestion that I got from my mother's friend, who had had a parotid complication after a face lift, and decided it was "brilliant", and we tried a trans-scop patch to treat a salivary abscess and it worked. He, unfortunately, has retired to Florida. His replacement, Dr. Lin, is a sweetheart as well, and freely admits when he's stumped--that is the sign of someone you can trust. My ENT has had lots of sinusitis, and irrigates and tries all the irrigation systems, and loves when I send him articles, and tries medical management--and I adore him. My personal experience with a private expert who uses Mass Eye and Ear was horrible. He was arrogant and refused to follow up and treat an obvious infection: because HIS patients all did well. Really scary. We've seen a really nice expert at Lahey, and so far are opting to forego surgery on my 21 year old daughter, so aside from the initial consultation, and emails around her decision to hold off on surgery, we haven't had too much experience. I did appreciate that he emailed that she is her that she is his patient whether or not she decides to agree with his suggestions. Two of my colleagues work at Mayo: neither in ENT. Neither are superhuman. It's the individual, not the institution that counts. I work with a pediatric allergist who had terrible sinus problems that persisted after surgery: he an expert who refused to do further surgery--saying "I can open the door, but I can't change the wallpaper." He went to Dr. Catalano and was treated with topical and oral sporonox, and he thinks Dr. Catalano is amazing. Again, it's the individual. Judy > x-no-archive: yes > [quoted text clipped - 26 lines] > > Susan > Susan, > I've fallen into the trap of thinking that the experts will have the [quoted text clipped - 3 lines] > amazing combination of superb clinical skills, no need to feed his ego > and a willingness to listen and think "outside the box". No egolingus required, that's one of my main criteria! I've learned not to fall into that expert trap from a young age; I have a host of medical problems that are a result of past medical care I accepted unquestioningly at academic medical centers since my teens. He removed my > husband's disease parotid gland in a 6 hour surgery, and thanks to his > skill, my husband suffered no paralysis. When he had post-op [quoted text clipped - 4 lines] > Florida. His replacement, Dr. Lin, is a sweetheart as well, and freely > admits when he's stumped--that is the sign of someone you can trust. Yes; I'll trust a doctor who utters "I don't know" with regularity over a doc given to certainty any day. > My ENT has had lots of sinusitis, and irrigates and tries all the > irrigation systems, and loves when I send him articles, and tries > medical management--and I adore him. Where is he located? Has he helped more than others? > My personal experience with a private expert who uses Mass Eye and > Ear was horrible. He was arrogant and refused to follow up and treat an > obvious infection: because HIS patients all did well. > Really scary. I find myself wishing you'd report this to the state he operates in, to the licensing board, with documentation of the surgical follow ups you required. I understand this is a hot potato as a physician, but think of all the folks you could protect! We've seen a really nice expert at Lahey, and so far are > opting to forego surgery on my 21 year old daughter, so aside from the > initial consultation, and emails around her decision to hold off on [quoted text clipped - 4 lines] > superhuman. > It's the individual, not the institution that counts. This is true, but institutions also have a way of punishing those who don't toe a certain line. > I work with a pediatric allergist who had terrible sinus problems > that persisted after surgery: he an expert who refused to do further > surgery--saying "I can open the door, but I can't change the > wallpaper." He went to Dr. Catalano and was treated with topical and > oral sporonox, and he thinks Dr. Catalano is amazing. Is Dr. Catalano the one at Lahey? I just got an rx for fluconazole from my ID doc, but haven't tried it yet, I'm taking too much stuff. Maybe I should crush some tabs and irrigate with them? Susan Susan, I wish I knew the protocol for topical antifungals.(I'll have to learn it.) I've prescribed fluconazole for yeast infections, but it's just a single dose, with a repeat dose as needed. I haven't used it on a continuous basis. The fungus idea is a reasonable concern. My ENT is located in Providence, RI. We used to work at an HMO together, that ultimately went bankrupt, and he went into private practice. I've always respected him because he's a specialist who behaves like a primary care physician: he takes responsibility and follows patients over the long haul. He's always willing to acknowledge when he's venturing into new territory, and accept suggestions from me or others. He's helped both my daughters as well. When my husband's parotid gland went ballistic, and we were still at the HMO, he willingly allowed him to go out of network. He still comments that he's glad he didn't do the surgery--although he could have. (I kind of said: If my husband wakes up with half his face paralyzed, do you want to have been the surgeon?) Re: reporting the ENT who was so horrible to the board, I definitely should have, and could stll. I kept all my notes of phone calls, etc. My chairman told me to at the time, but I was too sick to take it on. Dr. Catalano is at Lahey. Judy > x-no-archive: yes > [quoted text clipped - 65 lines] > > Susan > Susan, I wish I knew the protocol for topical antifungals.(I'll have to > learn it.) I've prescribed fluconazole for yeast infections, but it's > just a single dose, with a repeat dose as needed. I haven't used it on > a continuous basis. I saw fluconazole flash by as I was reading adrenal stuff. I can't recall if it was to be avoided, or if it was a treatment, though. My head is very, very fogged in. > The fungus idea is a reasonable concern. > My ENT is located in Providence, RI. We used to work at an HMO > together, that ultimately went bankrupt, and he went into private > practice. I've always respected him because he's a specialist who > behaves like a primary care physician: he takes responsibility and > follows patients over the long haul. Like my PCP/ID doc! He's always willing to acknowledge > when he's venturing into new territory, and accept suggestions from me > or others. He's helped both my daughters as well. When my husband's [quoted text clipped - 3 lines] > If my husband wakes up with half his face paralyzed, do you want to > have been the surgeon?) He sounds wonderful, and you were very considerate of him, too. > Re: reporting the ENT who was so horrible to the board, I definitely > should have, and could stll. I kept all my notes of phone calls, etc. > My chairman told me to at the time, but I was too sick to take it on. > Dr. Catalano is at Lahey. I understand that feeling. Still, I hope you do so, it could help others. Susan >>id I say that? What I said was that neither of us knows with 100% >> certainty what the whole story on Lyme is. > >And you'd be wrong; one of us does. One of us spent years steeping in >it and getting first hand, back channel information from the parties >involved. Nobody know anything with 100% certainty. That's all I said. >> If you do have insurance, they are great from that point of view because they >> accept every insurance company in the U.S. I believe. > >But my company is not likely to include them. I might be able to fight >for an out of network service if no one in network is skilled, but I'd >have to prove that. Right was I was trying to pass along is that Mayo is already "in network" for just about every insurance company, because they will accept low rates.. If you call the HMO departement at Mayo they can probably tell you regarding your insurance company if you do consider them... >>>id I say that? What I said was that neither of us knows with 100% >>>certainty what the whole story on Lyme is. [quoted text clipped - 4 lines] > > Nobody know anything with 100% certainty. That's all I said. Knows what, exactly. >>>If you do have insurance, they are great from that point of view because they >>>accept every insurance company in the U.S. I believe. [quoted text clipped - 5 lines] > Right was I was trying to pass along is that Mayo is already "in network" for > just about every insurance company, because they will accept low rates.. I know that. My plan only has a local in network provider benefit. You > If you call the HMO departement at Mayo they can probably tell you regarding > your insurance company if you do consider them... I don't have to call Mayo to explain my own insurance contract to me or to use the online network provider listing. I don't have access to the national network on my plan. Susan Susan, One other thought: you live in the NY area: there must be good people nearby. My daughter's fiance went to Mt. Sinai for medical school--from what he reported there seemed to be good people there. And as we discussed, big name institutions don't necessarily have the best care, just the biggest egos and grants. Sometimes the best care comes from the unheralded community people--like the ENT your PCP recommended. Judy > x-no-archive: yes > [quoted text clipped - 29 lines] > > Susan > Susan, > One other thought: you live in the NY area: there must be good people [quoted text clipped - 4 lines] > comes from the unheralded community people--like the ENT your PCP > recommended. So true. Right now, I'm realizing/suspecting that the awfulness I'm enduring is from adrenal insufficiency, which used to be mild in my case. Recently, I've been taking increasingly massive doses of potassium for viselike foot and ankle cramping. I've been very lightheaded, intensely nauseated, fatigued and achey for weeks, in a different way than Lyme or sinus makes me feel. I've been feeling jittery and panicky at bedtime for a few weeks, crashed in midafternoon. As I sucked down a gram of potassium this a.m. something reminded me of adrenals, and I looked it up. I don't have an endo. I don't know of any good endos on LI, but I have to try and find someone on Monday. I'm short of breath, exhausted, and just beyond doing anything. The only good part is I've been steadily losing weight for weeks due to the nausea. The bad part is that the stuff I should be eating as a DM is what nauseates me the most. Some literature says the nausea calls for emergency care, but I don't want to make an emergency call to my doc in which I'm dx'ing myself, yet again. I'm actually considering using a bunch of rhinocort to see if I can boost myself a bit. Susan Susan, I always use the rule that if I'm not calling in the middle of the night, I'm not making that much work for the on-call person. It sounds pretty horrible, and a bottle of rhinocort probably equals about 5 mg of prednisone. I'd call and at least try and come up with a plan of action: I always feel like you shouldn't have to diagnose and treat yourself. No one likes call, or likes calling in, but sometimes it's prudent. You don't want to know the ridiculous call I made last week when my daughter had a rash, and I decided it was "erythema multiforma", and ultimately it was poison ivy. Why we don't treat our family members. My dermatologist diagnosed it over the phone, but saw her the next day to confirm it--and even he admitted it wasn't "classic". So, if I call for poison ivy--huge emergency, right?--you can call for adrenal insufficiency. You'd be justified. I was just panicky. Judy > x-no-archive: yes > [quoted text clipped - 30 lines] > > Susan > Susan, > I always use the rule that if I'm not calling in the middle of the > night, I'm not making that much work for the on-call person. Yabbut, I've never raised the past hx of AI with my current doc, and I'm afraid that calling and saying, "oh, I also have this condition that Dr. I hasn't diagnosed, so I did it myslf..." I haven't even thought to mention all the potassium I've been sucking down, increasingly. > It sounds pretty horrible, and a bottle of rhinocort probably equals > about 5 mg of prednisone. I'd call and at least try and come up with a [quoted text clipped - 4 lines] > daughter had a rash, and I decided it was "erythema multiforma", and > ultimately it was poison ivy. :-) >Why we don't treat our family members. My > dermatologist diagnosed it over the phone, but saw her the next day to > confirm it--and even he admitted it wasn't "classic". So, if I call for > poison ivy--huge emergency, right?--you can call for adrenal > insufficiency. You'd be justified. I was just panicky. My doc's office doesn't have an endocrinologist. My big fear is that they'll want to do the ACTH test, which was normal years ago even when my cortisol was 1.5 instead of 15 as it should've been. That endo could've killed me, I later discovered by researching online; just dumb luck that she didn't. I just don't know how many frogs I'll have to kiss til I get an endo who won't be put off by my self eval and comorbid health issues. OTOH, it's nice to know I have something that improves within a few days of tx, once I get it. Thanks, Judy. Susan I always feel like you shouldn't have to diagnose and > treat yourself. Boy, do I believe this! OTOH, my child's TBDs weren't diagnosed til I'd bought and read nearly an entire Mercke Manual and all of Medline. Nor my PCOS, IR and DM type2. I had to diagnose and then find amenable docs for all. Same with sinusitis, A.D.D. Now this. I'd love to relax, stop having to be so vigilant and let some competent professional do the driving, but so far that hasn't worked out for me. Frankly, being sick and exhausted, and having to do the diagnostic research is draining the life out of me. :-/ Susan Susan, When you wrote: > I'd love to relax, stop having to be so vigilant and let some competent > professional do the driving, but so far that hasn't worked out for me. > Frankly, being sick and exhausted, and having to do the diagnostic > research is draining the life out of me. You accurately summed it up. To be ill, or have a family member ill, and have to do all the heavy lifting is exhausting. Unfortunately, it necessary. When you find someone who is helpful it's great, but even then you need to be on top of it. I hope you feel better soon. Personally, I wouldn't worry about the appropriateness of dropping a new diagnosis on someone, the crucial element is that you get the care you need in a timely manner. (Remember, I called after hours about poison ivy.....) Judy > x-no-archive: yes > [quoted text clipped - 16 lines] > > Susan > Susan, > When you wrote: [quoted text clipped - 8 lines] > necessary. When you find someone who is helpful it's great, but even > then you need to be on top of it. So, you've read *all* my mail? ;-) > I hope you feel better soon. Thanks; I checked the about.com top thyroid docs list for the names of supposedly smart, openminded and considerate endocrinologists in my area. They're not in my plan, but that's secondary. The one in my plan could've killed me with an ACTH stimulation test, knowing that I have an abnormal HPA axis function. Of course it was normal, and she sent me off with 1/10th the adrenal function I was supposed to have, clammy, shaking and weak, years ago. No way I'm walking into that situ again. I'll pay. > Personally, I wouldn't worry about the appropriateness of dropping a > new diagnosis on someone, the crucial element is that you get the care > you need in a timely manner. (Remember, I called after hours about > poison ivy.....) Well, I just managed to eat, anyway. A little Rhinocort on my tongue may've helped, or maybe it was just a sympathetic hug from my wonderful husband that did it. Still, as a DM type 2, it's very bad to only be able to tolerate starches and cheese. Susan >I don't have to call Mayo to explain my own insurance contract to me or >to use the online network provider listing. Sometimes the insurer will approve it no matter what the contract says. All they care about is cost.... > I don't have access to the >national network on my plan. > >Susan > Sometimes the insurer will approve it no matter what the contract says. All > they care about is cost.... Yes, I've had that experience in extraordinary circumstances, but in this case, the cost will be much higher than my use of negotiated rates from NY ENTs. :-/ Susan > x-no-archive: yes > [quoted text clipped - 11 lines] > > Mayo is a big place; is there any name in particular? I saw Dr. Kaiser Lim at Mayo. He is very thorough. Mayo sounds to me like it is of value in giving you a good look at the big picture but are they any better at finding a cure or a plan for betterment than you and i can be through the use of this and other websites as well as with the help of a good, open GP? Did your and Stevens conditions improve after your visit to Mayo or did it just leave you more educated? I'm not Steven nor Don and they are probably more educated about all of this than I am, but I will tell you a little about my personal experience with Mayo. I went to Mayo, Jacksonville in 1997. I took numerous records including a CT scan that showed moderate congestion in my right sphenoid sinus and both maxillaries. This had been done the previous year. At that time I didn't know what was wrong with me. I had thought chronic sinusitis numerous times but kept getting told that I didn't have sinusitis, and I was having body aching and neurolgical problems as well. I saw an allergist there, Dr. Guaderaus, who was wonderful. He was the first to ever do nasal endoscopy and he noted purulent drainage from my sinuses and said that he did not think my CT scan was normal. He was the first person to actually suggest that sinusitis might be my problem. He even brought my husband in to look at it on a moniter. He put me on ZPak and said if I didin't improve that minimal surgery to open up the main ostia might be beneficial. After starting the ZPak, I started coughing up globs of dark brown mucus sometimes with green. I still don't know to this day whether something started in my lungs that spread to my sinuses or vice versa. I also saw a neurologist there because I had developed neurological symtpoms at the same time as when the CT scan showed infection in the right sphenoid and had brought an MRI that showed an enhanced area in the right cerebral peduncle, that ended up later showing up as an area of tissue loss. This was never addressed either, even though the report said that there should be further follow up. Since this part of the brain is close to the sphenoid sinuses, I now believe that I may have had an abscess there. At any rate, I went back the next year to see a pulmonologist and ENT. I had been diagnosed by a local pulmonologist as having a small area of bronchiectasis in one of my lungs. To make a long story short, the pulmonolgist said I didn't have significant lung problems, that the sinusitis might be causing them. So I saw an ENT there, who was very arrogant. He didn't even do a new CT scan nor endoscopy, and declared that I did not have sinusitis. When I told him what Dr. Guaderaus said, he pretty much called me a liar. I made him look it up on his computer and pointed it out to him, then I left the room because I would not deal with someone of this caliber. I also saw an infectious disease doctor at both visits who determined I didn't have anything of an infectious nature. I did end up having sinus surgery in 1999 and had a partial ethmoidectomy and did somewhat better for a few years. But the sphenoids were never addressed. Then in the spring of 2002 I started washing globs of the same brown mucus out of my head. It has taken me 4 years of living hell to find someone to take this seriously. I've been all over the country and for 2 winters I wanted to die I was in such pain and have all kinds of strange bacteria and fungi cultured from my sinuses. I finally just recently found DR. David Sherris who was at Mayo, Rochester, and is now at Buffalo, NY. I had sent him 2 recent CT scans and medical history and records, but didn't include the one with the sphenoid sinusitis because it had been so long ago, that I had forgotten about it. The first question that he asked me was if I had ever had spenoid sinusitis. As it turns out, I had surgery 3 weeks ago to open up both sphenoids and frontals. The right one was almost completely blocked. I got back the pathology report that showed mild chronic inflammation in all of these sinuses even though I have been on low dose prednisone since November. I now have been diagnosed with steroid dependent chronic sinusitis. I don't know if the surgery is going to help yet or not because this has gone on so long and there are some other environmental factors involved including the fact that I live in East Tn. which is one of the worse areas for sinusitis. I may have to move. It may be different there now. They are mainly focusing on the eosinophillic fungal sinusitis. I'm sure they do surgery if it is obvious from CT scans that there is a problem. But I still feel that CT scans are sometimes either under read or do not always tell the entire story. I just talked to a woman today who had a large polyp in one of her maxillaries several years ago. It was not giving her any problems. She had gone to an ENT because of a small growth on her nose and this was found. The ENT insisted on doing surgery, and she has had problems ever since. This is one of the same ENTS who said I didn't have sinus problems. If you live anywhere near Florida, I would recommend Dr. Guaderaus, even though he is not an ENT, he might point you in the right direction. If you live anywhere near NY, I would recommend Dr. Sherris. He is the ONLY ENT who saw this inflammation and narrow ostia after years of searching. He is also one of the pioneers in the eosinophilic fungal sinusitis, so if that turns out to be your problem, he could help. He tests the mucus for MBP and eosinophils. Since I was on prednisone, though, he said it would mask that for me. I know a lot of this is a repeat of what I've already said, but I can't stress enough the importance of getting sinusitis diagnosed and treated in the early stages. It is very difficult though, because the best ENTS will be honest with you and tell you that they don't know what causes it. There are a bunch of theories and finding the one that best fits you is very difficult. Kathyw > Mayo sounds to me like it is of value in giving you a good look at the big > picture but are they any better at finding a cure or a plan for betterment [quoted text clipped - 3 lines] > Did your and Stevens conditions improve after your visit to Mayo or did it > just leave you more educated? Kathy, Thank you for all the information. It really proves that it's the individual physician, not the institution that counts. I have literally had my worst experiences at the finest national centers. My local ENT has provided far superior care: but I got desperate for relief and ran up to Boston and ended up with a year long bone infection and a national expert who refused to see me back--because his patients always did well. My local ENT had to do two surgeries to remove dead bone and scars. I kept telling him he didn't have to clean up someone else's mess: but he's so decent and professional that he did exactly that, and did it so well. Also, whenever I dig up a new article about a different approach, or he hears about something, he shares it with me. It's invaluable. You are completely correct about sinus CT's and MRI"s for that matter: they are helpful but far from perfect in diagnosing sinus disease. They can show abnormalites in patients who feel fine and look perfectly normal in patients who have significant disease--there was a recent post, about negative sinus CT's and then significant disease found by biopsy during surgery. MRI's are notorious for showing sinus disease in just about everyone: almost all scans report mucosal thickening and fluid levels. So, they can be either too sensitive or not sensitive at all. The second ENT you saw at Mayo sounds horrible. I hope you're improving. You said Tennessee was bad for sinuses: I live in New England and everyone here thinks it's a bad area for sinuses, and my sister is desperately trying to move out of the Bay Area of California because she's had a seven year infection. I wonder where the good area for sinuses is? Maybe in an area of low humidity, low pollution and low allergens--I wish I knew where that was. Again, thanks for all the excellent information. Judy > I'm not Steven nor Don and they are probably more educated about all > of this than I am, but I will tell you a little about my personal [quoted text clipped - 90 lines] > > Did your and Stevens conditions improve after your visit to Mayo or did it > > just leave you more educated? >I wonder where the good area for > sinuses is? Maybe in an area of low humidity, low pollution and low > allergens--I wish I knew where that was. Desert areas; AZ, NM. A friend went to AZ a couple of summers ago, and the infection she didn't realize she had started literally pouring out of her nose two days later. And humidity below 50% means NO DUST MITES, either! Susan I actually got an amazingly productive infection in Phoenix once. I found Colorado helpful: I had flown with a mild virus, and then went to a dude ranch in Pike's Peak National Forest, and the clean dry air just made it all better. And it was so beautiful. Once, I thought I was beating a cold and I just leaned down (I was at work) and discovered I had this faucet of infection. The joys of sinusitis. When I was developing my osteomyelitis, the world expert told me "to stop obsessing about what comes out of your nose" when he refused to see me in follow up for a post op infection. Finally dead bone came out of my nose.... I do agree, low humidity, is probably the key. I've got to check out Santa Fe... Judy > x-no-archive: yes > [quoted text clipped - 9 lines] > > Susan Judy, I have appreciated all of your input into the group. I'm sorry that you have had a similar experience, but am so glad that you as a doctor are validating our experiences. I think you are providing very valuabe information to the group. I had what I thought was a very good primary care doctor for 15 years, and he believed all along that my sinuses were the problem. He had seen all of the junk that I had coughed up and had coming out of my head. But then he sent me to all of these "specialists" who said I didn't have a problem, so he finally got tired of dealing with me and at a regularly scheduled appointment "fired" me, then sent me a certified letter telling me that he had been getting conflicting information from a local ENT and ID doctor, and felt he couldn't be objective any more. I assume they called him because this was after I complained to the Dean of the medical college (that one of the doctors was affiliated with) about the ID doctor who had also refused to see me again even after I had Blastomyces cultured from my sinuses a 2nd time after being treated. This was one of the most humiliating and disturbing experiences that I have ever had besides being so ill that I couldn't really do anything about it. In the meantime, I've had to find a new PC doctor and start over. I have told my husband that if we had the money we would buy a camper and just travel to different parts of the country to see what part is best, but like you said even Arizona can be bad. I think the dryness may make things worse in some people. It probably depends upon the individual and what they are susceptible to. In my case extreme weather changes and mold exposure seem to be primary factors. I don't know of anywhere that you wouldn't have any of these. However, I did feel better while I was in Denver, Colorado; maybe the altitude? Kathyw p.s. Susan's suggestion of Santa Fe sounds appealing too. > p.s. Susan's suggestion of Santa Fe sounds appealing too. That was Judy's. Any desert will do. :-) Everyone with sinusitis I know who's moved to a desert hasn't had a problem since. Just a handful of anecdotes, but still, after years of CS. Since my two worst allergies are dust mites and mold, it's a no brainer. Susan Kathy, That is so disturbing about you being "fired" after advocating for yourself. It is what has stopped me from pursuing complaints about the ENT who treated me, and a pulmonologist in Boston who was horrible to my daughter--who ended up in the ER within 48 hours of moving into a mold infested dorm room. My sister was treated at Kaiser Permanente, poorly and with lots of fights to even access care, and after multiple courses of antibiotics she grew Rhizpus--another mold. Her primary care doctor told her not to worry about it....Her sinusisits has ruled her life for the last decade. She did ultimately convince the Kaiser ENT to operate on her despite a "normal" CT, and then had a severe post-op bleed--they sent her home still bleeding to cross the San Rafael bridge--she called me and I told her to go to the ER, where she was admitted. Her surgeon saw her the next day and was annoyed at her. These situations get so horrible. The problem is that sinusitis is wide spread, very difficult to treat, surgeons are geared to "quick fixes: they like to do surgery and not see you back except for a post-op check and primary care doctors are being instructed in harsh terms not to over use antibiotics. Also, when patients don't get better, doctors get frustrated and very often blame the patient. My sinuses have been so much better since I started low dose biaxin--250mg/day--in 2002. I found an article at a course, where I was in a lecture about how to use the web, and my ENT said we had nothing to lose. My allergist evaluated me further, and found an IgG subtype deficiency. Now both my daughters are on low dose macrolides, the older one on biaxin, the younger on zithromax 250mg/week (she takes migraine medicines that interfere with biaxin.) Having a doctor on your side makes all the difference. Susan and I had written about this Time Magazine article from the early summer, about the horrible care that doctors and their families get when they're sick. It's just the usual care, but we expect that we can navigate they system better--and we can't. One doctor wouldn't leave his wife's side because he had to "protect her from the care". My sister has really thought about moving for her sinuses. She's tried various desert locations in California and Utah. Colorado--away from the pollution of Denver--was good for me. Good luck and thank you for sharing your story and all your kind words. Judy > Judy, > [quoted text clipped - 30 lines] > > p.s. Susan's suggestion of Santa Fe sounds appealing too. Typos: it was Rhizopus. And I really garbled sinusitis. Judy > Kathy, > That is so disturbing about you being "fired" after advocating for [quoted text clipped - 71 lines] > > > > p.s. Susan's suggestion of Santa Fe sounds appealing too. >Mayo sounds to me like it is of value in giving you a good look at the big >picture but are they any better at finding a cure or a plan for betterment >than you and i can be through the use of this and other websites as well as >with the help of a good, open GP? I thnk so in general - far better. I find that most GP's will not investigate anything beyond the most obvious. Maybe your's is better. But experiences will vary of course and they wil not suit everyone. They are quite conservative about surgery. Wher they shine is in cross-disciplinary referrals etc. They willhave you back and forth to several specialists all same day. And their procedures are solid if you do neec one. With local doctors, you have to do piles of research to be sure that ever referrral specialist is non incoometent or using outdated procedures or diagnostic criteria or labs. All of Mayo's labs abd proecures and standards are national models. Taht counts for something. Now, I would say they are just a supplement to you local doctors, not a replacement. The main thing I would use them for is to make sure that I had not missd a diagnosis or illness, and also for second opinions. I would not ordinarily use them for ongoing mannagement of a chronic illness (such as sinusitis). >Did your and Stevens conditions improve after your visit to Mayo or did it >just leave you more educated? >Did your and Stevens conditions improve after your visit to Mayo or did it >just leave you more educated? Well they did not prescribe anything in my case. They suggested certainly dietary and nutitional factors and anemia were playing a role and they were right. I suspected it already but wanted to explore it more thoroughly. They were the only onws who ever even asked about diet and nutrition. Most local doctors are too-narrowly focused and specialized in my experience..... My older daughter has IgA deficiency and has the asthma and sinusitis that go along with it. She had a horrible year due to a moldy dorm room. When my ENT saw her on a semi-emergency basis--he squeezed her in on a Friday pm and she drove down from Boston to RI (contrary to the prevaling wisdom of where the best medical care is) he specifically counseled her to eat an anti-inflammatory diet: high in monosaturated fats and avoid transfatty acids. This was an urgent visit, and he included it in his counseling. So, some very good community doctors will see the big picture and be very thorough. Conversely, going to a nationally ranked center is no guarantee of excellent care. Judy > >Did your and Stevens conditions improve after your visit to Mayo or did it > >just leave you more educated? [quoted text clipped - 7 lines] > They were the only onws who ever even asked about diet and nutrition. Most > local doctors are too-narrowly focused and specialized in my experience..... > My older daughter has IgA deficiency and has the asthma and sinusitis > that go along with it. She had a horrible year due to a moldy dorm [quoted text clipped - 7 lines] > very thorough. Conversely, going to a nationally ranked center is no > guarantee of excellent care. The most peppery olive oils with the strongest bite are said, by research published recently, to have the most anti inflammatory properties. To further reduce inflammation, she should eat *really* low carb, since insulinemia promotes it, in part, I just recently learned, by suppressing steroidogenesis. Susan >My older daughter has IgA deficiency and has the asthma and sinusitis >that go along with it. She had a horrible year due to a moldy dorm [quoted text clipped - 7 lines] >very thorough. Conversely, going to a nationally ranked center is no >guarantee of excellent care. Correct but I think I know which the odds favor..... > Correct but I think I know which the odds favor..... In my case, with a 35 year long intensive medical history, academic medical centers are where I've gotten the worst neglect, dismissiveness and overall screwing over. In some cases, I'm still paying with complications, many years later. Susan >In my case, with a 35 year long intensive medical history, academic >medical centers are where I've gotten the worst neglect, dismissiveness >and overall screwing over. I recommended Mayo, not academic medical centers in general, not nationally -ranked medical centers in general, in this case. Mayo is quite different from anything else. >In some cases, I'm still paying with complications, many years later. I would never place all of my eggs in one basket....or all of my bets on one horse..or go to only one kind of doctor...or generalize that alll xxxx types of place are the same, and I doubt that you would either.....(but I realize that sometimes one has to deal with more urgent problems where one is). Don, I know doctors who work at Mayo, and they're not superhuman. I agree with Susan that at times national centers can hold answers, but they can also hold arrogant attitudes that they have the only correct approach and a refusal to truely consider a problem from all angles. The worst care I ever got from from a national expert who could not acknowledge that I had post-op complications, because HIS patients always did well. It said so in the post-op instructions. Please don't confuse reputations and brand names with quality, it's not a guarantee. Don't be misled by marketing. Judy > >In my case, with a 35 year long intensive medical history, academic > >medical centers are where I've gotten the worst neglect, dismissiveness [quoted text clipped - 11 lines] > place are the same, and I doubt that you would either.....(but I realize that > sometimes one has to deal with more urgent problems where one is). >Don, > I know doctors who work at Mayo, and they're not superhuman. I agree [quoted text clipped - 7 lines] >not a guarantee. > Don't be misled by marketing. You are failing to recognize excellence where it truly lies. Don, What are you basing this on? I thought I read in one of your posts that you really didn't find any answers there? > You are failing to recognize excellence where it truly lies. >Don, > What are you basing this on? I thought I read in one of your posts >that you really didn't find any answers there? That would not be an accurate summary of what I said. I would never expect fianl answers anyway and I was not looking for such. Sinusitis is too complicated to look for qquick fixes. In general, just want plausible hypotheses that I might have missed elsewhere - then I will continue to chase down the details with multiple opinions etc. What I was extraordinarily impressed by is their thoroughness. Most people who go there are. That is mainly what Mayo is about - thoroughness and competence in basic procedures and quick referrals across mutiple disciplines. Sad to say, that is missing in a lot of the day-to-day practise of medicine in America. It is not the end-all and be-all. I know that that is what some people think Mayo offers. They are wrong of course. But if I am sick and not sure why, I would go to Mayo in a heartbeat. I mainly have recommended Mayo to people who might have undetected intermal medicine issues. I would not go there if I knew exactly what I was looking for - for sinus surgery, for example. I would go to a specialized surgical place such as U.Penn. for that. >>Don, >> What are you basing this on? I thought I read in one of your posts [quoted text clipped - 6 lines] > In general, just want plausible hypotheses that I might have missed elsewhere > - then I will continue to chase down the details with multiple opinions etc. So, did your visit there resolve your sinusitis, or lead directly to its resolution? Susan Don, I really don't think we're in as much disagreement as you imply. I am not saying that there aren't excellent physicians at Mayo, but as Kathy's post clearly related, experiences vary. I have gone up to Mass Eye and Ear in Boston, a highly rated hospital, and depending on which physician I dealt with, I have gotten two physicians who gave our family and myself superb care and one who should be disciplined at the very least--his care harmed me profoundly. The excellent physicians both admitted that they didn't know everything (yet truly were national experts) and worked with us. The head of head and neck surgery gave us his home number when my husband had complications from parotid surgery and the resident coverage was inadequate--he listened to us and tried a novel approach to a salivary abscess--one I had heard from my mother, who's friend had problems after a face lift. He thought it was "brilliant"--a scop patch--and it worked. My otologist is amazing. The world expert who did my sinus surgery is dangerous. He won't admit when there are problems--he actually can not acknowlege it. He left me with a bone infection and REFUSED to see me back, although his coverage recommended it. Same institution, huge quality variations. So, it's not the institution, it's the individual physicians within the institution. Kathy wrote an excellent post that made that very clear. There are wonderful physicians who practice in communities. Mayo Clinic is not THE answer, although it's multi-disciplinary approach is a great idea, and generally under-utilized in other settings. Judy > x-no-archive: yes > [quoted text clipped - 13 lines] > > Susan Kathy, Fair enough. If going to Mayo or anywhere else I still would (and did) carefully research and choose among individual physicians. Don >Don, > I really don't think we're in as much disagreement as you imply. I am [quoted text clipped - 40 lines] >> >> Susan > Kathy, > [quoted text clipped - 4 lines] > > Don I was trying to be fair to Mayo in my post. I started my saga at Mayo with Dr. Guaderas who got me on the right track and have ended up having a doctor originally from Mayo finally acknowledge the problem and do my last surgery. It's just a shame that it's taken me 9 years of suffering and many incompetent ENTS, including one from Mayo, to get to this point. I doubt my story will end here. I had another nasty gram - bacterium called Klesbeilla cultured out from mucus I had sent my PC doctor at the end of June, 3 weeks before my surgery, and I called several times to get the report before I left, but noone called me back. I went to the office after I got back to get the report and they had faxed it to Dr. Sherris at the beginning of August. This bacterium also cultured out at surgery. The antibiotic that I was on after surgery was not the best one for it, so it has gotten out of hand and I'm now having to treat it. Neither doctor had told me about it. If I had had the report before surgery, I might have been put on the right antibitotic and have save dsome more suffering. So, the saga never ends. The patients have to be their own advocate and keep abreast of everything including their medical records, and like you said do a lot of research. Again, we are all affected by this differently, and I agree that it takes work on the part of the individual to see where their symptoms best fit. Then you have to find the right doctor to really listen to you. Sometimes it seems like an impossible task. Kathyw Kathy, It does seem like an impossible task: especially when you don't feel well. I remember when I called the lab for my culture: I pretended to be from my ENT's office and they faxed it right over---I just knew if I waited for the results, it could slip through the cracks. They actually faxed it to my husband's office fax, and he read the multi-resistant pseudomonas report to me over the phone. And then I called my ENT who hadn't gotten the result yet... It's exhausting. I really hope you start to feel better. I find that it's hard to stop being angry at physicians who've caused me or my family harm via their actions. I've never sued anyone or made a complaint to a board of licensure, but I did call hospital administration about a pulmonologist in Boston who mistreated my daughter. He never called her with her very abnormal lab reports: he scheduled a follow up 3 months later and was going to review them at that time. He did her pulmonary testing wrong: and there are national standards. Her allergist stepped in an re-did the pulmonary tests (the guy in Boston told her she "didn't have asthma"--she was in the ER twice--the correctly performed test showed very reactive airways.) She was living in a very moldy dorm room and had a constant sinus infection, and her labs revealed a significant immunodeficiency: it had a huge impact on how she needs to be treated medically. He drew the labs in Sept and wasn't going to share them until December. When she called, he told her she "had no IgA but there was nothing to do about it". No IgA is a medial alert bracelet (you can die if you get the wrong transfusion), some IgA is a tendency to get bacterial respiratory infections. Again, our allergist had to call up to Boston to straighten it out. Finally, she just switched her care back to Providence. When the Boston hospital reviewed the situation with the pulmonologist, he reviewed it, and said "he would do nothing different." I was ready to complain to the board, but my daughter is 21 and needs to sign a complaint, and she doesn't want to---her fiance is an intern and could run into that doctor. So, as you can see, I'm still mad, and it's infuriating that your culture reports didn't get sent and acted on in a timely manner. You're right we do have to advocate for ourselves, and follow up on everything, and it is exhausting. One final comment, after I got the pseudomonas bone infection, I was advised to put a little vinegar in my irrigation solution to discourage it. (We prescribe acetic acid--vinegar--for swimmer's ear and it's usually pseudomonas--a gram negative bacteria.) I use a tsp/quart. More than that is way too irritating. It's helped me. I did find a medical reference at the time which led me to do it, and my ENT concurred. Judy > > Kathy, > > [quoted text clipped - 30 lines] > > Kathyw >So, did your visit there resolve your sinusitis, or lead directly to its >resolution? It did help indirectly but I am not recommending it just on that basis. > It did help indirectly but I am not recommending it just on that basis. How did it contribute to your treatment or resolution of sinus symptoms, if that's not too snoopy? I guess I'm always looking for the biggest bang, in terms of outcome, for my medical buck. Being impressed by thoroughness while still having no new plan that leads to resolution of a condition wouldn't meet my criteria. I guess I'm hoping to find that all that thoroughness led to successful treatment direction/plan to cure your sinusitis. Susan |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.