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Medical Forum / Diseases and Disorders / Sinusitis / August 2005Shocked by ENT report
After surviving a winter of "hell" with the worst sinus pain I have ever had and being told by an ENT in my area that nothing was wrong with my sinuses and an ID doctor who listened to the ENT and refused to treat me any longer, (even with positive cultures for blastomyces and stenotrophomonas) then having to drive 6 hours from my home to find an ID doctor to treat me with IV antibiotics and antifungals and not getting a lot better, then Ketek with some relief, but all coming back when I went off, I visited an ENT at a large sinus center near my area. (I believe that's the longest sentence that I've ever written.) He looked at my sinuses with the endoscope and said that they looked good, but had me to get a CT scan anyway. I had him look at the one that I had a couple of years ago from National Jewish that showed reactive bone formation. When he came back in, I expected him to say everything is great and there is nothing wrong, but boy was I shocked. The first thing that he said was tht my sinuses are condemned and I have something like COPD of the sinuses. He said that bacteria were probably trapped in the bone and that there is no cure. Surgery won't help. I'm not sure if the new CT scan showed this or not. I think it was more detailed than the ones I had at my home (results of those said limited.) I was too shocked to ask. He said that we could control it. I am starting nebulized pulmocort (Sinuneb) followed by amphotericin B rinse followed by nebulized tobramycin, except I'm trying to hold off on the tobi to see if the other treatments help first. I've been pretty depressed about this diagnosis, yet relieved that someone is taking me seriously a little closer to home (It's a 2 hour drive instead of the six I was making previously.) This also makes me wonder why Dr. Kennedy looked at my Ct scan and said that I wasn't a candidate for surgery at this time, unless he meant surgery wouldn't help. I never had any direct contact with him. Anyway, I just needed to vent. Kathyw Wow! Thats scary. I'm so sorry to hear of your dianosis. It really makes me worry that I too someday will be suprised like you. > After surviving a winter of "hell" with the worst sinus pain I have > ever had and being told by an ENT in my area that nothing was wrong [quoted text clipped - 30 lines] > > Kathyw On 8/18/05 9:34 AM, in article 1124382874.808296.292600@g47g2000cwa.googlegroups.com, "Dball63" <dball63@yahoo.com> wrote: > Wow! Thats scary. I'm so sorry to hear of your dianosis. It really > makes me worry that I too someday will be suprised like you. [quoted text clipped - 33 lines] >> >> Kathyw Some physicians use Hyperbaric oxygen for bony infection. You might ask about this. There is a Hyperbaric Oxygen medical society and they can give you references. Thanks; you had mentioned this before. I mentioned it to my PC doctor and he said it was a good idea but that is as far as it got. I didn't even think to mention it to the ENT. There is a hyperbaric oxygen center in my county. I'll check into it further. Kathyw Wow! Thats scary. I'm so sorry to hear of your dianosis. It really makes me worry that I too someday will be suprised like you. David Sacramento, CA > After surviving a winter of "hell" with the worst sinus pain I have > ever had and being told by an ENT in my area that nothing was wrong [quoted text clipped - 30 lines] > > Kathyw >After surviving a winter of "hell" with the worst sinus pain I have >ever had and being told by an ENT in my area that nothing was wrong [quoted text clipped - 13 lines] >said was tht my sinuses are condemned and I have something like COPD of >the sinuses. Well there is no such thing. Maybe you mean pansinusitis. > He said that bacteria were probably trapped in the bone >and that there is no cure. Surgery won't help. I'm not sure if the [quoted text clipped - 9 lines] >at my Ct scan and said that I wasn't a candidate for surgery at this >time, unless he meant surgery wouldn't help. That is exactly what he was evaluating - whether he would want to do surgery in this case. You can hardly expect him to consider other options without even seeing you. In fact, I think that the reason he looks at CT scans in advance for screening is precisely to avoid getting involved with non-surgical treatments and diagnosis. That is too bad that you are having such a hard time. I would look for further opinions........ Don, What are you talking about when you say there is no such thing? "The bacteria trapped in the bone?" I'm pretty sure that is what he said. He also mentioned osteitis. The diagnosis sheet says pansinusitis. Why hasn't this showed up on the 2 CT scans I had earlier this year? Shouldn't something have show on a limited scan? I've had the same symtpoms off and on since last August. How would an endoscopy look normal if it was pansinusitis? There was no mention from Dr. Kennedy's office of him wanting to see me. I called the nurse and she is the one that said I wasn't a candidate for surgery at this time. I would have went there in a heartbeat if I thought anyone would help. They returned my CT scans and notes that I had sent without any comment at all. So I'm not "knocking" Dr. Kennedy. Most doctors wouldn't even consider looking at a scan for free, but I would have liked to have had an explanation or a referral to someone else. What other options are there. I've already been on IVs. >Don, > What are you talking about when you say there is no such thing? I was referring to the term "COPD of the sinuses." I do not think such terminology takes you very far.... Certainly I am not doubting that you have a serious problem... >"The bacteria trapped in the bone?" I'm pretty sure that is what he >said. He also mentioned osteitis. Could those remarks have been casual conjecture rather than making a definite diagnosis? >The diagnosis sheet says >pansinusitis. That was my guess as to what was meant by "COPD of the sinuses". All pansinusitis means is sinusitis in all sinuses. I have had that diagnosis too. It is just a shorthand to avoid listing all of the sinuses. > Why hasn't this showed up on the 2 CT scans I had >earlier this year? Shouldn't something have show on a limited scan? >I've had the same symtpoms off and on since last August. How would an >endoscopy look normal if it was pansinusitis? Were the openings of the sinuses still wide enugh following prior surgery that they could get into the sinuses with the scope? They are only wide enough following surgery and even then they may narrow with time. If not, they would not have been able to see in. The reports by the radiologists are really just a starting point, The CT scans need to be interpreted in conjunction with lots of other things to arrive at a diagnosis. Still, I do agree with you that it does sound odd that the reports and diagnoses are not agreeing with each other. > Most doctors wouldn't even consider looking at >a scan for free, but I would have liked to have had an explanation or a >referral to someone else. Perhaps any comment at all could open him up to liability exposure where he has not seen the person...... >What other options are there. I've already been on IVs. I would look for more opinions. I had thought that the approach Dr. Kennedy takes, or removing ethmoid bone to remove infection in the bone might help. Actually, perhaps it still might, but I guess Dr. Kennedy is not going to be the one to do it. I guess you could call back his secretary and ask if it might be worth seeing someone else at U. Penn. But they are very focused on surgery there. If it appears that you are still trying to narrow down the diagnosis, I would look elsewhere. Maybe Mayo. >>Don, >> What are you talking about when you say there is no such thing? [quoted text clipped - 48 lines] > I had thought that the approach Dr. Kennedy takes, or removing ethmoid bone to > remove infection in the bone might help. My ENT has had a few patients where the infection has spread beyond the ethmoid bone, spreading deeper and further into the skull. He puts them on long-term IV antibiotic, but he has found that treatment often doesn't result in a cure.  SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. > Don, > What are you talking about when you say there is no such thing? [quoted text clipped - 4 lines] > I've had the same symtpoms off and on since last August. How would an > endoscopy look normal if it was pansinusitis? Could I please interject my $0.02 here? I've got a great ENT and he and I have learned a few things: First, my ENT has had a couple of patients whose sinusitis progressed into osteomyelitis (bone infection), which is what I think your doctor meant. Long-term intravenous (IV) antibiotics are the current treatment, but in my ENT's experience, it often doesn't result in a complete cure. Secondly, CT scans have about a 5-10% rate of false negatives--failing to show disease that is there. With each of the two surgeries I have had, the CT scan taken less than a month before did not match what my surgeon found in my sinuses when he operated on me. He told me he had the CT scan films right in the operating room and they didn't match. If you have chronic infection, it can flare up within weeks and so a CT scan taken only a few weeks ago is already obsolete. > What other options are there. I've already been on IVs. If the infection is just in the bony partitions of your ethmoid sinuses, then of course those can be removed surgically. If the infection has progressed deep into the bone of your skull, and as my ENT said, IV often doesn't work, then there may no other options. You may be stuck with it. But you'll still have to be on IVs periodically, to prevent the infection absessing into your brain (which could be fatal). SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. Oh, that sounds great. I got the idea that the bacteria are trapped in the bone. He said it was probably from the sinus surgery I had several years ago which was a partial ethmoidectomy, but I'm not so sure. I had the same symptoms before surgery, but not as bad and got better for a while. I had a major sinus infection many years ago that I don't think ever completely cleared up. Then I worked in an extremely moldy building for years. If there were actual infection in the bone wouldn't that show up on CT scan? As I said I don't know what this latest CT scan showed, so I don't know if he was basing his opinion of the one from NJ that showed the reactive bone formation or the new one. I have another appointment in a month (if I make it that long) and I will ask some of these questions. I may also get a copy of this CT scan if I'm not doing better by then and try to find someone else at UPenn to look at it. Thanks for the input. > Oh, that sounds great. I got the idea that the bacteria are trapped in > the bone. He said it was probably from the sinus surgery I had several [quoted text clipped - 4 lines] > building for years. If there were actual infection in the bone > wouldn't that show up on CT scan? That's what bone scans are for. Bone scans can reveal all sorts of abnormalities, including infected area and malignancies. > Thanks for the input. I wish I had better news for you. Osteomyelitis (chronic bone infection) is a real son of a bitch to cure. Obviously they can't surgically remove large parts of your skull. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. It would be nice if they could just remove it and replace it with plastic or something. <snip> > Anyway, I just needed to vent. > > Kathyw Welcome to the club. Thanks, but I've been a member of the club for quite some time now. I would really like to drop out, but I guess I'm stuck like a lot of others for life.
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