Even as a child, I had problems with nasal congestion and obstruction. These were not brought to the attention of any physician until 1970, when I was 23 years old. While having my eyes checked, I mentioned the nasal congestion to a small town EENT. He found my nose was full of polyps. He removed the polyps from the nose (without entering the sinuses) in a messy and uncomfortable office procedure. My breathing improved for a while, but not for long. For the next twenty years I just lived with it, using topical nasal decongestants for occasional relief. Not being able to breath through the nose is very annoying. During this time, I was, if not anosmic, certainly hyposmic, but had never heard of such a thing.
After many years of being anosmic and rarely ever being able to breathe through my nose (except for a short while after using a topical decongestant), I finally went to see a specialist. I was just sick and tired of eating rotten food that I could not smell, burning up the toaster and frying pans et cetera, and not being able to smell danger (like propane leaks or smoke from a fire), that I decided I needed to do something drastic about my problem. By this time I had forgotten how nice it is to be able to smell pleasant things and properly to appreciate the flavors of foods.
Well, the initial, tentative diagnosis for the cause of my anosmia was a tumor in the cribriform area of the brain. As you can imagine, the week between that tentative diagnosis and getting a brain scan done was one of great anxiety. I learned that the prognosis for persons with such tumors is poor, and I started putting all my papers in order, if you know what I mean.
After the brain scan, I carried the images over to my otorhinolaryngologist's office. As luck would have it, they put me in a little room right next to the room where the images are read. I saw the doc go into that room and then holler out, "hey, guys, come and look at this!" My heart is pounding. What does he see that is so remarkable that he wants all his colleagues to see it too? Then I hear "I sent this guy over for a brain scan, suspecting a tumor in the cribriform area, and all he has is the worst case of sinusitis I have ever seen." My doc came over to tell me the good news. Then he tapped his finger on my forehead and asked if that hurt. When I said no, he suggested that he was surprised that I did not have excruciating pain, given that my sinuses were full of what we now know to be polyps. He has since advised that it is changes in the pressure inside the sinuses, such as that experienced with rapid descent from high altitude, that is most likely to cause pain, and I had these polyps up there so long after gradual growth that they produced no pain. You might wonder why a brain scan was done rather than just a routine sinus CAT scan.
After having a second opinion I had the surgery. This was before the days when they did it endoscopically. They went up my nose and cut dime-sized holes into my sinuses there and did the same above my upper, left teeth. For days after the surgery I looked like I had been hit with a Mack truck. My face was all bruised and my nose was the size of a lemon. My nose was packed rather tightly. There were teflon splints nailed into both sides of my septum, as correction of a deviated septum was done while cleaning out the sinuses. The worst part of the recovery was fearing that I was going to choke to death on the seemingly large amounts of blood that I was swallowing. I was afraid to go to sleep. This led me to stop taking the oxycodone that had been prescribed for pain. I took ibuprofen instead, which was a mistake, since that made the bleeding worse. On my later surgeries I took steps to reduce the bleeding -- before the surgery I stopped taking any substances that promote bleeding (such as vitamin E, garlic, ginseng, and others) and I started taking vitamin K.
It was only a few days until I had the packing taken out of my nose, but it seemed like an eternity. The splints were cutting into my nose and hurting. I had heard that taking the packing out can be painful, and I feared that taking the nails out of my septum would be painful too. Both fears were unfounded. Taking the packing out felt good to me, and what a rush it was to be able to breathe through wide-open nostrils! The doc squired a little cocaine solution on my septum and reached for an instrument that looked like needle-nosed pliars. The nails came out of my septum with no pain.
The surgery did successfully restore my sense of smell for about a year and a half after which time my ability to smell things gradually declined, eventually to the point of complete anosmia. Not prepared to do the surgery again, and not knowing what else to do, I remained anosmic until I discovered that steroids restore my sense of smell.
Well, I had my annual visit to my nose doc. Here are the results:
After a hard winter full of nasal congestion, nose colds, a runny and itchy nose, and sneezing attacks, I made an appointment with my nose doctor. Shortly after I made the appointment my symptoms cleared up for the first time in months. Maybe it was the steroid spray, which I had started using again, who knows-the air has been full of tree pollens, so if I reacted to them I should have been miserable. In any case, I saw him today. He found no sign of any return of the polyps. He said that the steroid spray might help me recover some of my sense of smell. He said that allergy testing might be a good idea, but since I currently am doing OK, why bother right now. He said that rather than coming in for annual checkups now I should just come in when my nose problems flare up again. I told him maybe I should just make a spurious appointment with him whenever my nose gets really bad, because just the act of making an appointment seems to clear it up.
I got a "nose cold" around Thanksgiving of 1997. It never let up, and after new year's the discharge became thick, yellow, and copious. I saw my family doctor, who prescribed Biaxin, 500 mg twice a day for 10 days. The day I started taking this drug I nearly passed out once when blowing my nose at the office. The drug upset my bowels to the point of making my anus bleed, but I took all 20. The copious thick yellow flow abated, but I remained congested. The left side of the nose was worse than the right, sometimes feeling like I had a flap that moved with breathing, closing the passage.
I have been totally anosmic for at least a year now, don't even have any rare occasions when I can smell. I've been taking Flonase, prescribed by my family doctor, which usually keeps me breathing OK, but I'm not convinced it has much more than placebo value, and it does nothing to restore my sense of smell.
On 21. Feb. 1998 I started taking 10 mg prednisone every morning (left over from the time (Dec. 94) I inhaled poison ivy -- I stopped taking it then (in much larger doses) because it jacked my blood pressure way up). My family doctor had mentioned using prednisone to "dry up" my nose when I had that infection earlier. Four days after starting the prednisone I had one episode of recovery of olfaction late in the afternoon. One week after (28. Feb. 98) I started having good olfaction every late afternoon and evening. Later yet I had good olfaction all day. At one point I got a big bunch of off-white thick mucus or whatever from my nose -- after that there was little discharge. On 6. March I reduced the dose to 5 mg/day, and on 13. March to 2.5 mg/day. On 19. March I stopped taking prednisone. By the end of March my olfaction was waning, and by 10. April it was gone again -- I couldn't even detect the scent of a stink bug that had the rest of the family running from my hand.
I've had a lot of trouble with both congestion and excess production of mucus this past several months. Last month I got a 'nose cold' that lasted 3 weeks or more (depending on whether or not I'm considered still to have it). I produced large amounts of yellow mucus (more on the left side than the right, and not as much or as thick as this past Winter -- I'd blow about a teaspoon of mucus from the left side when it would open up, usually after several hours of sleep or at morning's rise). The production of mucus has abated somewhat now, but I still get a lot of it dripping down my throat, and I remain often congested and always anosmic. I went in to see Dr. Camnitz about this today. I did not like what he had to tell me. I had expected to discuss use of allergy testing, maybe a steroid injection, or even minor (office) surgery to relieve my symptoms, but he told me that my polyps have returned, especially on the left side. He says that surgery to remove them is almost certainly necessary, but that it is now done a much better way, endoscopically, with the surgical instrument in a tube stuffed up the nose, and the area shown on a video monitor to guide the surgery visually, rather than by feel, as was done the last time. He says that the new procedure causes less bleeding than the old, and is more likely to provide a longer lasting cure. No new holes would need be cut in my skull, he could use those cut previously, but he might have to cut some of the thin "honeycomb" bones in the sinus itself. He will know better what is needed after he sees the CT scan that I am scheduled to have done day after tomorrow. The surgery is done at a surgical facility out by the hospital, and it is done under general anesthesia. He won't use local anesthetic after the nose has already been subject to one surgery, as it is more difficult to numb then, and if the patient were to jerk around, brain damage could result. He told me that it was a good sign that the prednisone I took in March caused a recovery of my sense of smell (while I was taking it) -- he says that the prednisone shrunk the polyps enough to allow air flow to the olfactory receptor, which would not have worked if I had damage to the receptor area itself.
Had my CT scan today. The good news is that it is fortunate that I went in to have it done. The bad news is that I have sinus disease in 7.5 of my 8 sinuses (my ethmoid, sphenoid, and maxillary sinuses are all full, as is one of my frontal sinuses, with the other frontal sinus being the only sinus that has any air in it), and the disease is eroding the bones that separate my sinuses from my brain. As I don't like the idea of having my brains seep out through my nose, or infections from my sinuses go up into my brain, I've scheduled surgery for the 22nd of July, 10:30 or 11 in the morning. My daughter, Lotus, will drive me back after the surgery.
Of course, this surgery is delicate, since it is done right next to the brain, and especially delicate because the disease has already thinned my bones there. Dr. Camnitz mentioned that one potential complication is the leakage of cerebrospinal fluid into the sinuses if the barrier between sinuses and brain is breached. He said that he has operated on persons with thinned bones like mine, and has never had to deal with this complication, but that two of his colleagues have. If such a problem were to arise, it would be apparent at the time that the packing is removed from my nose (two days after the surgery). It would require a second endoscopic procedure, with the leak being patched up with skin and fat taken from elsewhere.
The surgery will cost several grand. His staff is contacting my insurance administrators and will contact me if any prior approval procedures are required. Last time I had this sort of surgery, prior approval and a second surgical opinion were required, because I also had a septoplasty done, which is not covered if done only for cosmetic reasons. Last time he entered only three sinuses. This time he expects to enter 6 to 8 sinuses. The surgery will be done at the same surgical center where I had my last surgery done. That center is now owned by the hospital.
I asked about alternatives to the surgery. I was told that treatment with antibiotics and steroids might relieve my symptoms, but that the disease would persist and would cause the same symptoms shortly after such treatment was stopped. I also asked what can be done this time to make it less likely that the disease will return again. I was told that allergy testing after the surgery would be a good idea.
They gave me a broad spectrum antibiotic (Ceftin, a cephalosporin) to take the ten days prior to surgery and a prescription for steroids (prednisone, 30 mg the first day then tapered off) to take the six days prior to surgery. I am not to have any food or fluids after midnight the night before surgery, and I will not take my usual medications the day of surgery.
On the 17th of July I'll go in to see one of the surgeon's assistants (Vanessa) to pick up some papers and then it is on to Physicians East (at the Quadrangle, where Sol's dermatologist is) for a chest X-ray, an EKG, and some bloodwork, and then to the surgical center to make arrangements with them (last time they wanted payment prior to admission).
I had my surgery on Wednesday the 22nd of July. The recovery was disgusting (bleeding and dazed) but not painful. I had the packing removed on Friday the 24th. I had no visible bruising with the surgery this time. Dr. Camnitz said that he would not be surprised if the bleeding continued throughout the weekend. He was in Vermont the following week.
Bleeding on the right side continued, off and on, since the surgery, through Monday the 3rd of August, but not in very large amounts. Some days there was very little bleeding, some days more. Some mornings, like Monday the 3rd, I would awaken and cough up globs of old blood, burgundy colored, and then get several more globs of old blood from the right side when I irrigated with saline (1/4 tsp. in 1/2 cup water). Then I get would get more blood during the day when I cleared my upper throat. I estimated that the total bleeding was just one to four teaspoons a day, but I don't know how much I swallowed, and the blood mixing with mucus makes it difficult to estimate the quantity of blood. Other days there was very little bleeding.
I was going to call Tuesday the 4th and ask about the continued bleeding, but that morning I got almost no blood out with the irrigation and none later that day or on Wednesday. I have been congested on the right side. I do still tire easily and feel light-headed sometimes. I did feel a little jab now and then on the right side below or above the eye, but no pain of any consequence.
Thursday evening and Friday (today) I have been getting a little old blood when I clear my throat-the color of saliva mixed with milk chocolate. I have a dull pain on the right at eyebrow level.
I called Vanessa today to ask if the bleeding and dull pain constitute anything of which Dr. Camnitz should be aware. She spoke with him and called me back, reporting that all sounds normal to him, not to worry. Next Friday he will decongest me and then go into my ethmoid sinuses, cleaning up in there.
When I woke up this morning I noticed a swelling on the medial side of my right eyebrow. It was about the size of a thumbprint (1 inch vertical and half an inch horizontal), raised about 2 mm, with no pain or discoloration. I do normally have "horns" on the medial sides of both eyebrows, but the right one was noticeably larger this morning. When I went in to Pitt Family for bloodwork this morning, the nurse, Judy, said I ought to advise Camnitz about it just in case. She has had sinus surgery (by him and Albernaz) three times in the last eight years and she still has problems with congestion and sinus infections! It is possible that I hit my head on the corner of my night table while sleeping (but one would think that I would remember that) or that an insect or spider bit me there. I put some steroid ointment on it. During the day it seems not to have gotten any larger, maybe a bit smaller. I spoke to Vanessa about it this afternoon. She said it is not likely to be associated with my surgery this far (three weeks) from the surgery. She called back a bit later, after speaking with Camnitz. He says it is probably just air that gets trapped during the surgery, not to worry. In any case, I'll be seeing Camnitz day after tomorrow.
I saw my surgeon, Paul Camnitz today. He looked in my sinuses and said they looked fine, the procedure was no big deal. I am scheduled to go back on the 31st of August. At that time they will do some allergy testing, and Camnitz will check out my nose again. I was congested this morning to the point of being anosmic. I have had mucus but no bleeding lately. They decongested me with a mixture of lidocaine and phenylephrine this time, not cocaine. Camnitz said that if the mucus production is still bad at my next visit, then we will talk about debridement of the wound, an office procedure. My right "horn" isn't swollen any more. Camnitz said the horns are just bone, just the way I'm made. He said that I did not feel sinus pain from the polyps because they grew so slowly -- it is rapid expansion or contraction which leads to pain. He said that there is a chance that the polyps could recur, that continued use of Flonase is probably the best thing I can do to prevent or delay their return. I can resume my use of vitamin E now, as the bleeding has stopped. He found nothing notable in terms of unusual architecture of my sinuses or pathology of the tissue removed.
I saw Paul Camnitz this afternoon. He decongested and scoped my nose. He found some polyps high in the nasal cavity, but without a sinus CT scan he can't tell whether they are just intranasal or whether they originate from within the sinuses. At first he advised that I should have the CT only if I would take the treatment were the sinuses shown to be involved, but then he asked about my insurance, and after learning that I had already met my maximum copayment for this fiscal year, he suggested that I should get the CT (at no expense to me) and then decide. That was my thinking too, so we have scheduled a sinus CT at month's end to see what the situation is. If the polyps are just intranasal, they could be removed by an office procedure. If they are in the sinuses, then I need decide whether the potential benefit is worth the grief involved with going through the sinus surgery again. He suggested that the procedure would be much easier than that I had in July of last year, but he wouldn't predict whether the recovery would be any less unpleasant. I advised him of the relationship between prednisone and my sense of smell and my doubts that the polyps are the sole source of my anosmia -- my sense of smell was restored for only a week or two after the surgery, and that recovery might have been due to the presurgical prednisone treatment, not the removal of the polyps. He then suggested that the problem may be that inflammation is interfering with olfactory neural function, in which case removing polyps would not be expected to help. After I bring him my CT images, he plans to shove decongesting materials way up my nose and leave them there for half an hour, followed by a test of my sense of smell at that point. If that procedure restores my sense of smell, then the neural explanation would be favored. I do not now know what possibilities there exist for treatment if that is the case.
My surgery this morning went well. The polyps were not as bad as had been feared. Apparently much of what showed on the X-rays was material trapped in the sinuses because of scaring from the surgery I had done last July -- the scar tissues grew together across channels in my sinuses. My surgeon told me that he would follow me more closely this time to be sure that that does not happen again. I assume that means some debridement of the scar tissue, which I hope would just be an in-office procedure.
They called me in early this morning, as there was a cancellation, so I was in at 0800 and out about 1230. There has not been near as much bleeding this time as last, and the pain is not bad -- I've been taking reduced doses of the oxycodone so far. Of course, I am still groggy.
This time (unlike last time) the surgical center insurance people did their job properly, not requiring a large payment up front (I'm covered 100%). I've learned how to deal with those folks, and they were actually cordial this time. The nursing staff was great. I go back Friday morning to have the packing out of my nose. In the interim, it is not pleasant, but nowhere near as bad as last time. Last time I was ready to blow my head off during recovery!
Had my packing removed this morning. The nurse cold not find the packing on the left side, but my surgeon did. He packed me loose and high this time, so I was able to breathe through my left nostril at all times. He is going to follow me "aggressively" during my healing this time to be sure the wounds do not close improperly. He said that on the left side the wound had merged with my turbinates. There was not much in the way of polyps, but what there was was worse on the right side. He will check me endoscopically several times (in the office), doing whatever is necessary to keep the healing proper. I am tapering off of the prednisone now. I can smell well now but the intensity of my sense of smell waxes and wanes. Today I was able to smell my new car for the first time since I got it in October. I had forgotten that new cars have that smell.
It is remarkable how much better my recovery has been this time compared to last. Last time I bled a lot, for days, and felt miserable for weeks. Right now I feel great, and there is little bleeding. My surgeon opined that the heavier presurgical treatment with prednisone may have contributed to the surgery not being as difficult this time.
I am continuing with my allergy shots, and I go back to see my surgeon again already next Friday.
My recovery is still going remarkably well. I am not taking the pain pills anymore. There is some nasal bleeding, but nothing like last time. I am a bit tired, but nothing like last time. I have reduced the prednisone to 15 mg day and will go to 10 mg day after tomorrow. I have been busy sticking my nose into everything since I can smell. I hope that the sense of smell stays this time after I stop the prednisone. I am getting allergy shots twice a week now.
I saw my surgeon this morning. He vacuumed out my nose with a metal suction tube. He said that a synechia (an adhesion) had already formed on the left side between the middle turbinate and the lateral wall, blocking the sinuses. He broke that (was a bit painful) and told me to come back Tuesday for an endoscopic procedure (in the office). He said he might have to insert a sponge for a few days to prevent the adhesion from reforming. At one point, years ago, he mentioned reducing the size of the turbinates through an office procedure. I suppose that might be another option.
We spoke about prednisone. He told me that I can use up what I have left at 10 mg a day, cutting to 5 mg a day the last couple of days. I can resume using the nasal steroid spray (Flonase) now. I mentioned that I had corresponded with Dan Kurtz, at the SUNY Syracuse Smell & Taste Disorder Clinic (I met him at the Anosmia Resource Center web page). Dan suggested that the prednisone might work by relieving pressure around the filaments of the olfactory nerve as they pass through the cribriform plate. My surgeon agreed that this was possible, or that the pressure on neural tissue might be elsewhere, but he still favors the hypothesis that my anosmia is caused by the airflow to the receptor surface being blocked. He may favor that hypothesis because there is something he can do about that. He opined that there was no good way to test the neural pressure hypothesis and no good therapy for it. I mentioned that I have corresponded with another chap (in Colorado, also met at the Anosmia Resource Center) who has had repeated surgeries but remains anosmic unless on prednisone. That chap has his doctor give him prednisone 2 or 3 times a year (such as during the holidays) just to get a "vacation" from anosmia. My surgeon thought that a reasonable thing to do, but warned that one would not want to do it more often than that.
The synechia was removed again on the 23rd of March, but it had not reformed again by my visit on the 30th of March, so my next visit is not until the 13th of April.
Since the synechia did not reform during the two weeks between visits, my surgeon told me, on the 13th of April, that I did not need to return for additional debridement. My sense of smell remained good through April, May, and June, but started waning in July. By the 1st of August I was anosmic again. I have had some problems with congestion, with thick, colored mucus, but breathing has not been a problem. My surgeon told me that discolored mucus is not a sign of infection, but a sign that the mucus has been "stagnant." Every once and a while my sense of smell will return briefly -- for example, it returned for a short while after a couple of hours of vigorous work in the August heat, perhaps because my nose opened up enough to let the incoming air stream reach my olfactory receptor surface -- but most of the time I have no sense of smell. While it was great to have my sense of smell restored for four months, I am not prepared to go through the surgery again soon. I shall wait until the polyps are so bad that they cause problems breathing (or other serious problems).
I went to see my ENT doctor today. He told me that there is no visible sign of my polyps having returned, but that it is possible that they have returned within the sinuses but have not pooched out into the nose yet. He said that there were three possible causes for my current anosmia: 1. polyps in the sinuses which can't be seen in the nose but nonetheless disrupt the flow of air to the olfactory surface, 2. scarring from the last surgery, like after my earlier surgery, but such scarring would not likely occur four months after the surgery, but rather sooner, and 3. allergy to something seasonal for which my allergy shots are not adequate. He recommended that I continue my allergy shots weekly and gave me some Claritin antihistamine to try. I asked him about aspirin desensitization therapy, a therapy which is recommended by some for folks with polyps, asthma, and documented sensitivity to aspirin and salicylates in general (which are found in all sorts of things, including many foods). He is aware of the therapy, but is not convinced that it is of any value. He recommends waiting and watching to see if it proves to be of any value to those who are pioneering the therapy. I have had some sinus paid on the right side recently, which is unusual for me, but it is not intense.
I visited my ENT specialist, Dr. Paul Camnitz, on the 6th of June, 2000, to ask him several questions about the condition of my nose and sinuses. Here is a summary of my visit with this excellent physician.
I noted that we moved from our very old house to a relatively new house (2 years old) in December of 1999. In January of 2000 my sense of smell started returning, and it was quite good in February, but then I lost it again in March. Why the return, why the loss again? He found this very interesting, but was not able to offer an explanation.
In April my mother, sister, and niece came to visit, one with a sinus infection and the other two developing pneumonia. I was concerned about being exposed to bacterial pathogens, but only got a "nose cold," with lots of thick, discolored mucus. I irrigate with saline twice a day to remove some of this disgusting gunk. I still have constant "post nasal drip," which accumulates in my throat and interferes with my speech. I videotaped one of my classes last week (I compete for teaching awards, and have won several, as has Dr. Camnitz). When I watched the tape I realized how very frequently I have been clearing my throat and how disruptive that is to the listener. I also noticed that I frequently give "the allergic salute" - rubbing my nose without even realizing I am doing it.
Dr. Camnitz decongested me and scoped my nose. He said that there was no sign of infection, but there was some sign of polyp growth, worse on the right side than on the left. Curiously, I have more problems with congestion with the left side. He explained to me that surgery would relief the symptoms I am having, but probably not for long. We decided that the best strategy for now is to try various combinations of treatments designed to relieve symptoms and/or retard the growth of polyps, until the symptoms get so bad that surgery is worth the costs of surgery (and not just the financial costs). I shall continue allergy shots, attempts to avoid allergens, and use of steroid nasal spray.
One of the delightful things about being a patient of Dr. Camnitz is that he is more than willing to talk with his patients about their treatment. He knows to expect that I shall come in with a word-processed list of questions to ask him and that I shall take notes during our visit. He tells me that he likes his patients to have researched their condition and discuss their treatment with him. He makes it clear that the informed patient is the one who best knows his or her condition and, with the assistance of the physician, makes the final decisions regarding treatment. Not all physicians have such an attitude. I am quite fortunate to have two such physicians caring for me (my general practice physician is exceptional in this way too). I should add that Dr. Camnitz has a delightful manner in the surgical center too, coming by to visit his patients pre-op and reassure them, even though he has a packed schedule.
This past year I have had suggestions from two other ENT specialists, the fathers of two of my students. Fairley Pollock's dad practices in Wilmington. She says he suggested that I give the antihistamine Zyrtec a try. I have not had much, if any, benefit from antihistamines (Claritin and Allegra) in the past, and asked if there is any reason to think that this one might help me. It turns out that Dr. Pollock did an internship with Dr. Camnitz. Dr. Camnitz advised that some anthistamines work well for some people, other antihistamines for other people, so I should give it a try with the samples he provided. I'll wait until the weekend to try, as I've seen one of my colleagues have a nasty reaction to Zyrtec (nausea, dizziness, etc.).
Steve Satterly's dad practices in Wilson. I met him at graduation this year. He mentioned Samter's triad and suggested that I ask Dr. Camnitz about a treatment discussed recently in some Japanese journal. For patients with a history like mine, Dr. Satterly has prescribed one tablet daily of Singulair (a drug used for asthma) and one of Biaxin (an antibiotic I have taken, and which was rough on my gut).
Dr. Camnitz did suggest one additional treatment to try -- an intramuscular injection of Kenalog, a long-lasting synthetic steroid. He said that it might provide some relief for a period as long as 3-5 months. I looked up this drug in the PDR when I got home and discovered that it is the same drug that I use in ointment form for skin rashes.
I asked how common are the sort of problems I have with polyps. He told me he was not sure, but that two of the fifteen patients he had seen today were such patients. Earlier I had chatted with a colleague of mine in the waiting room, and her symptoms sounded a lot like mine: Sinuses full of something, not responding to antibiotics, anosmic. I get the feeling that there are a lot of folks out there with sinus problems like mine.
The injected steroid (Kenalog 40) worked like a charm - in just two days my sense of smell was restored. The second afternoon after the injection my sinuses started draining a lot and my sense of smell started to return. When I irrigated my nose that evening I got a big chunk of nearly solid gunk that felt like it came from high up -- it was about 2 cm long and about 3/4 cm wide and deep, with a consistency like that of soft rubber. I imagine that this plug was preventing my sinuses from draining and blocking the flow of air to my olfactory receptor surface.
My restored sense of smell lasted close to four months. In October it slowly left me. On the 13th of December I had another Kenalog injection, intended to restore my sense of smell for the holidays. My sense of smell did not come back as quickly this time. During the first week after the injection I had only a few moments with olfactory sensation. During the second week I started getting my sense of smell back every afternoon. At first I would get my sense of smell back only around supper time, but then every day the onset of olfactory sensation started a little bit earlier, until I actually had a sense of smell from the time I got up in the morning. I did get a lot of mucus drainage during this time, thick, gray/green, but I did not notice any rubbery plug like last time. I did once pass a chunk of gunk that was semi-solid and about a third the size of that I passed after my first Kenalog injection. My sense of smell does not seem to be as strong as it was after that first Kenalog injection, but it is a whole lot better than being anosmic. I have been congested the last few months, and think that might contribute to my dampened sense of smell. I have started using a different steroid spray (Rhinocort powder instead of Flonase), recommended by one of my correspondents, in hopes of relieving my congestion, keeping my sense of smell, and retarding the growth of polyps. I only take antihistamines (Zyrtec, Claritin, or Allegra) when I can't avoid being surrounded by allergens, and they seem to do little if any good. I do allow myself to use a decongestant, local or systemic, about once a week, but not more often than that -- I have hypertension, and decongestants raise blood pressure. I did spend a lot of time over the holidays beefing up my allergen avoidance measures -- treating carpet and drapes with chemicals designed to deactivate mite dung and retard dust collection, replacing mite barriers on my bed, etc. I am uncertain whether any of this does any good -- in our previous house I removed all carpeting and drapes and that did not seem to help at all, and it made the place look dreary.
That last Kenalog injection's effects came on slowly, but lasted a long time. Just last month my olfaction started getting spotty. It comes and goes now, and I have the feeling that I will soon be anosmic, but I have decided to delay getting another Kenalog injection until I can try some alternative treatments and see if they have any value.
The alternative treatments were not successful, so I got another Kenalog injection on the 17th of October, 2001. Within two weeks this injection fully restored my sense of smell. I kept my sense of smell for 9 months, after which I started using Quercetin to restore my sense of smell for a couple of months before getting another Kenalog injection.
Year 2004 has brought a new challenge for me. I am losing vision in my left eye, due to edema of the optic nerve. I have been having all sorts of blood tests and had a brain scan (CT) last week, but we still do not know what is causing the edema. The vision loss may be permanent, or I may get some or all of it back in a few months. Only time will tell. When I went for the brain scan I did remind the radiologist that I have had three sinus surgeries, and I asked him to let me know what changes there have been in my sinuses since my last CT scan years ago, before my last sinus surgery. There was no sign of tumors in the brain, thankfully. There is thickening of the mucoperiosteum (the normally thin tissue that lines the walls of the sinuses) in all of my sinuses except the right frontal sinus. This is a sign of continuing sinus disease. There may be "air fluid levels" in the left frontal and left maxillary sinuses. An "air fluid level" is the line that is seen on the X-ray at the point where fluid and air meet in a sinus. In other words, there is something other than air partially filling those two sinuses. This is a sign of ongoing sinusitis. It is possible that my sinus disease is contributing to the problems in my left eye (for example, by creating pressure that affects the optic nerve or the supply of blood to the optic nerve), but that is just a wild guess at this point. I was somewhat amused by one comment the radiologist made. He described my right maxillary sinus as "hypoplastic." What that means is that the sinus is "underdeveloped" in the sense that there is too little space for air relative to the amount of bone making up the sinus. Put another way, you cannot honestly call me an airhead, but you can call me a bonehead.
He poked and prodded around in there and sucked out gunk but could not find any polyps (hurrah). He suggested that what my pulmonologist thought was a polyp was just a swollen turbinate. He reviewed my treatments and made the following comments:
On the drive home, I could smell food cooking as I drove past restaurants. I spent some time sniffing everything in the cupboard when I got home. This did not last long, however. Phenylephrine is a short-duration decongestant, and by evening I had returned to a state of anosmia. I am putting my hopes on that Kenalog!
I noted that I have been using oxymetazoline to decongest one nostril in the evening so that I use the nose mask with my CPAP (I can't stand the full mask). He advised that I should not use the oxymetazoline every day -- if I use it for four days, then I need not use it for two days.
The Kenalog worked like a charm, again, restoring my sense of smell, which I had lost a couple of months earlier.
Although I had not lost my sense of smell again, I was congested and afraid that I would lose it again soon, so I got another Kenalog injection just prior to my vacation.
My sense of smell is still good, two and a half years after my last Kenalog injection. I have been stuffy, but not anosmic. I am using Astelin now during the pollen season.
I just got a letter from the Pharmacy Benefit Managers (Medco) hired by my health insurance (North Carolina State Health Plan) saying that they no longer would pay anything towards the purchase of Singulair for me unless my physician requested a review and they granted coverage. This is the drug I take to retard growth of polyps in my sinuses. The surgery to remove those polyps costs about $20,000. I guess the bean counters at the State Health Plan would rather pay the $20,000 for the surgery than help me pay for the Singulair. Fools.
I visited my otorhinolaryngologist for the first time in over three years. He decongested my nose, sucked the gunk out, and scoped it. He reported that there was no sign of polyps. We reviewed my medications and he opined that we had finally found the correct combination of treatments to keep my sinuses in relatively good shape. He warned that the right combination can change across time, as my body changes. He had his nurse call up Medco and explain that they should cover Singulair for me, as continued use of it is an "essential" part of my treatment regimen. He also mentioned that he now uses image-guided surgery when working on the sinuses. He says it is vastly superior to the methods used previously.
May, 2015
Not much new to report. I have cut back on the use of irrigation and intranasal medications, but continue to take an allergy shot every week and take montelukast every day. My sense of smell remains good.
February, 2018
Sense of smell still good.
July, 2021
My GP has put me on two new meds, an alpha blocker for my blood pressure and meloxicam, an NSAID, for my arthritis, which has gotten much worse lately. One or both of these has led to my nose becoming very congested, leading to breathing problems and hyperosmia. The congestion has prevented me from using my CPAP with nasal pillows. My pulmonologist has ordered a sinus CT to see what is going on in there.
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Dr. Karl L. Wuensch
This page most recently revised on 12-July-2021.