Sinusitis: A Treatment Plan That Works
Letters

Since we started this website in the Summer of 1996, we have had a very enthusiastic response. The following represents selected email which we have received. We selected them for a variety of reasons, including an expression of people's appreciation, a sample of people's actual symptoms, and in some cases because email got returned. We hope that they will be helpful to you as well. In each case, we have only used initials as identifiers. In some cases we have had to edit them. Some of the questions get complicated, so feel free to skip down to the answer in those cases.

Letters are followed by comments (in bold). If you have been through the rest of the website, see if your review of the website has allowed you to anticipate what my suggestions might be. Remember that any suggestions here must be reviewed by a physician, and must not be viewed as medical advice.

From: JC
Subject: sinusitis- what else!

I have suffered from sinusitis for many years and after reading your web pages only now think that there is some hope that I can get this problem sorted out. As a first step I have printed your pages and will take them to my GP. I guess one reason for this e-mail message is to communicate with someone who understands the problem.

I wanted to pass along a couple of things I have learned about my problem. First these are my main symptoms currently:

1. Constant, thick mucous drainage from back of nose
2. Loss of sense of taste and smell- I find this very debilitating
3. Feeling of pressure in upper part of nose even though breathing appears to be clear.

I am always worse in the mornings. For about 30 minutes after I wake up I cannot smell anything. Then things may or may not clear up.

Winters are worse than summers, although I do have allergies to pollen, dust etc.

I often find that after a meal (sometimes lunch, often supper), mucous production increases and I will lose my sense of smell.

Things that thin the mucous like hot peppers, fresh, cool outdoor air, etc. provide temporary relief.

I have lived with these symptoms for a long time and have in a way gotten used to them. Your information has spurred me on to do something about it soon. I will call my GP tomorrow.

All the best,
-J

Loss of taste and smell is not uncommon with severe sinusitis. Alcohol can be a problem either due to an allergy to a component of the alcohol or due to the drying effect of the alcohol. It is also common that people will not take their medication at night after taking a few drinks and also decide its too much trouble to turn on the vaporizer. Winter is more commonly a problem because of the dry heat causing the humidity to fall as well as dust being more of a problem.

From: L
Subject: Vaso Motor Rhinitis

Hi, Thanks for the page, it's great! I didn't see any reference to VasoMotor...I am sick almost all the time with it, can you point me to some info on this condition? I didn't test positive for anything, 143 shots!

Thanks so much,
L

Vasomotor rhinitis is due to an unusual sensitivity to any irritants in the environment, but not to allergy. It can be very frustrating, but usually with prescription nasal sprays, and antihistamines, it can be controlled. I would also suspect something else if you haven't responded to those medications, like maybe sinusitis.

From: FS
Subject: Sinusitis

Your information on sinusitis, its treatment, and x-rays was outstanding. I was recently diagnosed with chronic sinusitis which settled behind my eyes. The first round of amoxicillin is over and I'm still in pain. This gives me hope and information that I can take to my doctor. Thank you for taking the time to create and monitor an informative, comprehensive site.

From: J H
Dear Dr. Tichenor,

I'm a journalist, and through the internet was able to read your most valuable information on the complexity of chronic sinusitis. The reason that your article made sense is that it is a fair reflection of what I've gone through. I live in **** and was absolutely unsure as to what steps to take for the future; this is the third or fourth year I've wound up with a bad bronchitis, always starting in early autumn. It was sort of obvious what was at fault, less obvious as to what to do.

You've helped me eliminate some useless and costly wasting of time, and I am very grateful. I am taking my doctor here a copy of your info. for doctors. Anyway, I appreciate it and you may yet see me in NY when I come through.

P.S. Last time an allergy specialist here ran me through his mill, the result was, yes, a special serum for me which was to begin with four daily injections which, for fear of my going into shock, had to be done inside a hospital; the hospital was an hour from home. I regret to say I threw away the expensive serum and decided I would try to find a less dangerous way of dealing with my numerous but (barely) tolerable allergies and the really awful pollution here.

Regards

J H,

Thanks for your note. It is the responses from people like you that made the website worth doing. I wouldn't be so negative about allergy shots. I think that you got the wrong impression about the danger. Allergy shots are routinely given in doctors offices. They don't have to be given in hospitals. The only place where they are more regulated that I know of is in England, where they must be given with complete resuscitative equipment available, and the patient must wait for 1-2 hours. Most allergists including myself feel that is a little extreme, however.

From: N V
Dear Dr.Tichenor,

I have had sinusitis for ten years. I had no health problems until then, except throughout my life I had a tendency to sneeze, especially after meals. I have had surgery for a deviated septum, twice for polyps (by an ENT doctor), allergy shots (supposedly allergic to mites), vitamins, etc. Nothing has worked.

In addition to all the usual symptoms sinusitis brings with it, I cannot smell or taste. Haven't been able to for ten long years. Is there any hope for me? My ENT tries various drugs (currently on Nasacort AQ, Proventil Inhaler) without any noticeable difference.

I just turned forty and have reached a point where the frustration with any lack of positive change has left me very depressed. As a school administrator I know this condition has affected my performance. I would greatly appreciate any suggestions you might have.

Sincerely,
N V

Have you had a CT scan after surgery, endoscopy, and been on all of the drugs that I discuss on my website including oral steroids? If you have, has your ENT talked to you about functional endoscopic sinus surgery (FESS). If you have had that as well as all of the medications, then you may need revision surgery. The problems with smell and taste suggest that there are still ongoing problems which need to be addressed. The steroid nasal sprays all work very similarly. In patients who are not responding well, we will typically give patients samples of a number of the sprays to try, and have them use the most effective one for them.

From: J M
Subject: Thank you, and questions
Dear Dr. Tichenor:

Thank you for taking the time and making the effort to create your web site. It stands out like about a ten-million-candlepower spotlight in the areas of sinusitis and allergies.

My daughter is a 20-year old student at *****. She has suffered for years from sinus infections, probably related to allergies (she has been tested for allergies and is undergoing injection treatment). At the present time, she has yet another sinus infection and is valiantly enduring the head pains and fever to get through final exams this week.

Last week she was able to make an appointment with a local specialist who, during about a 7 or 8 minute office exam, did little else but order x-rays and CT scans. My wife drove up to be present at the 'results' meeting, and was told that my daughter has an infection and probably polyps, and that the ONLY thing that could be done is to have surgery. End of session; out the door.

Now, the doctor may or may not be correct and maybe, because of his experience, could tell that surgery was the only solution. But I personally would have preferred an answer with at least the mention of other possibilities, however unlikely they would be to succeed. Which leads me (finally, with my apologies) to a few questions:

1. We've read of using lasers for surgery. Do they work? Are they better? Fewer complication/faster recovery?
2. If it turns out that surgery IS the only solution, is there any way for us to find out how many procedures a surgeon has done?
3. Is there any way for us to find out how many of these procedures were successful? How many resulted in catastrophic injury?

Thanks again for your web site.

Sincerely,
J M

Usually we try to treat the problems first medically, but surgery is sometimes necessary. I don't have a physician to recommend in ***, but see the website for how to choose. Lasers are sometimes used in conjunction with the surgery primarily to reduce the size of the turbinates ( look at the CT scan page). As for complications, etc., ask questions of the ENT. Good Luck.

From: J F
Subject: a question on sinus problems
Dear Sir,

I hope you will forgive this letter but I can get no answers elsewhere that satisfy me. I am a 43 year old English male who has suffered from polyps for many years. I have had the polyps and sinus membranes removed on countless occasions.

The last time I had a CT scan, they found extensive disease in the ethmoids with almost complete opacification. This was a report from my consultant to another I was being referred to. My symptoms were severe headaches, pains in the eyes so I could hardly see (focusing was extremely painful), dizziness, sickness and confusion. I was even referred to a neurologist at one point. This is because they thought I could not have sinus problems, since I had undergone surgery to remove polyps and strip the mucous membranes only 9 months before!

I have now had an endoscopic ethmoidectomy (9 months ago) and it was extremely bad inside. Two weeks after the operation 3 polyps returned (only small). The pains in the eyes had gone as had the headaches. I was put on several inhalers. I now have headaches and the eye pains once again. Not as bad as before, but starting as before and gradually getting worse. I have had my eyes tested also. My surgeon said that all seemed relatively clear up there after using an endoscope but he wanted to see me in 3 months (January). I mentioned the eye pains but he did not seem interested. My question is, am I going to need to have more surgery as it seems to be getting worse?

Every morning my nose is totally blocked without fail, and there is a large amount of green mucous when I blow my nose. I also get post nasal drip, this has never been cured. I feel that I do require further treatment but do not know how to approach my surgeon, since all I want to do is to get rid of this feeling in my head. Is there anything I should say to him to try and force the issue one way or the other?

I know that he knows best, but it does affect me quite badly, and I would rather have something done now to get rid of this once and for all. I understand that my surgeon is an expert (in England) on endoscopic sinus surgery. Apparently I posed some problems for my local hospital since there were unspecified complications in my case and they cannot perform endoscopic surgery there. Although I have complete faith in him, I do get the feeling that he is holding back for some reason when possibly he could do something to get rid of the symptoms. The eye pains worry me a great deal.

Many thanks for your consideration,
J F

Have you had a repeat CT scan? The kind of problems you have are very difficult to deal with. This is where medicine becomes an art, not a science. Have you been on all of the medications which we suggest including guaifenesin, a steroid nasal spray, humidifier, antibiotics, nasal irrigation, a decongestant, and have you had allergy testing and treatment and immune system evaluation? Most patients, even with problems as severe as yours, can be helped, but it takes someone with extensive experience in treatment of patients who haven't gotten better after surgery.

Sometimes patients need revision surgery, but usually it can be managed with medical treatment.

From: J J
Subject: Enjoyed your web site

I browsed into your web site today. I enjoyed it very much and will pass it on to others.

I suffered from chronic sinus congestion for almost 30 years. I used OTC medications and prescription drugs for a long time. The introduction of Seldane was a blessing because it allowed me to fly without drowsy side-effects (I have a pilot's license), but it left me with another problem. Dry mouth and dry eyes, a nuisance for one wearing contact lenses.

I discovered "olygomeric proanthocyanidins" (OPC's) last winter and have been symptom free ever since. Are you familiar with this? I understand OPC's are used extensively in Europe for hay fever, but has only recently been introduced in the USA. Have you used OPC's with any of your patients?

Thanks again for such an informative site!

J J

Thanks for your comments. Regarding OPC's: I am not familiar with them. Please send me any information which you have. As you probably noted in the website, we don't like to use antihistamines in treatment of sinusitis unless allergies are very severe, primarily because of the drying you experienced.

P.S. I have not received any more information about them, and they are not currently widely used in the U.S.A. They are mentioned in the book "Sinus Survival" by Robert Ivker, but I have not seen other information on their use.

From: b
Subject: using Vancenase with ongoing bacterial infection in sinuses

I am a person suffering from an on-going sinus infection. Antibiotics aren't helping much and my ENT doctor has prescribed Vancenase. My internist who started treating me says not to take this medication till symptoms of bacterial infection are through. Who do I follow? I am confused and not getting any better. I have night sweats, low grade fever, feel very weak and no drainage. Please help.

Thanks very much.
B

It is a common misconception by internists that steroids should not be used in sinusitis. In general, we do not like to use steroids when patients have an infection because they may worsen the infection. Because nasal steroids are essentially not absorbed, and they reduce the inflammation in the nose so that drainage can occur, in general, they should be used for sinusitis.

From: K R
Subject: sinusitis in children

My 3-year old daughter has had "sinusitis" for at least 2 years. She is intermittently on antibiotics, and the fall and winter seasons are almost a continuous antibiotic session. At the age of 5 months she was hospitalized for bronchiolitis or "baby asthma". Are these constant episodes of "colds/coughs/sinusitis" a result of that early illness? One friend told me that she was too young to have sinus problems since children's sinuses are not fully developed yet. Is this true? I have also been advised to look into homeopathic remedies for her recurring problems. Any advice, including nutrition or allergy testing would be greatly appreciated, since her pediatrician just writes up amoxicillin and cardec prescriptions all the time.
Thank you.
K R

Some of the sinuses are developed at that time. It is hard to tell if the original episode may have included an episode of sinusitis as well. I don't have any experience with homeopathic remedies. An allergist would be worthwhile seeing as an evaluation at this time for allergies, for evaluation of the bronchiolitis and immunological problems , as well as seeing a sinusitis specialist.

From: W M

My 4 year old daughter has just been diagnosed with sinusitis, after previous diagnoses of adenoid problems (she had them out) and asthma (the medication did not help). Her only symptom has been a cough that continues until she throws up mucous. My question is this: you recommend the use of a vaporizer in the bedroom, but you also recommend getting everything out of the room that could breed dust mites (she is highly allergic to dust mites). Are the two incompatible?

We like to keep the humidity at the lowest between 40-50% for sinusitis. There is a problem with keeping the humidity higher than 50% in patients who are allergic to dust mites or mold since dust mites and mold like a humidity above 50%. So, it's not incompatible, although in patients who are allergic to dust or mold, we obviously like to keep the humidity lower than we would otherwise. If she hasn't seen an allergist, she should see one.

From: J B
Subject: Thanks for the website
Dr. Tichenor,

Just a note of appreciation for the information you have on the website. I have numerous allergies and am very prone to sinus infections, but have not sought a lot of treatment until now. The information you have given will help me know the best way to do battle.

J B

From: ps
Subject: Headache
Dr. Tichenor

Just found your page. My bride has suffered with headaches diagnosed as Migraine; some of them were. Some of the head pain was due to meds. Currently taking DEPAKOTE, avoiding cola, caffeine, and other triggers. The pain is on the bridge of the nose, directly above the nose and at the inside corners of the eyes. It is constant, worsening with activity and wet weather. Scans, MRI and CT are clear. Any chance this is allergy/sinus ?

Maybe. The most important thing in evaluating possible sinus problems is the history and physical exam. A CT scan is usually accurate in evaluating for sinusitis, but it can also be difficult to interpret or underinterpreted. She may also need a nasal endoscopy, and/or allergy evaluation. She really needs to see a sinus specialist. Look at my website for information about how to find a physician.

From: SM
Subject: website
Dear Dr. Tichenor,

I found your website via the newsgroup, alt.support.sinusitis. Just wanted to let you know, I found it very comprehensive, in retrospect of the past 2 years of searching/treatment. I wish it had been here before, it answers so many of the questions that I had trouble finding on my own. Usually doctors do not tell all unless interrogated. Also it helps to review, as it is all very complicated.

I have been to all the specialists, had FESS surgery, and even now under the care of pulmonologist for cough variant asthma. My allergy tests came out too low for treatment, and I still continue to have mucous causing cough (intrinsic asthma) and I feel the asthma meds do not address the cause. Especially lately, I have been on a roller coaster of getting slightly better and much worse. I'm not sure who to call since I don't want to go through all the tests, etc. again. My insurance is not in force yet ($5000 deductible), and I never really got anywhere with the allergists (2).

I had much trouble with the antibiotics: too many types and too much for my system set off extreme rashes, so that I became allergic to almost all that I tried. I think Docs must be careful not to overload the delicate human system with these substances. I'm afraid of them now and it has been suggested that I will forever be allergic to them. Thank you for listening, it may help me just to write this out. Any suggestions you have are appreciated. Mainly I wanted to say what a good service you're doing with the website.

Sincerely,
S M

Thanks for your comments. Patients with asthma must have their sinusitis adequately treated in order to control their asthma. Unfortunately it often means having to repeat the CT scan or endoscopy. The antibiotic treatments are a major problem for a lot of people, but if you have had surgery, the sinuses have been allowed to drain, and sometimes the antibiotics can be avoided. This must be carefully evaluated by a physician, however. Taking care of sinus problems can be very difficult, but it can be done if you can find the right doctor.

The following was written in response to my comments to a question. Unfortunately I don't have the original question or comments:

Your comment about 'optimal medical treatment' sounded like a well advised warning. I had surgery in 1993 for polyps. The result : congestion gone, sinuses dry, voice nasal. I was told I had allergies and took allergy shots from 8/93 to 8/96. I was at that time on a disability, because no one could understand me.

Last summer, when I went out, my sinus would swell, and were dry and hot. That was it! I checked around for the best allergist in the **** area ( checked with the Medical complex). The recommendation was a team of allergists. They did a sinus swab, read reports of prior CT-Scans, did skin testing. Conclusion: no allergies, the problem was in the structure of the sinuses. Prior surgery was of little value because surgery done when the sinus was infected. Told them how can I be tested positive for allergies 3 months ago, and negative now. They simply said allergy skin testing is a art, and it has to be finely tuned and understood. They ordered a CT-Scan---- it was a mess.

They told me allergy shots were a waste of money, but left further choices up to me. I asked for 2 good surgeons at the university --- they gave me names. Have seem them twice. They won't discuss surgery until the infection throughout all the sinuses cleared. I was told my problem with dryness ( and nasal quality ) was not allergy ---- my sinuses couldn't work right. Any advice is welcome. They have taken tissue samples, and many pictures with a camera.

TM

It sounds like you are not getting answers about what needs to be done and how to do it. Whether or not you have allergies is difficult to tell based on the history. I don't like to tell patients that the tests done previously ( if done by a well trained allergist) are invalid. There are too many things that can affect reactions: from location, time of day, other medications, extract potency, extracts used, time of year, etc. Reports of CT scans are often useless. They must be reviewed by the treating physician, not just a radiologist. I'm not sure what was being referred to about needing to clear up the infection, as surgery is done because medical treatment isn't working..

From: B L
Subject: Nonspecific systemic allergies
Dear Dr. Tichenor,

I have been very ill all of my life (I am 37 years old). I had pneumonia 12 times when I was a child and all of the testing that was done at that time was negative, including numerous gammaglobulin and allergy tests on the skin. All of the blood work since then, including the RAST tests, have all been negative. I have asthma, chronic sinusitis, and numerous hypersensitivities and am in constant agony.

No one knows what to do for me anymore. Two years ago my IgG count plummeted from 1052 to 789 in one month and no one knows why. It is now only 889 and I continue to suffer unmercifully with all kinds of bizarre sensations including prickling, itching, feathering, burning, pinching, joint pain, post nasal drip, sinusitis, bronchitis, and asthma. Otherwise I am the picture of perfect health (on paper).

Two years ago I must have seen at least a dozen traditional allergists and ENT's, and no one could find anything wrong with me. I finally went to the ******** when I became unable to walk. That was when my IGG level plunged to 789. The allergist that I saw there said that I had an overreactive immune system and recommended gamma globulin shots. I have had several of these to no avail, and am taking enormous amounts of vitamin C and antihistamines in an effort to try to keep things under control but it's not working. It just gets worse and worse and no one knows what to do.

The only things that I have ever reacted to on my skin was grass, dust, mold, and dogs, and then the reaction was not severe enough to get shots. I have never had hives and I know that I am allergic to a great many things than those four, but my allergies are systemic reactions and extremely inflammatory. Of course I have been on every allergy and asthma medication known to man over the years, but nothing works. It just keeps coming and coming and I am getting pretty desperate.

Any suggestions you would have would be greatly appreciated.

Sincerely,
BL

There are a couple of things that I can comment on. If you have chronic sinusitis, it must be treated as discussed in this website in order to get it better. If you have not had a complete evaluation of your immune system, it must be done. While the IgG levels which you quoted above are at the low end of normal, they are not below normal. Typically unless they are abnormally low and you do not respond with an increase in antibody levels after injections with a vaccine such as Pneumovax, gamma globulin shots don't help. Antihistamines need to be used with caution. Any allergy must be treated , even if it appears to only be causing a slight problem, as it can make the other problems more difficult to treat.

From: A
Subject: Sinusitis website
Dear Dr. Tichenor

I was pleased to discover your sinusitis website, and found it informative. I have suffered from severe sinusitis for nearly a year now, primarily because I was repeatedly misdiagnosed by several physicians at the *******. Luckily I am in the care of a good sinus specialist, but after months of antibiotics and steroids and decongestants we have decided to proceed with FESS in September. I write primarily to mention that I have rarely seen any discussions in the medical literature I have encountered (extensive searches on medline and on the web) on the *constitutional* symptoms of untreated sinus infection, and to suggest that it would be a great service if you could address these on your website. I suffered -- and continue to suffer to a lesser extent -- a wide range of myalgias and arthralgias, ringing in my ears, severe fatigue, skin problems, and depression as my infection was repeatedly misdiagnosed as either a "post-viral syndrome" or as psychosomatic by ID specialists looking for a viral cause of my symptoms.

All of these symptoms abated with antibiotic therapy, although there are still times (especially after the barotrauma of air travel) when the knee and muscle pain (especially under my arms) returns in concert with a worsening of sinus pressure, pain, and blockage. I don't know how common such symptoms are statistically, but anecdotally I have encountered many sinusitis sufferers who report similar constitutional symptoms, and for my own case I am 90% certain that all of these symptoms were caused by an underlying, untreated bacterial infection in my sinuses.

My ENT agrees and has seen similar cases, although other MD friends of mine are sometimes dubious that such symptoms could be the result of a localized infection. Just knowing I am not alone in this experience has greatly reduced my anxiety about the cause and the debilitating nature of this sickness, and I think it would be a great service to have more information available to more people concerning these kinds of symptoms and also concerning the persistent misdiagnosis of sinusitis, which appears to be extremely common also.

Thank you for the service you are providing.

A

Thanks for your comments. Constitutional symptoms are very common. Unfortunately because it is not well publicized, many physicians don't appreciate it.

From: ok
Subject: sinusitis

I find this a very interesting website because I am a sinus sufferer. My experience is that my sinuses seem to back up when the weather changes in wintertime. Also I have continual clicking or popping sounds in my ears, similar to when you are flying in an airplane and changing elevation. I do not have any problems in the summer whatsoever.

I have allergies to dust and household dust mites. I have taken injections twice for up to a 2 year period without any relief. I am 41 years old and have suffered with this condition as far back as I can remember but it seems to take longer to get rid of it now. I am trying to find out what triggers this to happen. It may be related to the forced air furnace coming on in wintertime but I have tried electrostatic furnace filters with no luck.

I use a combination of DimeTapp and vitamin C with bed rest and plenty of fluids to get better. This seems to work in about 3-5 days. Typically it starts with phlegm running down the back of my throat, and then my throat getting sore, and then I plug up. I wonder if this is a common occurance among other people as well and if you have any recommendations for me.

Also does it seem likely that if I participate in a sport which is very aerobic, would this cause mucus to be generated at a greater rate and therefore a chance for blockage to occur after the sport is over. I guess I should tell you that I live in Northern Canada which has temperatures of down to minus 40 at certain times in the winter.

Do you know if people who live in places like Arizona which have a relatively constant climate suffer from sinus conditions as well?

Any info would be appreciated.

Thanks
O K

Winter time is a major problem time for sinusitis due to the dry air. We suggest that people need to have a humidity of 40-50%. HEPA filters will work better for most people. Antihistamines can sometimes be too drying for long term use. The other medications are listed elsewhere. The allergy problems need to be addressed. The clicking sounds are probably related to the sinusitis. People in Arizona also have problems with sinusitis as well. Usually most people find that after sports, their nose will clear up for a while.

From: ST
Subject: sinus and asthma with 5 yr. old daughter

I am the parent of a five year old girl who has been in and out of the hospital since she was 20 months old. We seem to be caught in a cycle and I would like to get out of this cycle. Her allergies are quite high or significant & we had sinus surgery performed on her back in Jan. of this year because she kept getting sick every month for about three months where her white blood count would shoot up to 33,000-43,000 ( normal is less than 10,000) and we would hospitalize her to give her I.V. antibiotics.

After the surgery she did great until around the first of Sept. when she had an asthma flare up and then a week after we got that cleared up, she developed a high fever and wbc test showed 33,700 so it was I.V. antibiotics for ten days again, (1 gram of ampicillin every 6 hours for ten days).

Currently we are giving her rhinocort once daily, nasalcrom twice daily, nasal irrigation with saline three times daily,and nebulizer treatments four times daily (intal, proventil) and vanceril inhaler when she is coughing. We just did a culture from her nasal area and it did not grow anything of any significance I was told. I read in your info. that you can't do a culture because the bacteria is different in the nose than in the sinuses. I am very frustrated because I feel this cycle is going to continue, yet I have limited access to specialists other than the city where I live, and that is limited. Any information or advice would be greatly appreciated.

Those problems sound very difficult. In patients who have had surgery, sometimes cultures can be helpful if they are done at the time of endoscopy into the sinuses. It sounds like she really needs to see someone with the ability to deal with difficult sinus problems. Has she had a repeat CT scan, allergy tests,environmental controls, consideration for allergy shots, immune system tests, and tests for cystic fibrosis?

From: BM
Subject: sinusitis in cystic fibrosis

My 12 year old daughter (dob 1/29/84) has cystic fibrosis, which is complicated by her allergies, and chronic sinusitis. She has had a total of 8 sinus surgeries (all endoscopic except 1 "caldwell-luc" done in June 1995), the last one (FESS) being in May of 1996. At that time she was treated with IV tobramycin and fortaz for 3 weeks.

She began having symptoms of sinusitis again in August, and after 2 weeks of oral septra was again treated with IV tobra and fortaz, for 3 weeks. Two weeks later, she was sick again, and was treated initially with Lorabid and Septra orally, also inhaled tobramycin via a pulmoaide nebulizer. The antibiotic was switched after 2 weeks with no improvement and she was placed on oral ofloxacin. After a week she had a CT scan and it showed her sinus disease is now worse than it was prior to her surgery in May. During the surgery in May she had a culture done and she has pseudomonas growing in her sinus, at that time it was resistant to ofloxacin and cipro. She also has aspergillus in her lungs but not in her sinuses at that time. She is now back on IV tobra and fortaz and is not improving after 1 week on these meds.

If she is resistant to these antibiotics what would you recommend, if anything? We are waiting on results of a sputum culture taken a week ago. Like most CF patients, she has colonized Pseudomonas in her lungs as well. However her lung disease is considered mild. Any advise? Does she need a new ENT? The one we are seeing comes highly recommended by our CF specialists, and seems very competent. She is also a very good listener and caring.

I realize you probably can't help but stumbled across your web site and thought I'd give it a try. My daughter is currently on the following medications in addition to the IV meds already mentioned: Orals: Pancrease MT 20, Zantac, Propulsid, colace, multivitamins, vitamin C, vitamin E, vitamin K, Duravent, Zyrtec. Inhaled: Albuterol, Intal, Pulmozyme (these 3 are by neb treatments), and Azmacort inhaler. Nasally: Saline spray and Flonase.

She has also recently been on oral prednisone, this was during the week prior to going on IV's this time. She is seeing an allergist in addition to her regular pediatrician, CF specialists and the ENT. She is allergic to most everything environmentally, such as pollens, trees, grass, molds, dust, animals and so on. She recently began allergy injections (in July) but since she keeps getting sinus infections, she hasn't been able to stay on the shots. The policy is to not give the shots if there is an active infection present.

We live in ****** and the smog is probably a factor but we don't have the option of moving right now. She is treated at ******.

Thank you for reading and if you have any suggestions I would very much appreciate them.

BM

Treatment of sinusitis in a patient with cystic fibrosis is very difficult, and I can just suggest that you make sure that the people involved have experience in both treatment of sinusitis as well as cystic fibrosis. Has she had a repeat CT scan and endoscopy? Sometimes reoperation is necessary, in addition, is she on all of the other medications which we suggest? Sometimes irrigation is also helpful.

From: M
Subject: chronic sinusitis and oral apthous stomata
Dr. Tichenor,

I have just diagnosed myself as having chronic sinusitis with concurrent debilitating canker sores of the mouth, tongue, etc. Canker sores are thought to be immune related and are effectively treated with cortico-steroids.

Thank you for your web site. It has enabled me to diagnose my chronic illnesses and have some hope for the future.

I feel outraged that my ten years of treatments and complaints to an allergist (I have a long history of allergies and asthma), four years of visits to an ENT for the most egregious of my sinus problems and an appointment with a professor of oral medicine at **** (for the canker sores) have given me *no* insight into my problem and its solution.

Thank you once again for giving me the information I need to begin to restore my health.

M

Please don't be outraged, as many very good doctors don't know how to treat sinusitis. We see patients like that all the time. Just be happy that you now have learned how it can be treated. There is also a medication for canker sores called Aphthasol.

From: d
Subject: Tension causing sinusitis attack in chronic sinusitis
Dear Dr. Tichenor,

I found your website an eyeopener in many ways and I am in the process of discussing it with my doctor. Over the past several months, my son has averaged an attack every three weeks or so (your definition of chronic, I believe) which is greatly relieved after 5 days of 500 mg of amoxicillin 3x a day. UNTIL NOW he has only taken it for ten days, however, after recovering from his last attack (which was before I read your article) he has been taking 250 mg 2x (and recently 3x a day) as prophylaxis.

Now, three weeks later, he's back with a full-fledged attack. My major question is this: virtually each attack was at a period of greatly increased stress. Could it be that although there is a definite physiologic underpinning, (as indicated by the ct scan) his symptoms are triggered by stress? Does it make sense that the same drug that is effective in larger doses is totally ineffective for prophylaxis? Thanks so much for your article and for your availability!
D

Yes stress can be a problem, BUT the problem is more likely to be due to the antibiotic being used in too low a dosage, or resistance being developed.

From: MW
Subject: childhood sinusitis and adenoids
Dear Dr. Tichenor,

Thank you so much for your informative web site. My 5 year old has been suffering from sinusitis for the past 3 years. Two ENTs have suggested that he have his adenoids removed before they tried any other kind of treatment on him. His pediatrician put him on Augmentin numerous times, but the longest course of treatment was 3 weeks. We were dissatisfied and turned to a 3rd ENT who said that all children's adenoids are large and suggested that we do a nasal culture (which you have discounted). One time it showed up as staph and hemophilus (sp?) and another time nothing showed up. He has problems sleeping at night and is irritable and tired all the time.

My questions:

1. Should we pursue more aggressive antibiotic treatment with cortisone nasal sprays (which were never prescribed)? (I'm worried about overusage of antibiotics)
2. Would an adenoidectomy work?
3. Does anyone do suction of the sinuses anymore? Is it dangerous?

We usually like to treat people medically if possible in order to try to avoid surgery. Sometimes if the sinusitis is treated, the adenoids may get better. It is impossible for me to answer specific questions without examining him, but in a sinusitis, it must be treated completely including nasal steroids. Antibiotics need to be used for a long enough time to cure the problem, but there can be problems along the way. Suctioning of the sinuses is rarely done now. Cultures of the nose do not represent what is going on in the sinuses. Sometimes if we see actual pus in the nose, we may do a culture, however. Fatigue and irritability are very common with sinusitis, but the problems with sleeping at night can be due to his adenoids blocking the back of his nose. Good Luck.

From: L A
Subject: Remarks on website

I just wanted to let you know that as a chronic sinus sufferer for over 10 years (through four physicians) I got more information about my condition in 30 minutes on your site than from four doctors in 10 years!

I am grateful for the information and hungry for more. I am having trouble finding a physician that is as knowledgeable as yourself about the condition. I live 30 minutes south of ***** I am currently suffering through another situation where it appears that the antibiotic that had been working for me has ceased to work. A lot of pain, pressure, etc. This is truly affecting the quality of my life! I have had sinus xrays years ago that found no abnormality. I have allergies to mold, dust, cats. I am a middle aged woman. I try to control the allergies but the infections just keep coming. Any other information (reading materials, other websites, etc.) you could give me would so much be appreciated.

Thank you again for "sinuses.com". You have done sinus sufferers a really positive service!

Copy the section for physicians, and take it to your doctor. Remember that it is often hard to find someone who has adequate experience treating sinusitis. There are many good physicians (including otolaryngologists, allergists, internists, etc.) who just don't know how to treat sinusitis.

If you haven't had a CT scan, and/or endoscopy, you should have that done as well as allergy testing and treatment by a good allergist. It is not unusual for the antibiotics to stop working because with enough use, the bacteria may become resistant. Don't forget that you need to use other medications besides just antibiotics. Also please see the bookmarks for other areas that you may want to investigate. Good Luck.

From: d
Subject: Re: Need Info

I have been a sinus sufferer from my earliest memories, which go to grade school. I am 40 tomorrow and "HAVE" to use Afrin to sleep at night.

I own a cat, and am aware that there lies part of the problem. I have spoken to my doctor about this and he seems to think that once a day Afrin use is no problem. While I tend to agree to an extent, I would dearly love to breathe as a normal human. I am capable of self oxygenation during the "PERFECT" weather days in the southeast but the second a new system moves into the area, I feel like the "Clampet" family since I am able to tell the weather with my nose. Is this FESS what I should seek?

Help is appreciated, investigated, and instigated.

You may be addicted to Afrin and that is the probably part of the reason for your problem. Usually with decongestants, cortisone nasal sprays, and if necessary oral cortisone, you can be helped. You also may have it due to sinusitis, allergies, etc. You definitely need to see a specialist to be evaluated. FESS might be considered, but you need medical treatment first. I assume that you think that you may be allergic to your cat. If that is the case, it is extremely important to see an allergist.

From: J G
Subject: CT scan scheduled Thursday
Dr. Tichenor:

I have been reading your comments in the sinusitis newsgroup (alt.support.sinusitis) and tonight looked up your website. Have printed out some of the information to study offline. I have had chronic sinusitis and have a limited CT scan of the sinuses scheduled for this Thursday morning. I expect after that I will be seeing either an ENT or an allergist. I just want to thank you for all the information. You have much more on your website than I am ready to wade through just yet, but I did at least get started on it.

I also thought you might be interested to know that my son had a sinus infection more than a year ago (at age 12), which resulted in a brain abscess, when microaerophilic strep passed through the membrane from his sinus to the lining of his brain. I'm curious whether you have ever encountered that before. After four craniotomies, many CT scans and MRIs, and much therapy, my son is fine.

I'm sure I will be back at your website for more information as I learn more about my own sinusitis.

Thanks.
J G

Brain abscesses are a known but fortunately rare complication of sinusitis. In some areas, the bony barrier between the sinus and the brain is very thin, and as a result in severe sinusitis, it can break through.

From: J P
Subject: Your Web Pages

Thank you so much for making the commitment to putting this valuable information on the Web. It's reassuring to know that an M.D. has experienced this affliction and is willing to share his views on the topic. Wish I lived in NY--you'd have a new patient!

From: J W
Subject: Your WebSite

Your WEB Site presents the best and most comprehensive information on sinusitis I have read anywhere! I am a long time sufferer, who has about given up hope of improvement. I have tried allergy shots (for about 14 months now), the nasal sprays, antihistamines, etc. Nothing has worked very well for me. I am going to digest the information on your site and consider what to do next.

Thanks for a great public service (this could not have been easy)!

J W

Note that we don't like to use antihistamines except under unusual circumstances, and most people need mucus thinners, decongestants, steam, antibiotics, and a steroid nasal spray.

From: g r
Subject: Great Web Site!

Hi, I'm one of those long term sinus sufferers and I appreciated the work you've done to publicize the problems long term sinus suffers face. While I've seen much of this material before (particularly in Sinus Survival by Robert Ivker), its always good to hear stories of people who have persisted against a long term illness and have prevailed.

My problems go back to 1990. I've had surgery once, but was dismayed after my ENT gave up on me... He recommended I see a neurologist. I thought this was his way of saying that I must be crazy...

Anyhow I'm off to see my third ENT next monday but I doubt he is a long term chronic sinusitus specialist. If you would like the long version of my troubles I can send that too....

Also, If you could comment on fungal infections on your web site, that to would be of interest. I haven't been able to rule that out yet...

Thank you,
G R

Thanks for your comments. There is a section on fungal sinusitis in the MD's section.

Interestingly a recent study showed that over 50% of patients with headaches which were difficult to treat could be helped with sinus surgery. These were not patients who were selected with sinusitis, just with headache. I'm not sure I believe that the percentage of intractable headache patients who can be helped is that high, but it indicates how important sinusitis is in evaluation of a headache problem.

After you have been operated on, it is usually possible to treat the problems, but it becomes even more difficult to treat if a doctor isn't familiar with how to treat it. But, it doesn't mean that it can't be treated, since almost all of the patients we see do get better. Good luck.

From: MR
Subject: Sinuses
Dear Doc,

I have pretty much given up hope of a cure. Here's what I have tried (probably the same story you have heard for years):

I get 3-4 sinus infections per year. Always treated with antibiotics. This last infection was a rough one, wouldn't respond to 3 different antibiotics (6 weeks worth). In addition I had another set of allergy testing done, no known allergies.

I used 3 different types of prescribed nose sprays (Beconase, Nasacort and one other). I was put on Prednisone; it didn't help. Finally I was given a CT Scan and very little infection was there. I have an enlarged turbinate was the only finding.

He gave me a shot of Kenalog ( an injectable steroid) in the hip; it doesn't work. So my doc says that I am one of those unfortunate people for which medical science has no answers.

I need help, life is very difficult always feeling like this! I have 4 kids and no energy to be with them.

Thanks,

M

It sounds like you are pretty sick. Make sure that you have been on all of the medications we suggest for a long enough time and in a high enough amount. (Consult with your doctor) . You need to find a doctor who is thoroughly familiar with treatment of difficult sinusitis. It is extremely rare for a reason not to be found for those kind of problems.

Sometimes the CT scan may be interpreted too conservatively: when you say that there was very little infection, you obviously were told that there was some infection. That may be enough to indicate that there is a sinus infection going on which is severe enough to cause you problems. In some of the sinuses, especially the ethmoids, which are very small, just a little inflammation can cause severe symptoms. (See the CT scans elsewhere on this website.) I have a patient who is being operated on next week because of an infection in the ethmoid sinuses which is only in one of the sinuses about the size of the eraser on the end of a pencil, but it is causing him severe headaches, and he is debilitated. He has not responded to medical treatment. As a result, we have decided that the only course of treatment is for him to have surgery.

Most of the time, we don't like to use injectable steroids because of potential side effects. (The injectable steroids stay in the body for weeks). If side effects start, it is impossible to get the steroids out.

Good luck.

The following is from a doctor who has a site on the internet, which you may want to visit. His URL is in the Bookmarks section.

From: Murray Grossan. M. D.
Subject: sinusitis

When there is sinusitis, sinus pain. or post nasal drip one usually finds that the nasal - sinus cilia are pulsing too slow. Normal cilia beat at 16 pulses per second to move bacteria and phlegm out of the sinus so that they don't enter the body. It is important to use measures to insure cilia beat including saline nasal spray, hot tea, pulsatile saline irrigation using a Water Pik^tm; and the special sinus attachment.

Papaya enzyme is also recommended. This thins the mucus and helps the cilia. In addition it reduces swelling. Thus if there is pain from the sinuses, this usually helps swelling of the membranes and papaya is an ideal simple remedy to use.

Use the chewable papaya enzyme tablet, one 4 times a day, dissolve in mouth between the cheek and the gums. This also helps the chest; when the cilia of the chest fail, coughing takes over instead. So the papaya thins secretions and helps the cough. An additional use of the papaya is that since sometimes the infected area is so swollen, the antibiotic is not so effective, it is too "dilute". Papaya helps the antibiotic to be more effective in such cases.

Murray Grossan, M.D.

Dr. Grossan developed an irrigation device which is very helpful with patients with sinusitis. You can find a way of ordering it at his website, a link for which is contained in the Bookmarks.

From: C
Subject: HIV/AIDS panic

i recently went abroad to **** and while hiking in the mountains, i had a bad cold. it went away after a few days but when i came back to *****, i had a lot of pressure behind my eyes and in the top of my head. i went to the doctor and he said it was an acute sinusitis. later, i found out that sinusitis is supposedly common among hiv positive individuals. a week or so before i got that cold, i had concerns about the possibilities of contracting hiv from blood or semen in a bathroom because i had a splinter in one of my fingers. i know it is not supposed to be contracted that way but i just got a little paranoid.

the doctor prescribed 10 days of biaxin and then it was followed by about 10 more days because the symptoms did not totally go away. the symptoms were little pains in my head that would come and go around my sinuses and in the back of my head sometimes (usually fairly sharp but sometimes a little dull), and pressure in my head and behind my nose.

i went to a nurse after about 17 or 18 days of taking biaxin and she said to stop taking it because if i had had a sinus infection, she said there would have been lots of green mucous coming out of my nose. she said it was just a virus and that it was just taking a while for it to go away. now i still have mild pressure in my head from time to time during the day mostly behind my nose and my nose is sometimes congested but not runny... just congested toward the top of it sometimes. and i still have little pains here and there in my head that seem related.

i had a cough after the cold for about three weeks and that has mostly gone away but there has been some post-nasal drip and the cough has started to come back now and then but then has gone away again after a few days.

i just got really scared because the nurse seemed to be implying that it was not bacterial and if it was not bacterial, then i fear that it could be hiv. especially because she said that if it had been a bacterial infection, there would have been lots of greenish mucous coming out of my nose. so i have gone to the doctor twice and they have not really told me anything helpful.

this makes me really nervous and i will probably go ahead and get tested for hiv just in case but for the time being it has not been long enough for an accurate test... it has been about two months that i have had sinus problems and i am concerned that it is the result of hiv contraction a week or so before that.

is HIV sinusitis anything like what i am having? for the time being, it would just help me tremendously if i had some idea of what is causing my sinus problems and if it is likely that it is the result of having recently contracted hiv...

please try to find a little time to give me some insight as to how similar this situation is to hiv-related sinusitis. and about what i should do either way with this problem.

oh, also, i was told that it might be allergies but i have not been sneezing and it has persisted even though i have been driving a lot throughout the east coast . please help me to have a better idea of where i stand and what to do...

thank you for your time and consideration,

cr

You have a fairly long history, but I will try to briefly answer. It is extremely unlikely that you could contract HIV disease the way you described. The nurse was describing acute sinusitis, not chronic. As you probably read in the other section of the website, long antibiotic treatment is often necessary. Occasionally sinusitis is viral, but usually it is bacterial. HIV sinusitis can be similar to other kinds of sinusitis, but is usually more difficult to treat. It is critical that your allergy problems be treated in order for your sinusitis to have the most likelihood of being controlled.

From: M T
Subject: Sinusitis

I wanted to express my appreciation in respect of the information published on your web site.

I first developed the symptoms of sinusitis in the early 1980's, and was exposed to the pleasures of numerous sinus washouts and two Caldwell-Luc operations. As a result, the symptoms became easier to live with but did not disappear entirely.

I have experienced chronic and acute symptoms since about 1994, which have resulted in a feeling of hopelessness exacerbated by the attitude of an ENT specialist who all but says that I have to live with it. I experience headaches on a daily basis, together with fatigue and "jitters". It makes the demands of running a business almost impossible.

Anyway, many thanks for taking the trouble to publish so much class information; I shall check the page regularly.

Regards
MT

As you have probably gathered from this website, with medical treatment and if necessary surgical, you shouldn't have to suffer. It is not unusual for the Caldwell-Luc operations to not work. The problem with them was that they did not open up the natural opening of the sinuses, and as a result sinuses still didn't drain correctly.

The contents of sinuses.com © 1996, 1997, 1998 by Wellington S. Tichenor, M.D. Last update 1998. Reproduction for educational, not-for-profit purposes is permitted if this source is credited and the author of this website is notified of any reproduction for other than personal use. If used on the internet, a link would be appreciated.