Medical Forum / Diseases and Disorders / Sinusitis / January 2006
Help. What do I do?
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K S - 03 Jan 2006 22:35 GMT Hello,
I've had severe head/sinus problems for several years now. 7 years ago I had a very severe episode that totally reduced my brain power and gave me head pain for several weeks. I couldn't do simple 2+2 math during that time, and the symptoms got worse when I tried to concentrate on school. I went to several doctors and after 5 weeks was sent to a neurologist. He sent me off for a CT scan, but by the time the CT scan came by (8 weeks later) the symptoms had lessened (sinus infection went away). Obviously the CT scan came up negative and the neurologist even said I might be making it all up because I didn't like school. Since then my mom has not believed any of my symptoms and I have kept quiet about my struggles for so long. Neverthless, I continue to get severe infections on average twice a year, which last on average 1 month.
I entered University this year and I began getting severe head pains about a few weeks into the first semester. It resembled what happened 7 years ago, but more severe. My left eye was blurrry often, I couldn't sleep, couldn't think, and my head felt like it was going to explode. Also, my ears kept blocking up, which I cleared up with wax remover each time. I went to the walk in clinic 3 times in a period of 4 weeks, and each time they acted like nothing was wrong or said it was probably some sinus congestion. On my 4th visit, the doctor finally said "I have no idea" and sent me to an ENT.
Now 5 weeks into the symptoms (which are unbearable at this point), I see the ENT who used an endoscope and said that my sinuses are very infected. I told him that I was struggling in school now (even though I was acing everything up until things became unbearable), and begged him for antibiotics because I had exams coming up. He said he wanted to see CT scans first. The earliest CT scan they gave me was for another 5 weeks later.
During this wait for my CT scan, I even went to the Emergency Room at a local hospital because on one severe day I fainted twice and had more than usual blurriness in my eyes. They checked to see if I had a stroke or heart problems and told me to continue with the ENT.
Throughout this time I was doing my own remedies and taking a lot of OTC medicine. I did not write my final exams because I hadn't studied anything properly for 2 months (as if my IQ was 25% for 2 months) and by the time my exams came around my symptoms started clearing up. I continued taking OTC medicine and my symtomps dropped to almost nothing and finally my CT exam date came. I knew the CT scan wouldn't show much because it was more than 2 months after the onset of the "severe" symptoms. I had given my unviersity updates on my condition throughout this time, and they were very receptive because I had awesome grades until I became sick. Nevertheless they wanted a form filled out by the ENT describing my symptoms (the form specifically had boxes for the doctor to checkmark to indicate the symptoms I had, and looking at the list - memory loss, drowsiness , low concentration, insomnia, pain - I noticed that I had all of these for over 2 months).
Right now, I just came back from the ENT (now almost 3 months since the start of my infection) and not only did he forget who I was, he didn't have any record of my original visit (when he diagnosed me with a severe sinus infection). I told him he has CT scans of my sinuses. He was confused, went into his office and spent some time digging up the scans on his computer. He came back and said "you're sinuses look fine." I told him I needed him to fill out this form explaining my symptoms, and he refused saying that I was fine now. I began explaning how this was not my first visit, and that on my first visit I had severe symptoms and how I even begged him for antiobiotics so I could get better faster, and he didn't remember. For some reason he didn't have a "file" or any record of my last visit handy (maybe the receptionist didn't take it out). Then he started saying how I should stop complaining and try to study for a change instead of trying to defer exams. He was implying that I was making everything up, because my CT scans showed "good" sinuses. My mother was in the room with me, and this ENT was still shouting at me, while I was being nice. He finally yelled "get out of my office, I have other patients to see." All I was trying to do is remind him of the original state and how he refused to give me antibiotics. Funny thing is, this time he refused to admit that he refused to give antiobiotics.
Now I'm stuck. My university, where many professors respect me are waiting for medical documentation. I dont' have any at this moment. The walk in clinic I visited several times couldn't diagnose me, so the doctors there don't want to give "specific" symptoms, they only gave me a medical certificate that said I visitted them x times over the last few months. The optometrist found nothing wrong with my eyes. The ENT won't sign my form because he thinks I'm just making stuff up because they can't study and face the exams like normal people.
What can I do? This is the second time I've taken these problems to such an extent (7 years ago I did the same), but got no resolution. By the time the CT scans and specialists come around, my symptoms go away (infections don't stay for ever). How am I supposed to get medical documentation from?
The courses I had this semester were dead easy for me, I had been programming in C for several years, and I didn't even write the intro to C programming final exam. Why? Because the symptoms were that bad. I couldn't think, I couldn't sleep, I was plain "dumb and confused" for 2 months. What is this? I get this same EPISODE around two times a year, I got it in February of last year too.... I am lost................. I don't know what to do.. any advice?
Steven L. - 04 Jan 2006 00:26 GMT > Hello, > [quoted text clipped - 94 lines] > year, I got it in February of last year too.... I am > lost................. I don't know what to do.. any advice? Your situation comes up over and over and over. Believe me, you're not alone.
And I'm going to try to give you some advice based on my hard-won experience.
You know, I have written this exact same reply to DOZENS of other poor souls over the last 10 years, all of whom were in the EXACT same boat as you: The ENT glances at the CT scan, says nothing is wrong and sends you back home to suffer some more. Doesn't bother to check for allergies, doesn't bother to recommend nasal irrigation with the Grossan equipment, doesn't do anything.
Lesson One: To quote Dr. Bernie Siegel: "You have a right to sixteen doctor's opinions."
See if my situation sounds familiar to you: The first *two* ENTs I saw also swore there was nothing wrong with me based on my CT scan, and just sent me home to suffer some more. I had to find a *third* ENT who understood that even CT scans can miss things. (CT scans have about a 5% rate of false negatives. That means that they miss problems in about 5% of patients. I was one of the unlucky 5%). So this third ENT diagnosed me with sinusitis based on my symptoms and history, and agreed to treat me despite the negative CT scan. He was right.
My suggestion to you is to seek out the best ENTs you can find. The U.S. News & World Report magazine does an annual survey of the best hospitals, including the hospitals with the best otolaryngology departments.
http://www.usnews.com/usnews/health/best-hospitals/tophosp.htm
I also suggest you seek out the best specialists in internal medicine you can find, and make one your primary care physician. You need a doctor who can be the coordinator of all your specialists and who will take an active part in seeing to it that the specialists help you get better. Most primary care physicians today don't seem to do anything but write referrals to specialists. Incredibly, they don't even seem to care what the specialists say; once the specialist is treating me, the primary care physician has washed his hands of the problem.
You need to find a doctor who won't act like that.
Good luck.
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Fred - 04 Jan 2006 00:37 GMT You definatly have something that is not just "in your head". I went through many years of medical mismanagement of my sinus problems. I would get "drowsy" in class. A teacher once threw an eraser at me and hit me in the head when I was "dozing off". There was a time where I allways looked "bug eyed" and my vision blurred because there was so much inflammation in the ducts between my eyes and nose and my lower orbitals were swollen. I had an eye exam and the doctor gave me glasses. It did not solve my problem. Many times the doctors would not believe my symptoms. I was fired from one job because I was "nodding off" due to drowsiness. YOu are going to have to do some serious communicating with your professors and tell them that you are not getting the proper diagnosis. Try to keep your sinuses clean with a salt-baking soda solution. I use some Afrin spray(sparingly) to open the clogged nasal passage(s). Nasal Steroid spray works good to decrease the inflammation. If the mucus is green, then use antibiotics. My worst time of the year was spring when I would get an inflammation/infection that would take me 3 to 4 months to get rid of. Hope this helps
sedum41 - 04 Jan 2006 16:01 GMT K S, sorry to hear about your sinus problems and frustrations in getting diagnosed. Are you located in the US? If you give your approximate location in the US maybe someone could suggest a doctor or hospital to go to.
Also did they do a full sinus CT when you got diagnosed? I ask this because sometimes they only do a limited sinus CT or a head CT which wouldn't be as helpful in diagnosing sinus problems. See if you can get your CTs on a CD. In many hospitals you can get the actual CT scans with a viewer program on CD that you can take to another ENT DR. this is most helpful even if new scans are ordered (for comparison purposes). Also another doctor may see problems in the CT scans. Call the X-ray dept directly and ask about this option. This would be more helpful than getting the radiologist's written report.
Also have you been evaluated for migraines? I've gotten migraines that were directly triggered by sinus problems and allergies and had some of the symptoms you've written about such as blurred vision and (of course) severe head pain.
Steven L. - 04 Jan 2006 17:36 GMT > K S, sorry to hear about your sinus problems and frustrations in getting > diagnosed. Are you located in the US? If you give your approximate > location in the US maybe someone could suggest a doctor or hospital to go > to. I've already suggested to him the U.S. News & World Report survey of the best otolaryngology departments in the country.
It's Sturgeon's law all over again. He needs to go for the best, not accept the mediocre.
> Also did they do a full sinus CT when you got diagnosed? I ask this > because sometimes they only do a limited sinus CT or a head CT which > wouldn't be as helpful in diagnosing sinus problems. See if you can get > your CTs on a CD. In many hospitals you can get the actual CT scans with a > viewer program on CD that you can take to another ENT DR. My ENT doesn't think the CD version is any substitute for the film version, given the artifacts, small size, and poor resolution of any computer monitor screen. He always insists on getting the film version. I think he's right. Certainly I can tell you that viewing the CD on a laptop is utterly worthless.
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sedum41 - 04 Jan 2006 18:25 GMT >I've already suggested to him the U.S. News & >World Report survey of the
>best otolaryngology departments in the country. Reading his initial story it appeared he may be from the UK or Europe. In which case the US News report would be of no use to him. The way he described going to 'University' seemed very European to me.
>My ENT doesn't think the CD version is any >substitute for the film >version, given the artifacts, small size, and >poor resolution of any >computer monitor screen. Ok I guess the place I went to (that happens to be in the top 10 on your US News list) is wrong in how they diagnosed me (via the computer generated scans....)
Sometimes I feel I should not participate in this forum anymore, giving my opinions and offering things that have worked for me. I started reading here when I had problems and got a lot of ideas some things that worked, some that didn't etc. Now fortunately I am relatively healthy now. I just thought my opinions would be valuable here presenting an optimistic view point that people can and do get better.
Susan - 04 Jan 2006 18:59 GMT > Sometimes I feel I should not participate in this forum anymore, giving my > opinions and offering things that have worked for me. I started reading > here when I had problems and got a lot of ideas some things that worked, > some that didn't etc. Now fortunately I am relatively healthy now. I just > thought my opinions would be valuable here presenting an optimistic view > point that people can and do get better. Let me see if I understand you; if folks don't universally endorse unquestioningly your every suggestion, you should leave?
Doesn't leave much room for discussion or variety of opinion or experiences, does it?
Susan
Steven L. - 05 Jan 2006 01:21 GMT >>I've already suggested to him the U.S. News & >World Report survey of the > [quoted text clipped - 11 lines] > US News list) is wrong in how they diagnosed me (via the computer > generated scans....) I'm really sorry to hear that. Even the top hospitals in the country can still screw up. And with sinusitis, there isn't a standard treatment program--hospitals vary all over the place--so there's plenty of room for disagreements over matters of judgment.
> Sometimes I feel I should not participate in this forum anymore, giving my > opinions and offering things that have worked for me. I started reading > here when I had problems and got a lot of ideas some things that worked, > some that didn't etc. Now fortunately I am relatively healthy now. I just > thought my opinions would be valuable here presenting an optimistic view > point that people can and do get better. Your opinions are welcome here. We're not always going to agree on what the best course of action is. I have had my disagreements with Don Brady, for example, and I expect I'll have more. Don't take that as an indication that you shouldn't post here anymore.
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Allen L. - 05 Jan 2006 18:38 GMT In news:c87b321024b0e52f26f8f5ec33b5d75b@localhost.talkaboutsupport.com, sedum41 <sedum41@EMAIL protected> typed: <<snipped>>
> Sometimes I feel I should not participate in this forum anymore, > giving my opinions and offering things that have worked for me. I [quoted text clipped - 3 lines] > here presenting an optimistic view point that people can and do get > better. Would have to agree with you in a certain sense. There are three individuals who are very well versed, very vocal, and in unusual harmony with each other on this usenet forum. No need to offer opinions that will differ to a great degree with these three, unless you have documented, notarized *proof* of your statements, or your statements will be torn apart by the 'pack'. You know of whom I speak, and greatly admire for their knowledge, but do disagree with their gang like behavior at times. To name them, in my opinion, they would be Steven D. Litvintchouk, Don Brady, and Susan (x-no-archive: yes). Doc Grossan will even bow out when these three come at him.
But, it does make for educational reading from the gang of three, as they *do* know their stuff, that I will admit.
...Allen
Susan - 05 Jan 2006 19:27 GMT > In news:c87b321024b0e52f26f8f5ec33b5d75b@localhost.talkaboutsupport.com, > sedum41 <sedum41@EMAIL protected> typed: <<snipped>> [quoted text clipped - 20 lines] > But, it does make for educational reading from the gang of three, as they > *do* know their stuff, that I will admit. August company, but I haven't one zillionth the knowledge or research of sinusitis that those others do. I'm a newbie, and I haven't devoted the time or attention to it they have.
Susan
Don Brady - 06 Jan 2006 01:28 GMT >Would have to agree with you in a certain sense. There are three individuals >who are very well versed, very vocal, and in unusual harmony with each other [quoted text clipped - 9 lines] >But, it does make for educational reading from the gang of three, as they >*do* know their stuff, that I will admit. Allen,
Thanks and I hope that you do continue to post your comments.
All I ever want to do is let people know that there are some widely recognized and accepted approaches to diagnosing and treating sinusitis. Realistically, those are the ones that have the excellent prospects for helping people with sinus problems.
Anyone is also welcome to post unproven and novel theories and approaches. Certainly there can also be occasional instances where conventional medical science is wrong or lacking.
But I do think that readers should have the benefit of some comments as to which approaches are known to be widely accepted by medical science, and which ones are novel. Then they can make their own judgment.
Don
Allen L. - 06 Jan 2006 02:49 GMT >> Would have to agree with you in a certain sense. There are three >> individuals who are very well versed, very vocal, and in unusual [quoted text clipped - 12 lines] > In news:76hrr1teqsbcc011rq1mscbcf5io234ul0@4ax.com, >Don Brady <dbrady@pobox.com> typed:
> Allen, > [quoted text clipped - 17 lines] > > Don Thanks for the reply Don. I for one have been a reader and poster to this group since about 1998, and I have learned more from Steven L., but to be truthful, I don't remember if you were posting back then, but I believe you were, so I've learned from you also, more than one can gain by reading book after book. We had two other Doctors that posted back then, Dr. Tichenor from N.Y. and someone else that spoke and talked and quoted like a doctor, but never really said if he 'was' one, but his name or 'nickname' I can't recall. Steven, back then, had more stored accessable knowledge than those two Doc's I would venture. He was posting in about 4 forums seeking relief and answers. Doc Tichenor was more of an allergist than Dr. Grossan, but had good input.
My point being, my being a chronic sinusitis sufferer, I have gained invaluable knowledge from the exploits that are related from individual's posts to this group. We have, in my opinion, had from time to time some radical ideas posted, and being the desperate 'sufferer's' we are, most are willing to try anything. That's what the group's knowledge has saved me from...the grief I would have experienced if I had followed some of the advice offered here, but quickly shredded by knowable members of this forum. Trying every option (almost) beside surgery is the one that has stabilized me to stage of 'moderately painless chronic' instead of 'miserable painful chronic'. I'm still 'holding' my own by using the Grossan irrigator twice a day, and a squirt of Nasalcort (last one on the list - tried them all and all failed, and this one may!) daily and I survive without ever having surgery. But I, like Steven, still have the post nasal drip and lung congestion and the caughing up junk...but thanks to him, I can see that surgery will *not* necessarily cure that PND, so I've spared myself the misery of surgery.
So, to the group of three, although, you *can* appear to be intimidating, and believe me you are if one speaks without knowledge here, but I would hope that people would stick around, such as sedum41, as they will learn much from you three! Susan, as the groups latecomer, is amazingly ranked even with you two in her knowledge of this slippery disease, at least by my observations.
Thanks to all of you for your inputs over the years,
...Allen
Steven L. - 06 Jan 2006 02:33 GMT > In news:c87b321024b0e52f26f8f5ec33b5d75b@localhost.talkaboutsupport.com, > sedum41 <sedum41@EMAIL protected> typed: <<snipped>> [quoted text clipped - 14 lines] > know of whom I speak, and greatly admire for their knowledge, but do > disagree with their gang like behavior at times. Point taken.
I think it's important for everyone on this NG to understand that, unfortunately, there isn't a standard treatment protocol for chronic sinusitis. I've been to several hospitals, and Don Brady has been to several others, and it's striking how they differ in their approaches.
When I have stated what my ENTs have said, I don't want *anyone* to take their word (let alone my own word) as some kind of Supreme Authority. My objection to what Susan said was simply to let her and everyone else know how once again, one more time, ENTs don't agree. This time, they don't agree about the value of online CT scans.
I have a dentist who uses online dental X-rays to treat me and I have an ENT who eschews them.
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Susan - 06 Jan 2006 03:23 GMT > Point taken. > > I think it's important for everyone on this NG to understand that, > unfortunately, there isn't a standard treatment protocol for chronic > sinusitis. I've been to several hospitals, and Don Brady has been to > several others, and it's striking how they differ in their approaches. And I haven't been to any.
> When I have stated what my ENTs have said, I don't want *anyone* to take > their word (let alone my own word) as some kind of Supreme Authority. My > objection to what Susan said was simply to let her and everyone else > know how once again, one more time, ENTs don't agree. This time, they > don't agree about the value of online CT scans. Your objection to what *I* said? I'm scratching my head; what did I say?
Susan
Steven L. - 06 Jan 2006 15:17 GMT > x-no-archive: yes > [quoted text clipped - 14 lines] > > Your objection to what *I* said? I'm scratching my head; what did I say? My mistake. I meant, my objection to something "sedum41" said.
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Susan - 06 Jan 2006 15:25 GMT > My mistake. I meant, my objection to something "sedum41" said. Okey dokes.
Susan
Susan - 06 Jan 2006 15:29 GMT >> Your objection to what *I* said? I'm scratching my head; what did I say? > > My mistake. I meant, my objection to something "sedum41" said. P.S. I assume it's the gang mentality and tyranny that sedum brought up? I haven't seen any evidence of it here, and I sure as heck haven't been part of any club here.
I find all of your experiences enlightening and helpful as I make choices for my own care, but ultimately, I take full charge and responsibility for my health care decisions. My guiding principal is to choose treatments with the least potential for harm that may help. For this reason, I haven't begun to consider FESS.
I can't, for the life of me, understand why sedum seems to require endorsement in order to participate. I've not seen anyone shouted down here.
Susan
Don Brady - 06 Jan 2006 23:55 GMT >I find all of your experiences enlightening and helpful as I make >choices for my own care, but ultimately, I take full charge and >responsibility for my health care decisions. My guiding principal is to > choose treatments with the least potential for harm that may help. >For this reason, I haven't begun to consider FESS. I would certainly not presume to make a judgment on your particular case, but can say that, in general, surgery done by a carefully-chosen expert may often have a much lower potential for harm than other courses of action, such as drugs or living with it.
Having had surgery by a very-carefully-chosen exper, , I regard it as almost risk free in those circumstances, and it would be a very easy choice for me to have it again.
Yes there are risks to do with anesthetic etc. but, again, you are going to have better odds than the statistics might imply if have the right anesthesist and surgeon.
In fact,, surgery can be all but risk and cost free in those circumstances (given insurance reimbursement).
Drugs or living with it may absolutely be a fine choice in some cases, but one needs to bear in mind the risk of infection progressing to the brain etc. if it is near those organs, as well as the risk of drug side-effects as well as possible depression etc.
Now, unfortunately, surgery can pose significant risks when the person has surgery done by the first ENT they see (who may be relatively inexperienced). That is the approach taken by many new posters to this group. Typically, their first post is along the lines of "I have scheduled surgery for the week after next, but am worried about it. Please reassure me," It is hard to know at that point what to say. These are the peopls that have the highest risk (though still small) of adverse outcomes, because they have not got second opinions and do not even have any information on their surgeon's credentials......
tyshock - 06 Jan 2006 15:54 GMT I have come to the conclusion that treating chronic sinusitis is a 'black art'. That's what leads to the frustration level in many. It is a life altering problem. However, in many cases, 4 different people will give you 4 different treatment regimens. Sometimes, the one person out of that 4 who is actually a doctor will give you the least effective recommendation.
In fact, one of the few 'across-the-board' regimens is irrigation. However, I found out about irrigation 6 years ago from this usenet group, not from a doctor. There is one person who regularly posts that doing headstands and running peroxide through his nose cured his chronic sinusitis in a few days. Or, take a blast of afrin 15 minutes prior to irrigation. Others post about various irrigation additives. I've seen a post about holding a vibrator on your forehead/nose region. I've even seen a claim that certain sound frequencies will cause your sinuses to open. There are articles that ice water irrigating is the ticket to a cure. I'm not mocking these methods. I've tried each and every one of the mentioned methods to varying degrees of success (and failure). Hell, I found out about irrigation from the internet, I figured one of these methods may be just as effective.
I've also had my good and bad days with doctors. I'm all to familiar with the family physician who will just try and throw antibiotics at you. On one visit, I mentioned to her that I do sinus irrigations. She said that was excellent. Why doesn't she recommend them herself? The thing is, she is a really good doctor. It just seems many GP's are not trained to properly handle sinus issues. I have an ENT that I really like and I believe has my best interests at heart. He seems to be up on the latest methods of sinus treatment. Even with him, however, i've had bad times. I went in a couple of months post FESS feeling like crap. He gives me a post-op CT scan and tells me everything looks wonderful. However, my pain and headache said otherwise.
Frustration
Woody Long - 04 Jan 2006 20:23 GMT > The courses I had this semester were dead easy for me, I had been > programming in C for several years, and I didn't even write the intro [quoted text clipped - 3 lines] > year, I got it in February of last year too.... I am > lost................. I don't know what to do.. any advice? I definitely think feeling dumb & confused is probably a symptom of the sinusitis. In fact, so many kids are diagnosied with ADHD these days (4 Million I believe in US alone), I wonder how many of these kids simply have undiagnosed sinusitis.
You would not think that it takes a genius to diagnose sinusitis, but it is amazing how often it is missed.
Woody
Fred - 04 Jan 2006 22:17 GMT I totally agree with the fact that many kids with ADD can have a sinus problem. When I look back at the times I was humiliated or punished for being drowsy in class. I tried to study at home at night and would become drowsy. I would compensate by getting up every 15 - 20 minutes and then trying to sit and study again. I read a book in the mid-80's called "An Alternate Apporach to Allergies" (author unknown) and it talked about delayed allergy reactions. It made sense. I was suffering from a sinus condition that would get worse when I would sit down and the adrenaline levels would get lower thus creating a condition where my sinuses would swell more creating the drowsiness. I would tend to eat more candy and drink sugared caffinated beverages causing my body to become pretty hyperactive to try to overcome the sinusitus
tyler.schacht@gmail.com - 05 Jan 2006 18:09 GMT KS,
Have you been on any antibiotics for the infections yet? From your descriptions, it seems like you were denied antibiotics when requested. During my experiences, i was given a first level antibiotic, then a more powerful antibiotic. After not responding to that, the CT scans were ordered. It really sounds like the doctors you have seen are not approaching this correctly. When the ENT scoped you and said you were badly infected, i can't understand why he wouldn't prescribe an antibiotic. If he was concerned it was not a bacterial infection he should have gotten a culture and tested it.
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