Olfactory neuroblastoma in the maxillary sinus - recent diagnosis

jmatt said:

I'm not entirely sure if the
I'm not entirely sure if the message is directed at me or the others in the forum - but 'what its worth', if the message is directed at me, is that you are a fairly skeptical person by nature. Or, you know the punchline to a joke that I didn't realize I was telling... chuckle... but, for what it is worth, I rarely get offended, despite having strong convictions...

Let me rephrase if you are actually hoping to have skepticism confirmed or quelled...

You have no doctor. You have been sickly for years, but shuffled that to the back of the priorities of a life without days off.

Suddenly it has become difficult enough to work that coupled with the inherent economic difficulty of said work, you are no longer working.

Suddenly your problems have subtly drifted much closer to your consciesceness and seem a bigger priority.

You still have no doctor. But, you have access to the internet, where there is probably more information than most doctors have at their immediate disposal anyway.

Among the things that bother you some is a large, palpable mass above your teeth. Your other sypmtoms are at least easily recognizable and describable, unlike this one.

With a history of years of dental decline, tooth loss en masse, abscess after abscess, it is not until after this lump remains intact for months does it even seem out of place, more than a simple side-effect of another in many tooth casualties.

Now, try to Google that symptom.

Big lump under skin above teeth below eye socket.

Sooner or later, later in my case, you tire of reading of things that sounds nothing like your problem and get to some skeletal anatomy.

You discover by looking at the screen and feeling your face that the lump is in an area probably referred to as the 'maxillary sinus cavity'.

So you Google for Maxillary Sinus and what you get is a much better group of results, but they are almost entirely medical abstracts. Making it worse, most of the abstracts begin with constant repitition of the phrase 'patient originally presented with..." and then goes on to describe the myriad of misdiagnosis and wasted opportunities.

This thread in here actually has people describing their experiences and a few of them sounded familiar.

I can't just keep going to doctors, getting second, third and tenth opinions until someone gets it right. It's that simple. I just thought it might be of some value, on the off-chance that my story sounded a bit familiar when expanded, to hear that familiar story told from another perspective.

I have never wanted anything tangible and it shows to those that know me. But, yes, I have taken it for what it is worth.

jejrdn said:

All done with radiation....YEY!!
Just finished the last of my 33 treatments on Friday 3/20, the first day of spring!! I decided to keep the mask. I am going to paint it or something and hang it up in my home office. I had mixed feelings when I ended the last treatment. Sad to say goodbye to the team that treated me but excited that this part is behind me. I was very, very fortunate to not get any bad side effects. Didn't lose sense of taste, didn't lose my saliva. I didn't get any mouth sores or mucousa. Didn't have any fatigue or problems eating. I just got a little red in the face and my hair thinned out a little around the back of my head. So I feel really blessed that it was as good as it was. I followed a pretty strict nutrition and execise regiment during the whole treatment process and it seemed to have helped. Now I follow up with the radiation doctor April 15th. If everything looks good then I get turned over to the surgeon and he checks me out to make sure there aren't any signs of cancer. Then I go to the prosthodontist to get fitted for a more permanent looking mouth peice that will have some teeth. So little by little I am getting to feel normal again. Hope everyone else is doing well. Just wanted to give an update. Take it easy!!!

Brian

bany said:

congratulations brian
hey brian, i'm glad you're doing so well. it's so good you had such few side effects. Thanks for the info sirena, you said you'd have your mri results by the 20th, how are things?

dad finished radiation mar. 20th too, this week has been bad. the cancer pain he had in his face is gone, so that's a relief, but the sores in his nose, mouth and throat are making it very difficult for him to swallow. for 6 days now, he's been sleeping steady, we are waking him every 2 hrs so he'll sit up...have an ensure, a glass of water and he goes back to sleep. it's very scary, we've been reassured this is normal and i know everyone says how tired they are....but i never expected this kind of total exhaustion, he just can't stay awake and he's really trying. he's worried about his lungs from lying down so long, he's losing weight and getting very weak. the drs told us it will be about 10 days of this, we have 4 more to go and just trying to keep him drinking.

you're right sirena....cancer sucks

elaine

bany said:

thank you sirena
dad isn't able to talk much right now. i know he feels discouraged and has even said maybe the cancer is back. i read your post to him and it's reassuring that you went through exactly what's happening to him now. i tried to tell him the exhaustion is supposed to be normal, but to hear you describe how he's feeling might encourage him more.

i'm so glad your test came back clear the dizziness must be tough...is it like vertigo? i had that for 2 months and thought i'd go nuts. fingers crossed that yours goes in a month. dad did manage a chuckle at you gagging at the smell of ensure again, he won't be having that ever again when he's through this too lol

elaine

Hi Dad

PBailey said:

Good news Elliot16
Thanks for the reassurance that we can all overcome this cancer, I have renewed hope and would love to hear your story sometime.
Cheers and Blessings,
Patti

jejrdn said:

All done with radiation....YEY!!
Just finished the last of my 33 treatments on Friday 3/20, the first day of spring!! I decided to keep the mask. I am going to paint it or something and hang it up in my home office. I had mixed feelings when I ended the last treatment. Sad to say goodbye to the team that treated me but excited that this part is behind me. I was very, very fortunate to not get any bad side effects. Didn't lose sense of taste, didn't lose my saliva. I didn't get any mouth sores or mucousa. Didn't have any fatigue or problems eating. I just got a little red in the face and my hair thinned out a little around the back of my head. So I feel really blessed that it was as good as it was. I followed a pretty strict nutrition and execise regiment during the whole treatment process and it seemed to have helped. Now I follow up with the radiation doctor April 15th. If everything looks good then I get turned over to the surgeon and he checks me out to make sure there aren't any signs of cancer. Then I go to the prosthodontist to get fitted for a more permanent looking mouth peice that will have some teeth. So little by little I am getting to feel normal again. Hope everyone else is doing well. Just wanted to give an update. Take it easy!!!

Brian

jmatt said:

A novel distraction
I am not a cancer survivor, nor have I been diagnosed. In fact, I haven't seen a 'doctor' in over a decade. I know I really do not belong in this thread, but my medical resources are largely limited to my own exploration. I have poked around here, there, and everywhere - finding things that give me insight, but ironically, this is the first time that I considered posting something in a forum.

Maybe it is the subject matter - a sympton that I can't ignore, but can't really address either. Maybe the posts that I read in this thread lead me to believe that this is a solid group of people that may be willing to offer me the objective guidance I need from a familiar perspective unencumbered by the constraints of the 'doctor'.

If I am intruding, unwelcome, a complete bore... ignore me and accept my apology...

I am finding it hard to decide between being direct to the relevent point of the matter or be a long-winded story teller of tales that are mostly only of interest to me; knowing my tendency, I again apologize for the forthcoming lack of brevity.

(I know you aren't necessarily doctors, but even TV stars get almost as good)

I am a 32 year old caucasian male.

I led a largely medically unspectacular first 18 years of life. I got the chicken pox, a whooping cough, but not much else considering many winters in the cold northeastern US. In fact, I think I only missed five days in my entire school history, perfectly willing to plow through even mildly serious colds and flus.

I was atheletic, played baseball and ice hockey my entire youth, retiring from baseball long before hockey. I can remember as a young kid complaining often of pain in my legs, which were probably correctly dismissed as growing pains. Unfortunately, as I stopped growing, the pain sort of went the other way, but it never did much to slow me.

I never got seriously hurt, other than a blown up spleen that started to hurt bad when I discovered that I played a couple of high school hockey games with mononucleosis.

My mother's insurance was great and I can remember getting my first dental filling at age 17, for a very small cavity - the dentist deciding we may as well get it before mom's insurance stopped covering me.

Oh yeah - my mother was diagnosed with breast cancer when I was ten or eleven, living for nearly ten more years, years I think she was most proud of.

Leaving my teen years, I had gone of to college, but returned home in less than a year. My mother had fought for her own sake a long time ago, now it was mostly for others, and I went back. To be truthful, I wasn't thrilled with living in the Mission Hill area of downtown Boston either; classes all week and 48 hours of work, shifts that ended at midnight.

Around this time, my teeth, which I had never had so much as that lone minute cavity, went completely to hell. Granted, I continued to play hockey, despite increasing knee, back, and neck pain, and probably jarred a tooth or two loose in that setting.

I quickly began working for the State in a great job, so easy and unfulfilling, I feared that I may not get back to school. But, I had the same nice insurance as my mother had and so I began frequenting the dentist.

From zero to sixty, we were doing three root canals a day, twice a week until the insurance ran out. I never did get anything capped or crowned and eventually ended up with a mouth full of metal and holes to the point that I lost track. Two years earlier, I hadn't had a cavity.

At some point in this time, I began smoking, about a pack a day at my peak at this stage.

I had never heard of psoriasis in my life. Ever. So I was a little curious what in the hell was all over my elbows suddenly and seemed to be spreading. The kind dermatologist told me all about it, which wasn't reassuring as it simply seemed to get worse and worse regardless of medicines or sunlamps.

Well, my mother died at about this time, and shortly thereafter I traded in my good insurance and easy job for a couple of part timers and some classes at the State University.

I also continued to play hockey, which was getting difficult because of body pain and this new aggravating habit of vomiting after the first few minutes of intense activity. I have always and for the most part continue to attribute it to either smoking or what is probably a few undiagnosed hockey-related concussions, or a combination of both.

In the meantime, my teeth are continuing to fall apart or simply out at an alarming rate. Over and over, I have bouts with absesses in the gum line, swelling my cheek like a chipmunk. I no longer have insurance at this point, so I usually get away with pleading for antibiotics from an urgent care place so I don't miss work.

Since my teens, I have been well aware of my good friends I. Buprofin and Ty LaNol - taking 800 to 1200mg at a kick three times a day without ever considerin it. At this point, ten years later, I am routinely taking 1400-1600 mg of ibuprofen every two or three hours for tooth and body pain and it really is seeming to help less and less.


At some point in my mid-20's - I am pretty unhappy overall and get a wonderful opportunity to do something that had been a dream my entire life. I packed a bag of clothes, my cat, and flew across the country to the Southwest. I left out the number of parts where I took extended peiods of summertime off to spend at the racetrack. I fell in love with horse racing at a young age and despite being a hockey and ball player, I really always wanted to be at the track.

The place I was headed was not only going to give me a shot to live out a dream, but I'd be in a climate that was recommended more than once for both my joints and my skin.

So it began - I did everything that I never dreamed possible - blew all of my money learning the hard way, eventually training my own and a few for other people, and then training for a leading owner and even winners of major local races.

I thought I had a pretty full life at 25. By the time I was thirty, I felt like I had lived two. Figuratively and literally.

At this point, age thirty, I am already feeling terrible more often than not. Mind you, for five and a half years, I have worked 365 days a year, from 4am until night, and thought it was often incapacitatingly laborious, it never was really work. The work was the stress of the business end.

I still haven't seen a doctor at age 30 since one of those urgent care guys gave me some amoxicillin years ago and it showed. My teeth are throbbing sore constantly and I can't keep the advil in stock. My sore body has been pushed for so long that the rest of me feels like it is falling apart around the original problems.

Nonetheless, I turn 31, and after taking my first 'week off' (spent a week at the ranch with the horses), I went back to work. I wanted to throw in the towel pretty quickly, but I was doing rather well with my small string of runners and so I tried to stick it out. I began taking methocarbamol (robaxin) to help my back as it seemed to work on the horses.

Late in the meet my teeth became unbearable, well, what was left. I had extracted a few myself and even became very adept at 'floating' my teeth, after learning how to do it with horses. However, I didn't eat for nearly a week this time and when my advil stash couldn't help me sleep for three days straight, I took far too many phenylbutazoldin tablets, which left me feeling rather worse.

A friend provided me with some antiobiotics and a couple of vicodin or perkocet or something that was better than advil but wasn't going to leave me like a pile of sludge a la bute.

Though it helped, I wasn't great a day or so later and a former jockey friend gave me a few fetanyl patches. I had never heard of them, and read the warnings and knew I shouldn't take it, but if I was dumb enough to take a half bottle of bute, this was hardly a stretch.

It was the greatest seven says of my body's life to my memory. I forgot what it felt like to get out of bed and be able to move, to go up and down stairs, to get out of a chair in one motion. It was a bit of an eye opener as to just how bad I felt the rest of time. Particularly when that third patch ran out of steam. That was tough.

But the teeth felt well enough to resume enduring the constant mild pain untouchable by my daily 16000mg ibuprofen regimen, of course in annoying 200 mg doses, eight at a time.

About a month later, I had a bizarre attack, much like a mini-stroke (so I learned months later) at the barn. I was in a foul mood anyway and had lost about 15 pounds in a couple of weeks, leaving me at about 120 and feeling weak and rotten.

Every time I drank coffee, which I cannot live without, I vomit. If I take ibuprofen, suddenly, I am sick. So I move to acetominophen on the advice of someone. I can't eat.

I sold four horses, turned one out, and moved one to another barn. I sold almost everything I had at a loss to cover the bills and went back to the ranch again.

For the first few weeks, I couldn't eat well and never drank coffee. I also tried not to take any NSAID.

I felt better and better with rest and a month later, went back to the track, but without the horses - doing a different, but almost equally enjoyable job. It was also much easier, a day off, not nearly as much physical work, but the same bad pay that never left enough for anything but gas and a little food. And cigarettes - I am now, and have been up to almost two packs a day for a few years.

My new career ended rather abruptly, things like that happen in racing, so I went back to work for someone working with the horses.

I could barely do the work. But I forced my way through it day after day, and quickly I was back on full tylenol tilt with a healthy splash of ten or twelve horse robaxin (750mg).

Unforunately, after two and a half weeks, payday never came, so neither did I. That happens on the track as well. I returned back to relaxing on the ranch and a few days later, I turned 32.

A few days after that - I had another of those 'attacks' - like a mini stroke, or perhaps a heat stroke, it was hot and I was too, but I was all but out, paralyzed, and took a good three days to get my wits back.

But alas, not to be quelled for long, I took a string of four horses back to the track a few weeks later, determined to prove that only I can kill me, I guess.

This was about six months ago.

In November, after a protracted bout with my teeth that led to a rather gory manual extraction, I must have appeared particuarly disgusting as I was basically dragged to a dentist.

My first visit to a doctor or dentist in... a decade or so...

The man was appalled to say the least and refused to pull the bad teeth, counting out 14 teeth that needed pulled and referring me to an oral surgeon. He was kind enough to give me amoxicillin and... ibuprofen... thanks.

I actually made it to the surgeon and after unsucessfully attempting to do a fancy panoramic x-ray for an hour, had three of the teeth pulled based upon the basic poke till it hurts method. The work was being done with money from a benevolence program as I literally had no dollars and fewer cents.

My mouth felt a lot better within a few days and in a cruel twist, of my four horses, three got hurt within two weeks and I sold the other. I continued to work a little for a friend, trying to find more work without luck. I also began feeling pretty terrible again, finding it increasingly difficult to go without tylenol and robaxin non-stop.

At this point - it only makes sense to go to the ranch, I can look after the horses there and get fed and bedded at least.

So I do, and within two weeks, by the first of this year, I can barely function at a useful level.

I might consider the distinct reality of depression to explain away a herd of either new or worsening symptoms, but whereas most people are usually trying to convince themselves otherwise, I seem to try to make a case FOR it and can't really do it. At least not to my satisfaction - something is new and it is not new and wonderful.

I have always had difficulty with nausea, vomiting, and to some degree, heartburnish troubles - I have always figured I have some form of ulcer from the forty trillion milligrams of NSAIDS I polluted myself with. But suddenly, it is all much worse. After a period of eating extremely well when I first returned, I can barely eat anything, and when I do, it rarely hangs around for too long.

Yet, I don't show much weight loss. I feel like I'm 110 pounds, but look like I do when I'm 140, and I'm only short of that by a few pounds on a scale. I feel swelled up, but am so thin naturally, that I can't even convince myself of it, much less someone else. I look normal, but feel super light.

I have been lightheaded, dizzy, and demoralizingly and increasingly weak. I mean, it is hard to make my legs move at times. I can not stand up in one motion most of the time - it's up to a hunch, then straighten the back.

My chest and abdomen are consistently inconsistent in delivering bouts of daily pain, though it seems like mere rib stitches at times. However, I can virtually suffocate myself with coughing fits by applying just mild pressure at my collar bone near the center of the chest, where there also seems to be some heat and swelling, or boniness, or something.

My neck has little range of motion anymore, but that isn't new. But, instead of merely feeling stiff like it needs a good crack, often it just feels obstructed by swelling. My neck looks thick for as thin as I am and even my shoulders seem oddly muscled, but I can't really note any glaringly obvious lymph type swelling (though I may just not be very sharp)...

AND SO What does any of this have to do with the rest of this thread?

Okay... I may have had it forever with my tooth pain and general swelling and soreness, but I never really noticed it until I started paying a little more attention to myself -

I have a gumball machine gumball sized lump in what I believe to be known as the maxillary sinus cavity. Of course, my first thought was a tricky abscess - going up through the jaw bone rather than out the gum, but it has been there for months. I've had a lot of abscesses in my mouth and soaked many on my horses and they just don't last that long in one constant immobile state. I figured it was a result of one of few remaining completely broken teeth getting up in there, a root or something, but the tooth as actually hollow, in fact the hollowness is about four times its original size.

So - this is one of the few places where I have read anything other anecdotal tales of problems like this.

In recent days, as I have begun to feel worse and worse, odd things and just more things continue to surprise me...

My psoriasis is in retreat mode. I have been through wars of all kinds with this scabby body and my skin has NEVER gottent better, in fact, it has seemingly gotten worse with every year. Now, within a couple of weeks, I have half the skin coverage that I had and by all accounts, it seems like it wants to go away completely - it's just a long process.

I woke up with a herd of gray hairs on my head and in my stubble a few days ago. I never had even one, and every day, I've got more and more. Maybe it's a coincidence, but.

I have had terrible, terrible back pain the last ten days, high in the back, almost directly across from the spot in the collar bone one my chest where it feels like the stakes are pounded in to me.

Okay, okay...

I have read a million of these forums and I know I should be at the doctor, but I have no money. Zero. No insurance...

...Hear me out...

I will make it to the doctor, if I have to borrow money, if I can go in there and tell him what I want done. I have gotten to the point, from my own experiences, those of others, and frankly, a lot of what I have read that I am confident that I need to really almost know what I want to find out that which I do have or do not have and begin looking from there.

I can not go back and forth to a doctor. I may get one shot to get it right, and if I can feel like I have a legitimate reason for going there, I need to get done what I need and not waste one minute or dollar on whatever crap the pharmaceutical reps are pushing this year.

I always said that I would wait for a smoking gun - like coughing up or puking up blood on a regular basis, and other than a few spotty incidents that were most likely my teeth - I haven't been able to walk in and say...

"Doc - You got one chance to get this right - I have this and that and this and that, let's start with this."

I have a strong feeling that I have been hosting a nice infection for quite some time, the feeling of swelling, constriction of my chest, and long, long history of tooth problems has me considering the reality of some pleurisy accounting for some of my problems.

But, the face lump needs to be addressed too if it is a potential problem, and most of these urgent call types, hell, from the sounds of it, even the specialists aren't too quick on the draw.

The fact is - If I break down and borrow money or something with the intent of getting a blood test and chest x-ray and I get bullied into something else and go home with Rx for some crap that I'll never even fill...

...It'll be another decade before I consider a return visit. Well, easier said than done. I remember thinking that I wasn't going to a dentist ever again ten years ago.. chuckle...

Too back that panaromic xray machine was broke the one day I went...

If anyone read this and wants to reply, God love ya... if not, then I'm amazed you read it. Thanks for listening to my thoughts in any event...