You Want a Piece of Me??? (NSFD--Not Safe for Dinner--really gross)

OK, I have to go to bed early tonight, but I had to update you all, because something very creepy happened to me this morning, and it's too fun not to share right away.

Now, this has happened twice before, but it never gets old. This morning, I was doing my usual nouching routine.* Usually, I spit out a bunch of schumtz and start my day. However, this morning, like a fragment of pottery, a little piece of bone showed up in my mouth and clattered on my teeth. It was dead--like a black and brown, crispy bit of sponge.

As I have said, this has happened twice before. I have had an absurd amount of radiation to the skull just behind my nose over my life, and, at some point, a chunk of skull just called it quits. Now, pieces of dead skull occasionally drop off, and I spit them out. It's almost as disgusting as chewing tobacco.

But, this is never routine. The part of my skull that got so fried is a superhighway of important nerves and arteries. I worry that someday, some chunk will come off and take something important with it. Maybe it would be an artery, which would be a dramatic way to go. (If that has to happen, I hope it happens at a party just after I said something really funny. What a performance!) The other possibility is that it would take out a bunch of nerves. That would make my uniquely sexy face even more suave than before, all saggy and 'thpeaking lige thith.'

Now, there are actually much more immediately important things going on in the family right now, but a little bit of skull for breakfast does make one a bit self-centered for a while.

This dog wishes you a happy dog day!

Ooey, Gooey: the Revenge of the Nosebleeds

Today, the cliff shall be unhanged! It's a little anticlimactic, since we're not talking about horrible tumors or immanent death, but it's kind of gross.

As I wrote on the night of the 12th, I was to see the amazing neurosurgeon who had tried to plug my nosebleeds and then see a very well-respected neurologist and stroke expert whom I will call Lord Strokes (This is not at all fair. He's a very nice guy who, in no way resembles the evil overlord of the First Order.)

So, on Friday, the 13th*, Kathleen and I drove downtown to the O'Hair Medical Center for the appointments. First, we saw Lord Strokes.


Meeting with Lord Stokes

I hadn't seen Lord Strokes since 2006 when I had my first stroke, so we had a lot of catching up. I had sent him one of my own patients recently, and we discussed that too. The good news is that there has been a big study comparing doses of aspirin from 50 mg to 1300 mg per day for the prevention of stroke. There was NO difference except that the incidence of stomach ulcers and kidney damage increased with dose. So I can get by on a low dose which will cause less of a risk of nosebleeds.

Then, it gets complicated. There are two likely causes of my strokes.

One of them is absurd amount of radiation to my head I got for my cancers. Sadly, this was not ruled out when the neurosurgeon found no narrowing of the arteries of my head. The effect of the radiation is on microscopic vessels called arterioles. This is not visible until you cut the patient's head open and collect some tissue. I'm not really up for that. But I think this is the most likely cause. I received so much radiation that radiation oncologists practically faint when they hear about it. Also, the two strokes were located close together within the radiation field.

However, that still leaves the issue of the little hole between the top two chambers of my heart (patent foramen ovale, or PFO).** It is possible that a small blood clot found its way from the right side of my circulation, through the PFO, into the left side of my circulation, and to my brain. Even if it's not the case, with a PFO, my risk of stroke is 1.5 % a year. If I get the PFO closed, that risk drops to half a percent per year.

Closing the PFO is relatively easy. They spike my crotch again (which is getting to be routine), and another catheter is threaded up, this time through the veins, and into the the right side of my heart. There, they would open a little umbrella-like device which would block the hole. I am in no hurry to get this done, but I expect I will get it some day.


Meeting with the Neurosurgeon

So, finally, the time came for the follow-up with Dr. Crotch-Spiker (provisional, inappropriately disrespectful nickname for a doctor who is at the very top of his sub-sub-subspecialty and is a good man). We told Dr. Crotch-Spiker (whose parents' last names were Crotch and Spiker) that I was still having nosebleeds. He shook his head sadly. The intense headaches and fevers I had after the procedure meant that he could not repeat it without risking permanent damage to the tissues. I am going to have to live with the nosebleeds.

That said, it's not so terrible--a lot better than it was before the procedure. Instead of erupting with gushing bleeds in the middle of patient appointments and having to rush to ENT for cauterization, I have a slow trickle that does not even come out until I have gone a few hours without rinsing my nose.*** I just have to remember to rinse in the middle of the day to avoid sneezing bloody goo in the afternoon.

And that's the end of this particular adventure. Another annoyance, but not the end of the world.


Be well,

Tom


* No, I don't believe that means bad luck. If there were truly an unlucky date/day-of-the-week combo, it would be Monday, the 13th, wouldn't it?

** See Tumoriffic, original blog, August 7, 2007 for more on that: http://www.tumoriffic.org/Part%20III.htm

*** Technically, this procedure is known as a 'nouche,' for nasal douche. It is done with a squeezable 8 or 16 oz bottle filled with salt solution. I do it at least 4 bottles at least twice a day and a lot more when I have an infection.

You too can nouche. I strongly recommend it for anyone with sinusitis or cold. The bottles, made by Neilmed, are available at most drugstores. You should use distilled or boiled water and mix it with a little bag of salt and sodium bicarbonate formulated to match the salt in your own blood and snot. (That way, it doesn't sting when it goes in. Pure water really hurts.) Neilmed makes these bags, but CVS, at least, now sells their own bags, which are much cheaper. You don't have to do it as much as I do, but it should help with cold symptoms, help prevent colds from becoming bacterial sinusitis, and make your bacterial sinusitis go away faster. Happy nouching!

This bird never gets bloody noses.

Flashback: When to Ignore Meningitis Symptoms

This is going to be a confusing post. My last post was on the evening of July 12, just before the follow-up appointment to my June 6 procedure. But I still haven't told you about the procedure itself and what happened over the following days.

Rewind to Tuesday, July 6. (For context, look at my post of June 5.)

That morning, it was time to get my second spike in the crotch. Kathleen drove me downtown to O'Hair Medical Center, and we wended our way through a maze of corridors until we reached the Spike-in-the-Crotch Department. Contrary to my childhood memories, the procedure was not as bad as it sounds. I would not want to do it for fun (not that there's anything wrong with that), but, with the right sedatives and pain killers, it's tolerable, and, unlike the week before, I don't remember it at all.

Once again, the neurosurgeon (whom I have yet to give a silly nickname) threaded a catheter up through my femoral artery, past my heart, and into the arteries in my nose. This time, it wasn't just to look around, but to take care of business. Zillions of tiny arteries had blossomed in my nose--far more than I needed for normal nosing. The neurosurgeon released tiny beads that blocked off the extra arteries. I don't remember any of it, but the neurosurgeon told me he had a lovely time.

Once I left the recovery room, I was rolled up in a wheelchair to the neurological intensive care unit. There is a small potential for a stroke after such a procedure, and they thought it would be fun to watch.

If you ever have reason to go there, I highly recommend the O'Hair Medical Center Neurological Intensive Care Unit. Four stars--the fanciest I have ever worked in or stayed as a patient. Unlike the last one I where I was a patient, I wasn't miserable and hallucinating, but there is a lot more to recommend it. It is clean and modern-looking. The rooms are singles, and pretty big. They are closed off completely. (The staff could look in through the window that covered one wall, so it did lack a certain privacy.)

It just to happened that my nurse and student nurse had no other patients that night, so they fussed over me even though I felt perfectly fine. They wheeled me down for an MRI--a fun trip, and we laughed and traded medical war stories. They even went downstairs to the lobby to get me something from the Au Bon Pain (which translates to Oh Bone Pain) because the kitchen was closed. Then, I went home in the morning and slept much of Wednesday.

On Thursday, June 8, I went back to work at the office. I began to get a little ache in my face and a little bit of a bloody nose (which defeats the point of the whole procedure). It wasn't terrible, but it wasn't what I expected. So, near the end of the day, I called the surgeon's office and asked his nurse whether this was normal after the procedure or whether I should go to the Emergency Department. She said I should. I was skeptical, but, after work, Kathleen and I went all the way back to O'Hair.

That visit to the ED was kind of fun, if inconvenient. One of the docs there liked to tell doctor-lightbulb jokes like, "how many psychiatrists does it take to change a lightbulb? One, but the lightbulb has to want to change." The neurosurgery, and ear, nose, and throat staff were unimpressed. Apparently, this was not so unusual after the procedure I had had. They sent me right back home, and, the next day, I went back to work with a little ache in my face. I still don't know why I was supposed to go to the ED in the first place that night.

Then, Friday night, I started to get a really bad headache--the worst I had ever had, and I had a temperature of 103. (Friends not from the US, don't worry. I wasn't boiling alive. In Celsius, my temperature was about 39.) We got a little freaked out and called the O'Hair neurosurgery coverage. They kind if yawned but said I should go to the Emergency Department. They said I didn't have to go all the way downtown this time, so I went to a nearby hospital where I had worked but never been a patient. That's always nice.

They seemed slightly more excited, but once they talked to the neurosurgery coverage at O'Hair, they yawned too. They sent me home, and I tanked up on full dose acetaminophen and ibuprofen (known more commonly by their brand names, Tylenol and Motrin).*

I slept all day the next day and had an even worse headache and a fever. This time, I had neck stiffness, and it was painful to touch my chin to my chest. This was kind of scary, since, when a patient comes to me with these symptoms, I send them to the emergency room, and they get admitted to the ICU.  These are the symptoms of meningitis. So, Kathleen called the covering neurosurgeon. He yawned, but he actually explained things better this time.

Some of the blocked arteries had been doing more than just causing bleeds. They had been feeding tissue that was getting inflamed after losing some of its blood supply. That's apparently something that can happen after the procedure I had, and it can feel like meningitis.  So, I just took the big painkiller combo (with an acid-suppressor--omeprazole--to protect my stomach) for a few more days until everything stopped hurting. It seemed to be a happy ending. But the story was to continue.

Next: Ooey, Ooey, Gooey--the Revenge of the Nosebleeds.





* This is actually a very good combo for severe pain, and I recommend it too my patients. Acetaminophen is unrelated to all of the other over-the-counter pain medications, so it does not conflict with any of them. You can take it in combo with ibuprofen. Just remember that acetaminophen can be deadly for people who drink three or more servings of alcohol every night, and ibuprofen might burn a hole in your stomach or blow out your kidneys if you take it for more than a little while. In clinical trials, they do as well as narcotics.

I met this dog about a month later. He's not really relevant, but he's awfully cute.

Drip, Drip, Drip

OK, first of all, I have had writer's block. Somehow, a chronic nosebleed and the threat of stroke are as funny to me as impending doom from an exotic cancer that ends up being misdiagnosed. Why? I have no idea.

I have a long story to tell, but that will have to wait. I am already staying up too late, and I have to get up early tomorrow. On the other hand, there will be more news tomorrow, and I love a cliffhanger (although, it's really hard to beat 2005's "will he lose his right eye or not" moment)!

Briefly, the surgery did not entirely work. The story of what happened later is a laugh riot for another time, but I have been left with a slow ooze of blood in my nose that gradually builds up and then spills out after a few hours. This leads to such great moments as the other day, when I sneezed bloody snot on my shirt in front of a patient. (He had a story to tell when he got home.)

Meanwhile, I can only take half an aspirin a day if I don't want my nose to be a bloody spigot, and that leaves my vulnerable to another stroke. It might not be the fun kind like the first two. I could be driving or something.

So, tomorrow, for the first time since the surgery, I will see the surgeon again. Maybe he will have another suggestion as to what to do. He will probably want to repeat the procedure. That would mean another two stabs in the crotch followed by all the joys that followed them last time (to be described lovingly in another post). After that, I see the stroke guy and hear what he's got to say. That'll be a real hoot too.

Until later,

Tumoriffic Tom

My friend, Ollie the Gray Seal, says it's all going to be OK.

Best Angiogram Ever!

I have to admit, I was not looking forward to last week's angiogram. Some people are into that sort of thing, but not I. That said, last week's angiogram was the best I ever had. The first time was when I was 11 and getting worked up for the original tumor. I remember it as a distinctly unpleasant experience. This time was much better than I expected. The surgeon was really smooth with the arterial catheter. Other than the spike in an unpleasant place where they inserted the arterial catheter, it was kind of groovy. Or was it just the better drugs?

The results were interesting. First of all, there were the expected dense clumps of arterioles (tiny arteries) in each nostril. Those are why I have been getting nosebleeds since July, it means there is a solution to that. But, also, he did a general survey of arteries in the whole region.

Oddly, I have no atherosclerosis (harding/narrowing of the arteries). On the one hand, this is good news. Who, other than a pervert, would actually want to have atherosclerosis? On the other, it raises some annoying questions. I have always assumed that my two strokes were due to atherosclerosis of the arteries of my brain from my radiation therapy. That does not look to be the case.

The next most likely source of the strokes is the tiny hole between my atria (the top two chambers of my heart). This is a very common defect. 20% of everybody is born with it, and it is usually harmless. However, a large percentage of people who have unexplained strokes have this defect.* So then, we have to consider closing the defect, which can be done through yet another--wait for it--angiogram! I'm going to be a real pro at these things!

Anyway, last week's angiogram was just to get a map of my arteries--the appetizer, if you will. Tomorrow, I go for another angiogram, and this time, they mean business. They're going to release material (a combo of tiny beads or superglue) that will block off the extra arterioles that are the source of the nosebleeds. The downside is that there is a risk that too many arterioles will be blocked, and my nose will fall off. Well, actually, not fall off, but, still, badness. It's pretty unlikely, though. This interventional neuroradiologist / neurosurgeon does about 300 of these a year, and his record is excellent. But this is the sort of thing that keeps me up the night before a procedure.

On the bright side, if something bad happens, I'll be inspired to write more, and I like writing. On the brighter side, look at that adorable dog picture at the bottom of the post.





* It's called a patent foramen ovale (which sounds like the name of some sort of nobleman or other), aka PFO. The theory is that a tiny blood clot forms in venous (vein) system and makes its way to the heart. Then, somehow, it passes through the PFO into the arterial system and up into the brain, causing a stroke. This is weird, because the pressure is much greater on the arterial side, so you would expect stuff to go the other way, but there it is.

Artery Imitates Lifery

Get out the maracas, everybody! It's time for a nasal angiogram!

Why, you ask, would anyone want to a silly thing like that? What kind of nut would allow a doctor to stick a tiny tube into his femoral artery and thread it all the way through his major arteries and into his nose? This kind of nut, of course! Because I like it that way! Plus a real reason--bloody noses.

It all began last July, when I got an orbital cellulitis* under my right eye where I have no orbit. (See, Got the Stinkeye.) One of the major symptoms of that was nosebleeds.  While most of the infection went away, some remained in the back of my throat. From July until just a couple of months ago, I was on many different antibiotics, none of which worked for more than a week.** The infection finally cleared up a couple of months ago when I took my ENT consultant Hygeia's advice very literally and put gobs of antibiotic ointment up my nose every day. It was so much that it slipped down the back of my throat, directly attacking the site of the infection.

However, even after the infection got better, my nose kept on bleeding. And I'm not talking about a drop here and there. I'm talking about fairly exciting bleeds that sometimes might last for an hour until I had an emergency visit with a specialist to get it stopped. My nose would bleed at awkward times, like, for instance, when I was seeing a patient. I don't think I ever actually bled on a patient, but I was close a few times.***

This was made worse by the anti-platelet medication (kind of like a blood-thinner) that I take to prevent another stroke.**** This medication (Aggrenox) prevents strokes by making harder for blood to clot. Unfortunately, it also makes it easier to bleed. So, I have been going without Aggrenox for months. This is not a viable long term option. Strokes suck, even minor ones I like I have had, and the next one might not be so minor.

So, a few months ago, Hygeia suggested that I get this insane procedure to stop the bleeds. I procrastinated until I told Kathleen about it, which meant that it would actually get done.

The first part of this starts 6 hours from now. In the morning, this very specialized specialist will poke that a tube into my femoral artery, thread it through the major arteries all the way to the blood supply to my nose. He will then inject dye which will be visible by x-ray and allow him to make a map of the microscopic details of my blood vessels.

Some time in the next few weeks, after he has figured out the source of the bleeds, he'll do another angiogram (to me; unfortunately, I can't foist this on anyone else) and block the tiny blood vessels that are causing the nosebleeds with the equivalent of superglue. That has to be the hardest way anyone has every come up with just to sniff glue.












* which has nothing at all to do with planetary motion or unsightly lumps of fat around the thighs and buttocks. The orbit refers to the bone of the eye socket. Cellulitis is an infection just under the surface of the skin. An orbital cellulitis can be highly dangerous. The orbit is a relatively closed space, so drainage from the infection may get cut off, increasing pressure on the eye, potentially causing blindness, and so on. Lucky for me, my right orbit isn't a closed space anymore. They took the bottom of it out in 2005 when I had the osteosarcoma. See? Every cloud has a silver lining!

** Every time you use antibiotics, you are potentially breeding antibiotic resistant bacteria. Perhaps, if all of these antibiotics create an invincible superbug in my body, they can name it after me.

*** I'm fairly blase' about nosebleeds. I have had them fairly often since my childhood nasal cancer. I even carry a little clamp in my pocket that I can put on my nose to put pressure on it so I can still use my hands. I'm told it's very attractive.

****I've had two little strokes. For those stories, see Different Strokes for Different Folks in Tumoriffic, August 14, 2006, and I'll find the other link later.

Got the Stinkeye

It's been quiet. Too quiet. Until right now.

It has been 10 months since I definitively learned that I did not, in fact, have an exotic, aggressive tumor that would kill me within 2 years. Life has settled down to the ho-hum existence of your average northeastern US primary care doctor living in the End Times. What was I to do for excitement?

So, this summer, I had been getting a runny nose, a cough, sneezing, and a bit of bloody nose. It didn't seem like anything special, but it went on for several weeks and did not respond to allergy treatments. So I stuck a culture swab up my nose, sent it to the lab, and prescribed myself some antibiotics. *

The culture grew 'normal skin flora.' Generally, when they find this in a culture, they throw it out, and that's just what they did. And I didn't get better. I went to see Hygieia. It indeed looked infected. She cultured it again, and I spoke to JD of infectious disease (ID). He put me on two antibiotics.

Those two antibiotics did seem to help some, but they made me ill, and, three days in, I woke up in the middle of the night with a fire alarm in my ear (tinnitus from hell). That was minocycline. Not doing that again. So JD switched out one of the drugs for another. But the new combo didn't seem to work, and the other drug, rifampin, turns all one's body fluid orange, which can be a real downer.

Meanwhile, about a week ago, whenever I coughed or sneezed, it felt like my right eye and cheek were about to blow off my face. On Sunday night, it crossed my mind that this was not actually normal, even for me.

The next day, Hygieia squeezed me into her schedule. (I guess she found the idea of my face bursting apart disturbing too.) The inside of my face was not looking better.** So she got another culture and ordered a CT scan (also because that spot hasn't had enough radiation lately). And the CT scan showed...another trophy for my catalogue of experiential medicine! I have orbital cellulitis.

What's orbital cellulitis, you ask? Sounds like something Chris Hadfield (http://chrishadfield.ca) might get. But no. It's an infection in the tissues surrounding the eye. Usually, it's quite painful, because the tissues around the eye usually form a closed space that can build up pressure. Luckily (Heh!), in my case, the orbit is not a closed space. It's wide open to what should be bone and sinus, but what has, for the last 10 years, been my facehole.

Know what's even more special? That culture seems to be growing Enterococcus faecalis! To put it delicately, that's a bug that one more often finds in the hole on the other end of things. This is so special, that only two patients in all of medical literature have ever had such an infection! *** And I bet neither of them had a facehole like mine! I win!

So, last night, after all of this, I called up my parents, and I asked, "are you bored? . . ."




_____________________
* Before you give me the a hard time about my treating myself, I am in frequent contact about these things with my primary care doc and my ENT doc, Hygieia, the Greek goddess of otolaryngology. Dr. Bug, head of infectious diseases at Ben and Jerry's Hospital, is impressed that I have been able to keep the inside of my face from turning into a foul sewer of infection for the last 10 years given what cancer, surgery, and radiation have done to it. (I guess that 10 year streak is over.)

** Meanwhile, her lab had tossed the second culture, because it too grew 'normal skin flora.' This made Hygieia very mad, since normal skin flora do not belong on the inside of my face.

*** https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5056554/

He's not bored.