Basal cell? No thanks, I’m stuffed.

Back in May of 2007 I’d had a little skin cancer mole removed from the side of my head. In case you get one of those, here’s what happens: a slice of your skin is carved out and analyzed. If cancer is found in the slice, a little more of you is sliced out and so on until the slice is cancer-free. Mine was all removed on the first slice because of early detection. I was bandaged up and fitted with a very fetching black sweatband to hold the bandages in place. I was told to keep the sweatband in place for 24 hours. That made for a long ride home hoping I didn’t see anyone I knew. Anyway, it cleared up nicely and today there’s no sign of the digging around that took place on my temple. However, because basal cell carcinoma (skin cancer) was discovered, it was recommended that I return every six months for check ups.

I visited the dermatologist sometime during the summer of 2008 while all this tumor/aneurysm stuff was going on and sure enough there was another spot of cancerous stuff, this time on my leg. The difference this time was that I was on Plavix, a blood thinner, to try to keep any thick pounding blood going into the aneurysm. The dermatologist couldn’t dig out the cancer because I suppose I’d just bleed and bleed because of the Plavix. Instead, he prescribed some cream called Aldara to apply five times a week for six weeks. I’m no dermatologist but the leg now looks fine to me, the cream seemed to do the trick. I’m off the Plavix now so I go back to the dermatologist on New Years Eve for my next check. Maybe I’ll have a clean bill of health by the New Year.

Coils, take three

There was no sign of a blood clot when I had my next angiogram on July 23, 2008. The doctor said the aneurysm had shrunk from 5mm to about 2mm and so the unprotected area was now miniscule. Despite trying for several hours to get a coil in there, he was unsuccessful. This time he told me to wait four more months and to then get a combination MRI and MRA to take care of both the tumor and the aneurysm at the same time. Sometimes, it seems like this will never end.

On the bright side, I had more excellent nurses to help me through this latest visit. Linda, a Chinese lady got me through the night and Ellen and Kristen looked after me in the day. It was Kristen’s first day as a nurse but she acted like she knew what she was doing. Ellen was a 25 year old still trying to figure out the bigger stuff — when will I marry?, SHOULD I get married?, why did I just move in with my boyfriend when I immediately want to move out?, things like that.

When I finally sat up in bed and mentioned that I felt like crap and probably looked like it as well, Kristen kindly said, “You’re the best looking guy on the ward!” Considering most of the other men were stroke victims and doing their fair share of drooling, I’m not so sure it was a compliment.

Coils, Take Two

I had to wait six weeks before the next coil treatment to give my body an opportunity to produce a film over the stent that’s stuck on the artery wall. This allowed the mesh area to become smooth and made it easier to get the next catheter around the stent on its way to the aneurysm.

I went to the Washington Hospital Center (again!) on March 25, 2008 for my second coiling treatment. The results were 90 percent successful. There were four doctors scrubbed and ready for me that morning, some of the best brains in the business and a highly unusual number I’m told. They put more coils into the unprotected lobe but couldn’t get one in the last little bit. Going too far was what got us into trouble last time so my latest doctor decided to quit while ahead. He told me to wait three months to see if a clot could form in the unprotected area — a possibility — which would provide the protection to make me a hundred percent perfect. Well, OK, maybe not perfect, but you know what I mean.

“Surgery is the gold standard.”

The second day is a bit of a blur but I remember being visited by family and being moved from the ICU to what is called intermediate care. Intermediate care means the nurse comes to see you every two hours instead of every hour. Somewhere during that day I was visited by my tumor neurosurgeon who announced that, “Surgery is the gold standard.” Loosely translated that means, yes, we messed up and we’ve got to try to fix the problem and screw the coils, I recommend we just slice that little bald head of yours wide open and stick a clip on the damn thing. 

That doctor’s next recommendation was to see a guy who could do both the surgery and the coil treatment and let him see the pictures and make a decision. “Oh, and by the way,” he said, “you still have an unprotected aneurysm (or at least half of it is unprotected) so don’t do anything in the meantime to get your blood pressure up.” 

Nine days later, on February 14, I was back in a doctors office to hear what this new guy’s verdict was on my future. To my surprise — despite the “gold standard” talk I’d heard earlier — this doctor said he thought he could redo the coil treatment successfully. He suggested that surgery would be the most traumatic experience (I’m with you there, doc!) and therefore a last resort. He explained that could do both procedures and he’s one of only about thirty neurosurgeons in the country that can do both. Well, OK then. He also said, if he’d been performing the first treatment on me and got a coil stuck in the stent, he would merely have stuck a second stent on top of the first and gone home. Now why didn’t my first doctor know that?  

The first guy had called another surgeon for help while he was working on me but the person he called was also in surgery and couldn’t get to the phone. As far as I know my guy never did get any outside assistance. So I asked this latest doctor, “If you need help will you be able to get it? Can we do our best to get a guarantee on this?” And he looked at me and said, “I am the help. People call me for help. My mentor occasionally calls me for help.”  I say again, well, OK then.

 

24 hours in the ICU

I suppose it’s better than not waking up at all, but the trouble with waking up in Intensive Care is that you’re awake in Intensive Care. They have you tied up and tied down all at the same time. I had an oxygen mask on my nose and mouth effectively stopping any meaningful conversation on my end. I had the strap around my upper arm that inflated about every five minutes checking my blood pressure. I had two similar contraptions, one around each lower leg that also inflated but every two minutes. I know this because I was awake for every second of the next twelve hours which afforded many opportunities to time the damn things. Had I been able to sleep it would have been for a maximum of 120 seconds. The legs straps were to avoid blood clotting and when they inflated it felt like two vice grips clamping down on my calves. I also had to keep my legs stretched out straight for the next six hours. The hours ticked by so slowly, eleven p.m., midnight, one a.m., finally, finally, two a.m! I can bend my knees! Such relief. I swear blood clots could not have been more annoying. 

I was hooked up to multiple intravenous drips providing me with a cocktail of exciting stuff like magnesium, saline and some other fluids to keep me from flat lining. The nurses knew what I needed because it seemed like every few minutes one of them was sticking me with a needle to get more blood out of me, send it to the lab and wait to hear exactly what I was lacking. What I really needed was a long, cool drink of water but no! The lab never mentioned water. You’re in the ICU, where the best you can hope for is, eight hours after you arrive, someone waves a few ice chips in front of your mouth. It was mentioned to me on more than one occasion that “you don’t come to the hospital for rest.” Every hour the nurse would show up just to make sure I hadn’t drifted off for thirty seconds or so, and she would ask me interesting questions like, “Who is the President?” and “Where are you?” I wanted to hear ”What would you like to drink?” but no, I was asked, “What is your wife’s name?” Somewhere around five in the morning I would see the nurse approaching and I’d say, “Bush, Washington Hospital Center, Carol.” just to break it up a little.  

But don’t get me wrong, the nurses were wonderful. They do a lifesaving job — literally — from 7 to 7 under some difficult circumstances: people moaning, people in a coma, people that were behind closed doors with tuberculosis so you had to wear a mask before you could go in the room. Compared to most folks that end up in the ICU, I was pretty much a nothing case –  I was there more out of hospital policy than a real emergency but those nurses still paid an unbelievable amount of attention to me. My hat is off to them.

Some days are better than others

Here’s how the coil treatment works. The surgeon makes a hole in your groin about the size a pencil would make if you were to decide to commit suicide by lead poisoning. Into that hole — and into a blood vessel — goes a catheter which is guided via the arteries all the way to the aneurysm in the head. An aneurysm that’s not wishing to be a lot of trouble will have a nice small neck and the catheter then squeezes inside the bubble. A very soft, malleable platinum coil is sent up the catheter and deposited inside the aneurysm. Because it’s so soft, the coil will curve to take the shape of the bubble’s wall and rest there, providing protection against the blood. The doctor might stick at one coil or he might put two in the bubble if he thinks extra protection is needed. Then he gets the catheter out of there and we all go on about our business. That’s the theory anyway.

By six o’clock of the evening of February 4, 2008, the same day my neurosurgeon saw the MRA, I found myself in a bed in the Washington Hospital Center (WHC) having blood taken from me. Neurosurgeons tend to specialize and mine was a tumor guy so he’d recommended a coils fellow at the WHC. Tumor guy said coils guy was a “good doctor.” I met coils guy the next day. He had a cold and did a lot of sniffling. Plus, he seemed to be a bit of a giggler. He didn’t exactly exude confidence but as I’m already in a hospital bed it’s a little late to be backing out because the guy seems to be a giggler. I’ve just had at least two hours of restful sleep during the night, had vials of blood removed, had my blood pressure taken 59 times, answered 73 times that no, dammit, I’m not allergic to any known medicines, and I’ve signed away any chance of suing anyone or any hospital. Apparently a few sniffles aren’t going to stop this train.

Eventually, I was wheeled down the hallways to the treatment area where I met my green-eyed anesthesiologist. About six hours later I awoke to the sight of those eyes peering down at me from close quarters, in fact “green eyes” were my first words. I’m sorry to say that my wife’s first words to me were, “The treatment was not a success.”

The next fairly clear thought I had was in the intensive care unit. I had a nurse on one side of the bed and my wife and doctor on the other. The doctor asked how I was feeling and I made a thumbs up motion — not such an easy feat when you’re attached to all the equipment in an ICU. Anyway, the doctor emitted a loud sigh of relief that I could still function — well, my thumb could. I discovered later, that he was concerned that I might have lost all mental capacity due to the operating room excitement.

The “excitement” went like this: my aneurysm did not have that “nice, small neck” I alluded to earlier. It has a big, fat neck and it needed a stent placed across it to keep the coils from floating out into the artery.  It also was not one bubble but two, the bubble was a heart shape.

The stent, basically a piece of mesh, is put into position first. The catheter is then eased through the holes in the mesh until it’s clearly through and hovering inside the aneurysm. A coil is injected into the aneurysm and it settles into position around the bubble wall. The doctor then turned his attention to the second lobe and sent off coil number two. I was told later that at this point the doctor was 95 percent finished. All he had to do was extract the catheter and we’re finished. The trouble was, the doctor thought he could do better. He decided to insert another coil — for all I know, he may have had plans to insert a fourth coil as well — I’m not sure, I didn’t ask him.

By the time he’d decided to do this, the catheter had moved back a little and was now just about even with the mesh instead of being well into the aneurysm. The coil was sent into the bubble, but this time, instead of the coil completely entering the lobe, it got caught on the mesh. That’s not a good thing so the doctor tried to free it from its entanglement. He pulled on the coil and the entire stent broke free of the neck. The stent floated back down the artery a little and settled on the wall of the blood vessel. The tangled coil came free and the doctor was able to remove it back down the catheter and out of my body. Also about this time, coil number two that had been resting comfortably in the aneurysm decided to come out and see how things were out in the artery. The doctor also managed to catch that coil and extract it from me. All that remained inside me was one coil and the stent.

About five and a half hours had passed since I went into the treatment room and the doctor had been out once to tell my wife of the wide neck that would require a stent. When the treatment was over, the doctor reappeared in front of her to say that things had not gone as planned. She told him she wanted to see me in the ICU and he said, “I’ll take you there but first I have to do a little paperwork!” But it turned out he wasn’t prepared to argue with my wife (good thinking, doc!), so he put the paperwork off for a while and took her to the ICU about the same time that I was coming around.

You know the term “double whammy?”

I arrived at the hospital for the gamma knife radiation procedure at 6 a.m. and I was back at home by noon. I took a couple of days off work and had little or no after effects. Ten days later I had a follow-up visit with the neurosurgeon to see if anything out of the ordinary had happened in the meantime. The trouble was, it had. A couple of days before that appointment, I’d had the worst headache of my life.

The doc’s response to this announcement was, “I’ve done hundreds of these acoustic neuroma treatments and I’ve never heard of this kind of headache as an after effect. Sounds to me like you either hemorrhaged or you have an aneurysm.”  Great. Two problems in one head. Who said I wasn’t special?

The doctor told me to have a magnetic resonance angiogram (MRA). This is similar to an MRI — the same machine is used — except an MRA looks specifically at blood vessels. A month later (yes, the machine was still busy) I was back at the neurosurgeon’s office with a CD of brain pictures in my hand. He immediately confirmed the existence of a 5 millimeter aneurysm bulging out of the carotid artery and suggested I get in the hospital pretty darn soon because the aneurysm could “erupt” at any moment.

The aneurysm’s walls, although technically part of the artery, are considerably weaker inside that bubble, and pulsating blood, like the kind when your blood pressure is raised from exercise, for example, could burst through the weakened wall. Once that happens, the chances of a normal life are considerably lessened. These are the numbers as explained to me by my neurosurgeon: out of 10 people with an aneurysm that erupts, one will die without getting medical attention, the other nine will get medical attention. Three of the remaining nine will die shortly thereafter anyway, three will survive but are debilitated, and three will survive without any dramatic changes in their lives. Not the greatest of odds.

Like the tumor, I had two treatment scenario options. Surgery, of course, and this version sounded as enticing as the tumor surgery: slice the head open from the crown to the ear, peel back the skin and bone and anything else blocking access and attach something like a clothes pin over the neck of the aneurysm. The neck is the opening leading from the artery wall into the bubble of the aneurysm. The clip — the procedure is known as clipping — effectively seals off the bubble from the blood. If everything goes well and you don’t get an infection and nothing else dramatic happens — and with the brain, there’s always the opportunity for drama — this is a reliable solution to the problem. But, of course, it’s not the one for me.

Plan B is called the coil treatment. This is the 21st century way of taking care of pesky aneurysms: no opening up of the skull, out of the hospital in a couple of days, back to work in two weeks. Sounds almost like a vacation, bring it on. And it was close, so close.

By the way

Hardly a day goes by when I don’t say to myself, “Google is amazing.” I was thrilled to find lots of acoustic neuroma (also known as vestibular schwannoma) information: The Mayo Clinic  and the University of Minnesota have sections on the topic, and at least one site is dedicated to the condition: ANAUSA, and, of course, there’s a Wikipedia page.

As it turned out though, my findings on the Web had both a good side and a not so good. The ANAUSA site also includes a forum for people to discuss and compare their conditions and treatments. This is where the Internet was more of a hindrance than a help but I guess it depends on who you are and what you’re looking for. If youre a safety-in-numbers, misery-loves-company kind of person then the forums may be for you. But because there are an almost infinite variety of tumor size/patient age/doctor opinion combinations then it wasn’t a lot of help. I didn’t find anyone there with the same tumor size and similar age as me and, as I’ve mentioned elsewhere on this blog, it’s a mistake to think that just because someone else decided on surgery or radiation or a wait-and-see option, that you should.

So initially, I was so excited about there being an entire forum dealing with my problem that I wrote to announce my condition — and I’m not usually a contributor to forums unless I can help someone with a computer problem. But the days rolled by, and every night I went home and checked the message board for responses and started to become discouraged with the horror stories I was reading. Let me say though, that the people responding to my introduction were extremely sympathetic and upbeat about the future. It’s just that many other contributors wrote about going the surgical route and now were (pick one) totally deaf in one ear, had facial tics, still had a piece of tumor still in there, etc., etc. This can lead a reader to think all kinds of bad things are going to happen to them — but it ain’t necessarily so!

I mentioned some of these fears to my eventual neurosurgeon and basically, he said, “Stay off the Internet.” What he meant, of course, was talk to those who know. As it turned out, I talked to just two neurosurgeons both of whom I expected to suggest surgery, and both suggested gamma knife radiation. So that’s what I did.

Option two: gamma-knife radiation

It turned out that option number two was gamma-knife radiation. I’ve heard the name “gamma-knife radiation” referred to as “sexy” — granted it was a doctor who called it that which only points up the fact that “sexy” is in the eye of the beholder – but “scary” was closer to the mark for me.

Gamma-knife is the modern medical marvel that fixes acoustic neuromas — and lots of other neurological disorders. A metal frame is attached to the patient’s head in four places. The frame, in turn, is attached to a machine that looks a lot like an MRI machine: sliding bed, etc., but much more technologically advanced. When the patient is fast asleep and in the machine, the doctors — and there’s often three or more – come up with a plan of action. The plan involves how they are going to zap the tumor and from what angles and probably lots of other things I don’t understand because I’m not a brain surgeon. You pays yer money, takes yer chances, and hope their aim is true.

Around the patient’s head is a curved piece of equipment that’s full of holes — 201 to be exact. The gamma rays that are fired through those holes are not strong enough to do damage to tissue or hair on their own, but when 201 of them are all focused on the same 1.5 centimeters, then they can really do a number on that tumor.

The radiation does not remove the tumor, it can only stop it from reproducing and getting bigger. That’s the theory anyway – the patient has to wait a year for a follow-up MRI to see if there’s been any change in size.

So there were my choices: surgery or a one-time blast of non-invasive, outta there in half-a-day, radiation. Not much of a choice really, I went for the radiation. Don’t misunderstand, not everyone gets to make a choice; for some people the doctor effectively removes the choice. I was 57 and the tumor is 1.5 centimeters. If you’re 77 with a tumor of that size, the doctor may well recommend a wait-and-watch approach based on the theory that these neuromas are so slow growing that you’re probable going to keel over and die from something other than your tumor. If you’re 27 with a 1.5 centimeter tumor then your doctor may suggest surgery thereby eliminating you from a potentially long lifetime of regular MRIs. If the tumor is substantially bigger or smaller than mine, then the options may change again. So age and tumor size are crucial factors in the decision making process. Each case is unique, don’t go by what happened to me or anyone else.

Option one: surgery

The best I can tell you is that an acoustic neuroma is an extra burst of cells that no one needs inside the nerve down which sound travels. This nerve is next to a second nerve, and that one is concerned with balance. If the tumor is big enough it can affect both nerves. So if you are having trouble hearing out of one ear and maybe your balance is getting a little shaky then, no, you may not be the one in a hundred thousand people that get acoustic neuromas but, what the heck, go tell your doctor anyway.

My tumor was 1.5 centimeters which is on the cusp between small and medium. The two options for fixing this bugger are surgery and radiation.

Surgery, as you might expect, involves slicing your head open, and the tumor is cut out and tossed in the trash. If all goes well, you survive, your hearing and balance do not get worse, you don’t have a tumor anymore, and your hair grows back. A big potential problem with surgery is the risk of infection — your head is exposed to the world for pete’s sake — and I can’t imagine what infection means. I didn’t ask, but I’m guessing it’s nothing good.

Another risk is the surgeon not getting all the tumor cut out. He’ll leave a little bit in there. This is often because that last little bit is stuck on a nerve and it’s too risky to dig in there to get it. You know what that means? You’ve just had your head cut open and sewn back up and you’ve still got a tumor. I heard about a patient who had a nerve “nicked” by the doctor and she’s now faced with a lifetime of facial tics and an inability to completely close one eye.  Option number two just had to be better.