Wednesday, April 08, 2009

It was 20 years ago today...Part Three

On my fifth day the clamp was completely closed. A couple of hours later I began to get a headache, a VERY bad headache, very different from the ones caused by the aneurysm. In fact, it was different from any headache I had ever experienced. It seem to have no center, my whole head hurt. My eyes became very sensitive to light, small sounds were way too loud. I had trouble concentrating, thinking clearly. (Yes, worst than normal.) I had never had a migraine, but my symptoms sounded like one. My brain was now operating on 3 out of 4 carotid arteries; it did not like the new normal.

The doctors and nurses did what they could. Pain meds seemed to have no effect. I asked for a cool, damp towel to cover my head, curled up in the darkened room, and rode it out.

After about 48 hours - it seemed longer - the pain subsided. The tube was removed from the Silverstone clamp and the remaining small hole closed. I was moved out of the ICU to a regular room; they were preparing me to go home. I remember the hot shower the nurses finally let me take - with care to keep water off the neck - as being one of the most wonderful physical experiences of my life.

It was agreed that the operation was a success, that I would probably have more headaches, and I should go home, take it easy, and in two months come back for another angiogram to see if the procedure had the desired effect. What was unstated were the consequences if it did not.

A friend came to W-S and drove me home in my car. After 10 days in the hospital, despite being very well attended to, I was happy to leave. I was surprised that the ride home left me so tired. I walked directly through my front door, took a right into my bedroom and did not rise for several hours. I had become exhausted from sitting upright in the car for an hour and a half. It was less the aneurysm and operation than lying on my back for 10 days.

About a week after my discharge I drove to Asheville to the Mountain Area Health Education Center (MAHEC). I looked and felt better than I had in the hospital, but not by much. I asked for books about aneurysms. After a couple of hours I left, my head spinning, not by a headache but by what I had read. I now knew how deadly and debilitating aneurysms were. I read the texts, saw the photos, absorbed the statistics. And while I realized how lucky I had been so far, I knew I could still drop dead any moment. Another long ride home.

The migraine-like headaches returned. They were never as bad as the initial one, but usually bad enough to render me useless for a while. If possible I would just crawl into a bed and try to sleep through them. At first they came on about three times a week and would last for 12 to 18 hours. Fortunately, they began slowly, giving plenty of warning for me to adapt. As the weeks, months, and years went by they decreased in frequency, duration, and intensity. It took about five years for them to disappear completely. Otherwise I was great. My stamina returned, the incision became a light scar that neatly hid among the other lines on my neck. Other than the nagging thought that I could keel over at any moment and die without anything that could be done, I was just great.

I went back to work. My medical insurance covered just about everything. My vision, which had changed enough for me to need new glasses, returned to “normal.” I took that to mean the grape-sized aneurysm was getting smaller. I tried to imagine it becoming a raisin. I also tried to figure if there was anything triggering my headaches, to no end. After an episode after meal at a Chinese restaurant I became convinced that MSG was the key. It was not. I tried not to dwell on how one small section of artery, maybe an inch or so in length, could render an otherwise healthy person null and void. Here I was in the prime of my life and I could be taken down by a short length of bad tubing. How annoying, as the British would say. I finally tried to think about how fortunate I had been so far, how nice it was to be...anywhere.

I did not know what to expect when I checked back into the hospital in late March. That I was still alive was a good sign. Yet until the results from the angiogram were known I still had no prognoses. Once again they rolled me into that large room with all the equipment and staff. This time when I came to I was in the hallway and a technician I had not seen before was trying to get my attention. He had sheets of x-ray film in his hand. Through the fog I saw him point at the outline of a skull and heard him say, “It worked, Mr. Edwards.” He kept repeating, “It worked!” He sounded very happy, maybe surprised.

That evening in my room I had the TV on and was paying minimal attention to some cable medical show. At one point they had a gurney rolling down a hospital corridor, the camera showing what it looked like from the patient’s point of view. That caught my attention just long enough to watch the gurney roll through a set of doors and into a room that looked a lot like that large room with all the equipment and staff I had seen that morning. I turned up the sound and started paying closer attention. A patient was indeed having an angiogram. They showed the whole procedure. I wanted to look away, but couldn’t. I was transfixed. When it was over I turn off the TV. Way too much information for one day.

Dr. Brown rushed into my room the next morning with an assistant carrying an armload of folders. He had a big smile on his face. I had never seen him smile before. I had been told I would be discharged after lunch so I was not surprised when he said the procedure had been successful and the danger from the aneurysm had passed. He said he wanted to see me again in a year as a followup. Sure!

I asked him if there was anything I should or should not do. He said there were no restrictions. I then asked him if I could play the piano. He did not bat an eye and said, “Of course.” I then allowed that was odd because I couldn’t play before.

He seemed to have never heard one of the the oldest jokes in medicine.

He just stared for a few moments, then wished me well, wheeled and headed out the door. I stopped his assistant and asked, “Dr. Brown thought he was going to lose me, didn’t he?” “Yes,” she said. “If that thing had popped you would have been dead before you hit the floor. You made him very happy.” That was two of us.

On the follow-up visit a year later I mentioned my continuing headaches and asked if he knew of any support groups for people with my medical condition. He said he knew of none; the survival rate was probably too small to generate enough members. I thought I detected another smile.

With the internet there are now many a mouse click away. Here is one of them. And another.

I have photocopies of the angiogram’s x-rays showing my aneurysm. I thought about scanning and posting one of them to break up this text with some show with my tell. But decided not. I doubt people who see it would ever look at me the same. They are hard to forget. After all, benign as it has been, the aneurysm is still there. Besides, it would send my daughter right over the edge. Humm....

I also googled for photos of a Silverstone Clamp. None. If anyone finds a photo, please advise. I am holding on to mine for the time being.

I have learned much since about cranial aneurysms. I have met survivors, worked with one in Wisconsin. He had a rough time of it. I was much more fortunate. Our Vice President, Joe Biden, had two in 1988, just before mine was diagnosed. Neil Young had the newest procedure, detachable platinum coils, put in one in 2005. Add to that list survivors Bob Dole and Terri Garr (Young Frankenstein). They - we - were fortunate. Most are not noticed until they begin to rupture. Even then the condition is frequently not properly diagnosed until it is too late to prevent permanent disability or, more likely, death. I have met many more people who have known someone who died from one rather than someone who recovered. Among better known of the not so fortunate were TV’s Zorro (Guy Williams) and singer Laura Branigan.

Other than the aforementioned headaches, my aneurysm has - so far - had little long-term effect. Three carotids seem really to be about as good as four. I occasionally get a sore neck in the area of the clamp if I sleep on it oddly. I can’t have an MRI again as long as the metal clamp is in place. (Think what would happen if very, very, powerful magnets got hold of that stainless steel clamp.) Doctors won't let me scuba dive anymore, but they were never keen on the idea in the first place.

With little to remind me, I don’t think about that adventure very often. It was an oddly passive experience. There was nothing I did to cause the condition, nothing I could do to make it go away. I played only a supporting role in rendering it benign. For someone who values a moderate amount of control over his circumstances, that is disconcerting. Sure, sometimes lucky is better than good. But I still don’t like it. For a near-death experience (I’ll never know exactly how close I came), it was relatively drama-free. Sometimes it is almost like a story I heard, like it happen to someone else.

But when it does come to mind, like on this anniversary, I think about all those who gave me the opportunity for a second lifetime: numerous doctors, nurses, and medical technicians I likely will never see again, whose names have long faded from memory - if I ever knew them. They made my last 20 years possible. I am sure they would say they were just doing their job. How do you thank someone for 20 years?

I also think about my family and friends who came to my side, and provided support and encouragement. Maybe I had been lucky all along and didn’t know it.

Odds would have me well dead by now. But I’m not. Some would say there was a purpose to it all, a reason. I think not. But I will acknowledge opportunity.

I have been asked what I learned from the experience, how it changed me. Faced with such life clarifying events some choose to slowdown, stop, and smell the roses. Others speed up and try to experience as much as they can in the short time we all have.

I have decided to do both; and to repost this story in another 20 years.