Wednesday, July 26, 2006

Third Time's the Harm

My second spinal tap is done, and I'm recovering now. I should be back to normal by next week, possibly even this weekend. Although the procedure itself went fine, the side effects were more severe this time, and I spent several long days navigating the Medical Maze (as D— calls it).

The procedure itself went fine, with one wrinkle. I went into the radiology department of St. Joseph's hospital to have it done. Because my neurologist had run into the gate of bone when he attempted a tap the week before, I was having it done under a fluoroscope, a kind of moving-picture X-ray. This way, the radiologist could see exactly where he was going. Most of the people I interacted with at St. Joe's had a very good spirit of care and helped me feel well supported. The radiologist was no exception: he had a very gentle bedside manner, always explained what he was doing, and was warm. He remarked on the volume of fluid he was getting, and said that it must have been one of his "better sticks".

The wrinkle is that, immediately after the spinal tap itself, I had to go back to Outpatient and get some blood drawn. (The test I was having done, checking for oligoclonal bands to support a diagnosis of MS, uses both cerebrospinal fluid and blood.) I ended up waiting about an hour in Outpatient, without much choice but to sit upright for that entire time, which was against my doctor's recommendation. He wanted me flat on my back as soon as possible after the tap. The phlebotomist who took my blood was also confused at first by the order, as she did not recognize the test. I told her what I knew, and she rushed to put a hold on the cerebrospinal fluid so that it and my blood could be processed together. Then I went home.

Now, here's what
should have happened next. I should have gone home and rested for three days. The procedure was on a Friday afternoon, so three days would put me at Monday. On Monday, if I was feeling well I'd go to work. If, instead, I still had a positional headache on Monday (one that was worse when sitting up than when lying down), it would indicate that the hole in my dura (the tough sac surrounding the spinal cord) had not closed properly, and I was leaking cerebrospinal fluid. I would call the neurologist's office and arrange an epidural blood patch. This would fix me up, right as rain, and I'd be back to work on Wednesday.

What happened instead is that on Saturday, Audrie and I grew concerned that I might have an infection. We went to the emergency room, which left me in worse shape than before; another ER visit and a day of rest later, I finally got the blood patch on Tuesday and am recovering. That's the summary; but you don't read this blog because I summarize. You read it because I
dish the dirt. So read on for the juicy details of intrigue and suspense in monsoon-soaked Tucson!

Let's go back to Friday night. I had just had the spinal tap, and was at home in a well-prepared bed. I had books, video games, and my computer to keep me occupied. I decided to watch the movie
The Ninth Gate, a delightful romp through the world of devil worshippers, which I had received as a birthday present but hadn't yet gotten a chance to watch. Taking seriously the instruction to stay on my back, I craned my neck at an awkward angle for a couple of hours, probably straining it. By Saturday, although I had been resting and caffeinating assiduously, I noticed a distinct postural headache. My neck and back were also very stiff and sore, I thought probably from watching the movie on Friday. But then Audrie looked at the injection site on my back and noticed it was swollen.

After my first spinal tap, I had had only a little hole like I had been poked, no swelling. Hep young jazz-cats that we are, Audrie and I turned to the Interweb for clues to help us interpret what we were seeing. WebMD obliged with lots of useful information, including this advice:

After the test

Contact your doctor immediately if you have:
        • Chills or a fever.
        • A stiff neck. This may be a sign of a developing infection.
        • Any drainage or bleeding from the puncture site.
        • A severe headache.
        • Any numbness or loss of strength below the puncture site.

Well, I did have a stiff neck. I had that swelling at the injection site, roughly dime-sized and ringed with red, possibly indicating subdermal drainage. Maybe I had a slight fever, too—and I had been taking Tylenol, which might mask a higher fever anyway. Good thing we checked! I was clearly experiencing full-blown infection! Actually, we just didn't know what to do now. All we knew was that things were different this time than the first time, and we were worried. Audrie called the on-call neurologist at my doctor's office and described what she was seeing. He advised going to the emergency room to have a doctor look at it and render an opinion on infection, so we did.

Emergency room doctors have to deal with a lot of different kinds of problems, and it's unlikely you'll get a specialist in your particular problem area. But there are some things that they know almost always improve a patient's situation: get him properly hydrated, clean any wounds, manage pain. After I sat up in Admitting with a headache growing steadily worse, that first ER doctor told us I was not infected, and I am glad of his expertise for that. We asked about getting a blood patch, and were scared out of it. The anesthesiologist told us, by proxy through the ER doctor, that there's a risk of chronic pain from the waist down, and they'd rather let it heal on its own. But if I really wanted, he'd do it anyway. The ER doc prescribed Percocet (a pain medication) and a couple of other things to manage the side effects of Percocet, and sent me home. The nurse handed me a Percocet and a glass of water with my discharge papers, and I was on my way.

By the time Audrie had started the car, I was already feeling nauseous from the pain medicine. Pain actually had not been my main complaint, as long as I was able to lie down, and I was perfectly happy with Tylenol up to that point. But out of habit, I took the pill the doctor gave me, and that led me to a great deal of trouble. When we got home, I made poor Audrie run halfway across town to get me the anti-nasea medicine that is apparently de rigeur with Percocet. That helped some, and I was able to eat a tiny supper. The midnight Percocet didn't help my headache, but I slept through most of the nausea. The early-morning pill had me vomiting in less than 5 minutes. From this point on, I couldn't keep anything down, not even water. So by that afternoon, I was back in a different ER with an IV stuck in me.

This time, we brought a pad, blanket, and pillow, and I lay on the floor while Audrie did the first part of checking me in. I still had to sit up to get my vitals taken, though, and was soon vomiting again, from the headache pain as much as from the Percocet this time. Two bags of fluid, one bag of caffeine, and some IV morphine later, I went home feeling...well, feeling at least alive. We had asked about a blood patch again, only to be scared out of it again. This anesthesiologist told us, again by proxy through the ER doc, that there was a danger the epidural needle would actually puncture the dura, and then I'd have an even bigger leak to contend with. The ER doctor prescribed morphine to manage the pain (which still was not a big deal when I was lying down). Out of habit, I took it, and it did help me sleep. I slept most of Monday, not getting much better and not getting much worse. If things had gone according to plan, by this day I would have known clearly that I had a spinal headache and been arranging for a blood patch. But, thanks to the two days of misery in emergency rooms, I was behind schedule. Not only that, but the anesthesiologists our ER doctors had talked to were clearly reluctant to perform a blood patch, and I didn't want someone fearful poking a needle in my back.

Tuesday morning (yesterday as I write this), we did call the neurologist's office and get an appointment for a blood patch with someone who does them regularly and thinks they're not a big deal. Audrie, by now an expert at Admitting, made sure I was set up with a bed straightaway upon arrival, so I didn't have to sit up or lie on the floor. The anesthesiologist took 20 cc (four teaspoons) of blood from my arm, injected it in the epidural space around my spinal cord, and I immediately felt better, if fragile. If I understand correctly, what this blood does is form a compression sleeve around the dura, increasing the pressure of cerebrospinal fluid in the brain so your headache goes away. It also may seal the hole from the original lumbar puncture. Kind of like an Ace bandage, I guess, or like squeezing a balloon animal that has started to get a little flat. When we came home, I didn't know what to do with myself for quite a while. I had grown so accustomed to lying in bed that being able to walk around, if stiffly (my lower back is sore from the blood patch), was a new adventure. I also cried and cried from the relief of what had grown to be long-standing illness.

As I tried to describe to Audrie how I felt, I just kept getting analogies. I felt like a thousand-year-old vase. I felt like a Japanese paper lantern that had been crumpled into a ball and was slowly inflating again. (You have to picture this one as drawn in the style of Hayao Miyazaki's Spirited Away, with the outline of the lantern's real shape forming a ghostly image around the crumpled lantern.) I could hardly remember that weeks were divided into days, for my personal calendar had been reduced to 6-hour periods of sleeping/waking between taking pills. But after eating an all-organic meal from Eclectic Pizza, I started feeling stronger.

Last night I slept a broken sleep, but today I feel better yet and look forward to a full recovery soon. The medicines I took will take a few days to drain completely out of my system. My back will still be sore for a couple more days. I'll have to taper off the high doses of caffeine I was taking. All minor stuff—I feel good, and I feel optimistic.

The neurologist was great, again. He had been on vacation, but came straight from the airport to his office upon getting the page about me. Then it was only about two hours from the time he called me until the time I was getting my blood patch. He called again first thing this morning to check up on me. Now we just wait for the results of this test, and get ready for Avonex. But I'll write about that separately.

Friday, July 14, 2006

The Gate of Bone

Went in for my second spinal tap today, but it was a dud. The doctor ran into bone twice when trying to get to my spinal fluid, and decided to postpone the procedure until he could do it under "fluoro". Sounds like something that would deplete the ozone layer, but actually it's a fluoroscope, a device that lets the doctor see what he's doing under X-ray so that he can go right in, easily missing the bone. You can read about fluoroscopy at the Wikipedia if you want, and then you'll know at least as much as I do :)

So the good news is that I won't be knocked out for the next couple of days. I'll just have a sore back where I got poked, something easily treated with warm, moist towels, Advil, and ice cream bars. The bad news is that I will miss some work next week, we'll have to juggle our schedules around, and I'll be knocked out for a couple of days then instead of now. I'm still feeling too keyed up from anticipating the procedure this time to go to work, so I plan to chill with the cats for a few hours and then see how I'm doing. I cleverly stayed up late last night so that it would be easier for me to sleep today—maybe I'll take a nap.

The doctor's office is going to call later and schedule the "third time's a charm" spinal tap for next week. I'll write again when I have more information. Stay cool, have a fun summer!

Tuesday, July 11, 2006

Partial Results and a Step Forward

Went to see the doctor today, because we kept missing each other over the phone and I wanted to ask about the results of my tests so far. I'll give details at the end of this post.

So far, we still don't have absolutely firm evidence that I have MS, but there's nothing else that appears to be a candidate. I'm going to have a second spinal tap on Friday; the lab didn't run one of the important tests the doctor ordered from the first spinal tap.

I'm also going to start taking Avonex, a preventative drug which helps a lot of people avoid exacerbations of the disease, but it will be a few weeks before that's all set up. First, I have to get signed up with the company that distributes it, get training in how to inject myself (which I'll do once a week), and possibly do some other paperwork. Avonex is a drug that "modulates" the immune system, meaning that it tries to keep it from becoming too depressed or too active. There are not any bad side effects from healthy people taking the drug, so I won't be doing any harm even if I don't have MS after all.

I was once again very happy with my doctor, Dr. Michael Glynn. He is aggressive about treating the disease, and unwilling to take chances with my health. For example, since the lab didn't run the test he wanted on my cerebrospinal fluid the last time, he wants to do this second spinal tap to avoid any question of what might have shown up. He also said that if I have symptoms that break through the Avonex a few times, or if the side effects (generally, a day of flu-like malaise on the day of injection) are too severe, then we'll move me to a different drug; and he'll treat the immediate exacerbation with steroids to help prevent long-term damage. He's totally in favor of me getting a second opinion if I want one. Most importantly, he seems genuinely committed to helping me manage my MS, and he cares about my health and well-being. He also believes that I will do well, both with treatment and with the disease, which I find encouraging.

I'll write again on Monday about how I do with the spinal tap. After that, it will be a week or two before I get the results. I'll write again when something interesting has happened on the Avonex front, as well. Till then, it'll be life as usual: work, spend time with friends and family, play, learn.

For those of you who are interested in more technical details, here they are. My levels of IgG (Immunoglobulin G, or gamma globulin) were normal in both my cerebrospinal fluid and in a subsequent blood test. This is unusual for someone with multiple sclerosis, because IgG levels are generally somewhat elevated in people with auto-immune diseases like MS.

My somato-sensory evoked potential (EP) test was normal, while my visual EP showed a borderline slowdown. Usually, someone my age would be totally normal in both.

The test the lab didn't run was for oligoclonal banding. If this test is positive, then it's a pretty good indication (in my case) that I do have MS. If it's negative, that doesn't give us any diagnostic information. But since the lab didn't run this test, we currently have even less than no information :)

The MRI of my cervical spine was normal. Only the MRI of my brain proper showed plaques (scars).

All of this put together still does not give us a solid diagnosis of MS, but the doctor said there's nothing else that it's likely to be at this point. We'll proceed under the assumption that I do have MS, stay on top of my treatment, and overall just try to keep me as healthy as we can.