Eight months later . . . brief report on May 18th
Surely no one is checking in any more . . . but in case Posterity wants to know, here's a brief update.

Things are well. Slowly and steadily, things kept getting better and better. A significant breakthrough came early in 2006 when Marina left the Pain Management Center at UCSF (which did not seem to be having too much effect) and went to the Sports Medicine Center, which is more geared to getting people back on the field, as it were. The only troublesome bit, now, is the left shoulder: a case of 'frozen shoulder' probably caused by sleeping on the same side for nearly a year. Marina cannot raise her left arm above shoulder height, which is especially annoying during dancing. Dr. Ma, the man in charge, is recommending arthroscopig surgery to address this problem, a relatively simple in-office procedure, which may happen within the next few months. Physical therapy is also addressing the soaz muscle, which tightens up and prevents Marina from standing as straight as she otherwise might. But in general, things are really great, and we are very grateful.

Three months later: an update
It is three months since the last entry, and an update seems in order. There continues to be slow and steady improvement, but there is still quite a ways to go. Marina's considerable level of fatigue was finally discovered to be mononucleosis, for which there is no cure, just the passage of time. (Turns out 95% of people carry the virus, but it rarely produces the disease. Marina said she was really annoyed because she didn't have any fun getting it -- no kissing boys in dark corners after the prom.)

The leg pain continues, and has been occurring in the right leg as well as the left. Not debilitating, but annoying. Dr. Misakian finally, last week, said that it would be appropriate to visit the UCSF Pain Clinic, and the insurance company has approved that, so it will happen soon. (Some of us wonder why this wasn't done six months ago.)

Marina continues to be generally of good spirits. She is teaching her ethics class in Berkeley this fall, preparing meals, going to some Rigpa Buddhist meetings, driving locally (but still not on freeways or bridges) -- and napping a lot. (The mono is wearing away but still present.)

Here ends the 'blog' -- at least for a while

She is so beautiful, and she is so brave.

Six months ago this week, our alarm went off at 4 a.m., but we were already awake, having slept little. We headed for the University of California hospital in San Francisco in the cold pre-dawn hours, for what Marina called her "great adventure." I try to imagine what it must have been like for her then to face two complex 7 or 8 hour operations a week apart: at best, life-altering; at worst, life-threatening. The feeling of sitting for hours in the surgery waiting room, twice, will never leave me.

During 21 days of hospitalization, seven of those in intensive care, she lay there in great pain, and extraordinary discomfort, six tubes in the body, but always with a little smile and kind words, and a fierce determination to get through this time. So brave, and so beautiful.

The rejoicing at the success of the spinal surgery was, sadly, offset by the considerable pain and weakness in the left leg, apparently caused by inadvertent damage to the sciatic nerve during the first surgery. Half a year later, those problems persist, but the pain has gone from sharp to dull, and the weakness diminishes oh so slowly, benefiting from medication, extensive and ongoing physical therapy, and perhaps most importantly, simply the passage of time.

We have been, and continue to be, immensely grateful for the support of family, friends, and colleagues. Giving blood (26 pints, all of them used in surgery), flowers, visits, bringing food, walking the dog, cards, letters, prayers, so very much has been offered. So very much.

The six-month visit to the surgeon, Dr. Hu, on June 21st, finds that the spine is healing slowly but well. The fiberglass body brace is no longer needed, but the smaller support device, like a giant Ace bandage, is still a good thing. Driving a car is possible soon. The powerful pain medication, Norco, has been slowly reduced from 12 tablets a day to 3, and eventually to zero. The Topomax will continue because it may be helping nerve re-growth. The sodium level, life-threateningly low after the surgeries, seems to have stabilized at a level just below the normal range, and will be monitored.

Marina is still very much in recovery, mind, body, and spirit. She moves slowly, but fairly easily, and she dances the less-vigorous dances. She tires quickly, benefits from a long afternoon nap, and sleeps from 11 pm to 8 am most nights. She is beginning to do a little of the dreaded and once-forbidden "BLT" -- bending, lifting, and twisting. She looks terrific, but she doesn't acknowledge that yet. Her eyes, I think, continue to see a body that is painfully slender, and slowly clawing its way toward normality while encompassing four 17-inch titanium rods and considerable additional hardware and two scars, as James Thurber put it, "from guzzle to zatch."

Last December 13th, Marina's condition was genuinely life-threatening, as the spine curved slowly but inexorably toward the lungs and heart. And now, thanks to the hands of Dr. Hu, the determination and spirit of Marina, the support of all (and, necessarily, the expenditure of more than $600,000--the vast majority paid, without dispute, by HealthNet Insurance), it is all wonderful in the most literal sense: full of wonder.

She is so beautiful, and she is so brave.

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Here ends the Marina "blog"--at least on a regular basis. Thank you for checking in, and for your support and your comments. You may wish to check back from time to time, since there will inevitably be more things so say.

John

What's what as we approach, good heavens, six months
This week, Marina met with Dr. Deviren, the physiatrist.

Dr. Deviren believes that with the passage of time, the L-3 and L-4 nerves, and the S-1 for good measure, will take on more and more of the work of the damaged L-5, and that the pain and the weakness will continue to diminish. Because of his possibility, thoughts of possible further surgery are on hold, as is the notion of further injections of Cortisone into the nerves, at least for a while.

Marina reports the leg pain now feels more like muscle than nerve pain, althrough realistically there is probably some of each. She is also having occasional back spasms, which may be related to the back muscles, detached during surgery and then reattached, asserting themselves. She is really benefiting from her hour each week with Amy Sellenger, the physical therapist who specializes in people with spinal fusion surgery.

Amy has provided an elastic brace, sort of a giant Ace bandage, for wearing around the house, to help keep Marina standing straighter. And the cumbersome fiberglass body brace was rejiggered (I believe that is the technical term) at UCSF, in effect creating a pocket so that the brace does not push on the whatever-it-is that causes a painful bump on the mid-left of the back. It is hoped that Dr. Hu will have something to say about the whatever-it-is (Amy thinks it might be scar tissue, but it could be bone growths) on the 6-month visit in two weeks.

While Marina is doing many things now -- spent some time in the garden for the first time today -- she tires very easily, and takes one or two naps a day. Her Topomax dosage is increased to 400 mg, where it will remain. She really hopes to be able to drive before too long, but that is not in the cards yet.

And then there's the low sodium problem: remember the low sodium crisis? Never fully resolved. A new blood test was just done, and there should be results in 3 or 4 days. It was 133 a couple of months ago. 135 is the bottom end of the OK scale, but 140s would be better. Not clear what will be done if it is still low.

Just two pain-free days this time. And the jitterbug. And Rigpa.
Discouraging results. Four pain-free days after last month's injection, only two days following last week's injection. Marina will be meeting with Dr. Deviren on June 2nd, to discuss options: more injections; different medication; wait to see if increased Topomax dosage has an effect; or more surgery.

On another hand: our Friday evening circle dance group has been meeting without interruption for over 20 years. The dances range from slow and meditative to rather lively, and sometimes downright silly. One that is quite lively and quite silly is a modern jitterbug version of a Greek dance called the Misirlou. As it happened, Marina was to be brought to the dance venue about halfway through our two-hour session. She was not there when I went to put on the jitterbug music. But when I returned to the circle to join the dance, there she was, in the circle, doing this quite lively dance. Yes, it was done through some pain, but it was done, and that seems awfully encouraging.

And the following day, she went into Rigpa, the Tibetan Buddhist center she has been involved with for many years, for the first time since December, and stayed for more than half of an all-day teaching, until fatigue set in.

So 'ordinary life' comes slowly, and with difficulty, but it does come.

A complicated day with complicated results
Marina had her 2nd nerve injection today. Quite possibly the worst pain she's ever had. The injection pain was gone after 2 or 3 hours, but even thinking about it, 7 hours later, is difficult.

Contrary to what we believed after the first injection, the Cortisone was NOT injected into L-5, the damaged nerve, because there is 'hardware' in the way, so it was L-4 and L-3 only. It is even more remarkable that the first one -- and now the 2nd -- has resulted in absence of all pain. The first one lasted 4 days. We shall see. (The excruciating pain today was probably due to an additional attempt to access L-5, but not successfully.)

Here's what's happening, accordingto Dr. Deviren. Our remarkable bodies compensate in interesting and helpful ways. If L-5 is not working right, then L-4 and L-3 can and will take on some of its functions. But a full take-over can take a year or even more.

We are learning that pain and weakness are two very different things, although both caused by nerve damage. Even though Marina is pain-free at the moment, the left leg is still weak. The Cortisone may help address this, and so may the Topomax she takes daily -- and so may the new regimen proposed this morning by the physical therapist.

Amy believes that the extensive walking Marina is doing is great for parts of healing, but damaging to others, since her lower spine, where there is the most fusion, shouldn't yet bear as much weight as it is. The proposed remedy is returning to the walker, for walking outside the house, so that the strong upper body and arms can push down and take weight off the lower spine and hips.

Marina will see Dr. Deviren in two weeks, and will be spending an hour with the physical therapist every week. And everyone agrees that her body brace needs to be retrofitted, because the bursas (two of them), or bone spurs on two vertebrae, make things uncomfortable, especially while in the car. So it is back to the orthotist as well.

And we shall hope and wish that the pain-free period, which is such a blessing, will last more than four days this time.

Pain vs. Weakness: new information, and things in motion again
Marina will be having her second injection of Marcaine (like Novocaine) and Cortisone into the nerves next Monday, the 16th. Over the last few weeks, she reports that the sharp pains are entirely gone, but the non-sharp ("headache in the leg") ones continue. The improvement may be a result of the injections.

However. She saw a new physical therapist yesterday. Amy Sellenger deals primarily with people who have had spinal fusion surgery, and was recommended by Dr. Hu. Following an hour of testing, Amy confirms that the left leg is significantly weak, and the right leg is slightly weak.

Since this was certainly not the case pre-surgery, the question is whether the weakness comes from something that happened in surgery, or lack of activity, or some of each. Since the left leg weakness was noticed the first time Marina stood up, 3 or 4 days after the first surgery, the former seems likely.

Now what? Things will continued to be tried -- more injections, more physical therapy, perhaps more surgery -- and hoping for more improvement. Marina is generally of good cheer, but, needless to say, disappointed at the way things have gone (while also being very much aware that some people who have the same surgery end up far far worse, including paralyzed, blind, or even dead). She did spend the entire evening at our weekly circle dance session for the first time, dancing just the slower ones that don't require turning. But that's real progress too.

More, inevitably, after the next injections next week.

Life trudges on.
Very little to say. Marina has been hoping and hoping that the next cortisone-into-nerve injections would be scheduled, but to date, no word, which is disappointing.

As it happens, during my annual physical checkup yesterday,* there was more talk about Marina (who was Dr. Cohn's patient for many years) than about me. (She had to leave him, to join the medical plan that included Dr. Hu.) Dr. Cohn** points out that nerve tissue is the slowest-healing tissue in the body, and if damaged, can take 12 to 18 months to heal. He says that if Marina were still his patient, he would have prescribed Oxycontin instead of Norco, because its pain-killing effect rises quickly to a certain level, and stays there until the next dose, instead of rising and falling with time.
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* utterly normal in all measurable ways
** under a pen name, he is the author of wonderfully funny books about the practice of medicine, including "Kill As Few Patients as Possible: essays on becoming the world's best doctor," and his scathing indictment of HMOs, "Dr. Generic Will See You Now." One of his many adages: "Choosing an internist who isn't Jewish is like buying barbecue from a place run by Caucasians: it might work out well, but why take a chance."

Neuroanatomy 101
Neuroanatomy 101
Here is an actual photograph (of a model, not of Marina's insides) showing where the three relevant nerves leave the spine en route to the left leg. The exit holes here are nice and large. Marina's are not, and therein lies the problem.

The pain is back. The next steps are clear.
Following the four totally pain-free days, each day a little more has crept back. Not quite as bad as before, and there are still occasional pain-free moments, but still . . .

The next step, says physiatrist Dr. Deviren, is to repeat the cortisone injections into the three branches of the sciatic nerve. This will be done as soon as her schedule permits. Cortisone can be cumulative, as we learn at the Barry Bonds/Mark McGuire Institute, so there is always hope that the next one will do better.

One doesn't want to overdo it, however, so if one (or possibly two) more don't do the job, then there is the prospect of more surgery, this time to enlarge the little holes at the base of the spine where L-3, 4 and 5 pass through.

Could this have been done during the original surgeries, if anyone had noticed then what the neuroradiologist (I get to type "Dr. Hogooghi" again) noticed after the fact, that the holes are too small? We probably shouldn't go there.

Meanwhile, Marina is generally of good spirit. She has been coming to our regular Friday circle dance evenings for a short visit, 2 or 3 dances. A lifetime of living with pain has few advantages, but this is one. And unlike the previous 40-something years, there is no back pain whatsoever since the operations.