Comes now Dr. Null (and that's a good thing)
Marina has been in a lot of pain the last few days. To the Doctors Hu, Chu, Woo, and Koo, we now add Dr. Null, who was the physician Marina ended up with this morning, luck of the draw, while Dr. Misakian is away for a few weeks.

Marina, of course, suggested he go into partnership with Dr. Void.

But he's a keeper. He is one of the senior physicians on the staff at UCSF, and his reaction was indignant. "You mean you've had this pain for two months, and no one has referred you to a neurologist who specializes in neuropathic pain?" He assured Marina that he would make such a referral tomorrow, and call him directly if his referral specialist, Jeremy, doesn't call.

Meanwhile, the pain lament sent to Dr. Hu's office produced a prompt response from her practice manager, saying that it seems appropriate to consult with a physiatrist. This was a term we did not know, but now we know it is a physician who specializes in long-term or chronic conditions. (Do you know about the wonderful "define" feature on Google. You type in, for instance,
define:physiatrist
and up comes a range of short definitions from various sources. )

One might ask why these suggestions were not made two months ago . . . but anyway, between the impending neurologist and the impending physiatrist, it looks as if expert advice is on the horizon.

Meanwhile, Marina has increased her dosage of the painkiller Norco (from one to 1 1/2 tablets; it has originally been two), and already there is some good effect in reducing pain.

At least Marina is in the mainstream. The cover story in the new Time magazine is on pain management (and it mentions the Neurontin drug that Marina may eventually be able to take).

Anatomical Variations
All right, so there were unexpected developments. On Tuesday, 3 days ago, Marina awoke to find that her left leg and foot were swollen. Since we know that swelling could be a sign of blood clots, we called the clinic and were told to come right in.

In Dr. Misakian's absence, we saw Dr. Patel, who was sufficiently concerned to call in the senior doctor on duty, Dr. Daniels* who ordered an immediate sonogram.

"Immediate" turned out to mean three days, and even then we had to ask Dr. Hu to use some influence -- and she got Marina into the hospital's vascular lab in short order.

The finding, this afternoon, was that there are no blood clots, but there is an "anatomical variation," which means that of the two small veins that should be seen in the ankle, one is very very tiny and the other is not there at all.

The lab nurse had no notion of what this all meant, and whether it might be new or a long-term situation, or whether it could relate to the continuing leg pain. She faxed the report to Dr. Daniels, and there is an appointment for next Tuesday, Monday being a Holy Day.

Meanwhile the leg pain is definitely less, and Marina has increased the Effexor dose to 1 1/2 tablets, and will go to 2 tablets a day shortly, and begin cutting down on the Norco. Unless, of course the Anatomical Variation turns out to be something to fret about and deal with.

The good news for we who prepare little meals at 1 and 5 in the morning, to take the Norco with, is that Effexor is a once-a-day medication, taken at any time at all.
_______________
* Based on the dozens of staff portraits on the wall, he is the only African-American doctor in this division of UCSF.

Shall we dance?
This past weekend was our annual 2-day circle dance workshop with Stefan and Bethan Freedman from England. A few hours into the first session, all eyes turned to the door to the hall, through which had just entered one Marina C. Bear, walking (very slowly) under her own power, without cane or support.

Stefan had created a dance for this occasion, very slow, no twists or turns, to a Tibetan song from the extraordinary "Cho" album by Steve Tibbetts and Choying Drolma. And so, for the first time in two months, Marina danced. Just a little, and it left her exhausted for two days, but it is a start.

The Effexor medicine is definitely having a good effect. The initial half dosage produced a reduction in the severe nerve pain in the leg, although only for part of a day. (It is a time release tablet, presumably releasing 1/24th of its juice every hour or 1/1440th every minute). The plan is to work up to a full dosage within two weeks, hoping the common side effect of nausea isn't too bad (so far it isn't). So she'll go up to the full dosage in a day or two.

In what may be a modest setback, however, Marina actually sat at her desk and briefly looked at Email for a few minutes. There is still sufficient pain and discomfort that she won't be doing this regularly . . . but for a while there, I wondered if she might have the courage to forego it all and return to the fountain pen and the old-fashioned electric telephone.

Next doctor visits, barring unexpected developments: Dr. Misakian (primary care) March 8, and Dr. Hu (surgeon) March 15.

Effexor to the rescue (?)
It has come down to this:

1. The neuropathic pain is considerable, and often debilitating. All of the medicines that can have effect on neuropathic pain have a wide array of side effects. Nausea is the most common, but blocking or reducing sodium is also fairly common.

2. Marina's sodium is borderline low. Low sodium is really dangerous. There is no easy way to deal with this. Ingesting more sodium is not an answer

So this afternoon, at the office visit, Dr.Mikasian had a long consultation with Dr. Koo, the Doctor of Pharmacy who saw Marina in the hospital (along with Drs.Hu and Chu).

From his menu of options, Dr. Koo recommended Effexor, which, while commonly used for depression, has been found to have good effect on nerve pain, without reducing sodium. It does, however, cause nausea in about 1/3 of people, but this typically lasts "only" two weeks.

And so Marina will begin to wean herself away from the Norco, and onto the Effexor, starting this very day. Some of us will be very pleased when this changeover is complete in 2 or 3 weeks, because Norco is taken with food every four hours (hence meals at 1 and 5 am), while Effexor is a slow-release once-a-day thing.

And, once again, through this all, there is no problem whatsoever with the spine. Here is Marina standing next to Dr. Hu's computer, showing only the lower half of the spine. The upper half looks exactly like this--a mirror image, flipped over vertically.

Marina has posted her Xrays on the wall, and says she finds it rather eerie to think of all that "stuff" inside her.

The excellent visit with Dr. Hu
This afternoon was the first post-op visit with Dr. Hu, and she couldn't be more pleased. New standing X-rays were taken, and, being digital, they could be seen immediately, and enlarged almost to the molecular level. The bone fusion is going very well indeed. Weaning away from the brace can begin in about six more weeks.

After looking at the before and after X-rays (which I'll be posting in a few days), Dr. Hu decided to make Marina's case a part of her spine surgery curriculum; one rarely sees such a dramatic change.

Dr. Hu also says that Marina really should start taking Neurontin for the constant nerve pain in the leg, but only if and when the "medicine man" says it is OK, since it can block sodium absorption in the blood.

Here's Dr. Hu and Dr. Bear -- Serena and Marina -- this afternoon. Note: Marina is sitting; Dr. Hu is standing.

After 47 days, a ray of sunshine
We went for an actual walk this clear and sunny afternoon, just up and down the street in front of our house -- but it was the first time Marina had been out in fresh air and sunshine for forty-seven days. She loved it.

With continuing bouts of nausea, with both the new pain medication and the Tagamet to soothe the stomach lining as candidates, Marina has pretty much given up on all medication other than the Norco painkiller, and that in only half the original dosage. This seems to have had good effect for nearly three days. Most encouraging, since the pain levels, while still significant, haven't gotten worse.

First post-op visit with the surgeon, Dr. Hu in three more days.

No gnus are, in general, good gnus
The entries here thin out, as there are no major changes from day to day. The big issue remains pain management. There are a thousand things that control pain, or are supposed to, from homeopathic birch bark to morphine, and they all either have side effects or potentially bad interactions with other medicines, and the never-ending quest is to find a reasonable balance.

And so yesterday, with sodium level holding steady at a low but not dangerous 131 (even with a lot of liquid), Dr. Misakian starts tinkering. Reduce the amount of Norco by 1/4 since it can have adverse liver effects. Eliminate Vicoprofen entirely, since it may be causing nausea. Add a couple of new things, one for the main pain and one for soothing a potentially-irritated stomach lining. Come back in two weeks for more fine tuning.

Next week, Feb. 2, is the first post-op visit to the surgeon, Dr. Hu. Remains to be seen how much, if anything, she will have to say about pain. She's a 'cutter,' not a medicine woman, but she's also a compassionate lady.

The spine remains fine. The two 18-inch incisions are already starting to fade, although if Marina ever appears in a bikini, she will have an impressive 36 inches of scar to display.

Focusing on healing is Marina's full-time occupation. This is not a time for socializing or chit chat, either in person or by phone or Email, although short visits are usually OK, but sometimes not. (Check with care manager Fran Cooper, as previously announced; francooper3@aol.com.)

Thanks for checking in. More after the visit with Dr. Hu, or if there is any news before that.

We went back to UCSF Orthotics Dept. for a new brace, and it makes a world of difference. Much more comfortable, fits better, keeps Marina even straighter, and it has stars and comets embedded in the fiberglass. Lucy the Dog (see lower left) remains quite confused by this "new" person in her life, and is awfully good about not jumping up.

Goodbye walker, hello cane.
On Monday, the physical therapist did her evangelical number: "Throw away your walker!" So Marina now has a cane, which she finds quite liberating, in terms of where she can go, and how fast she can get there. But it is also a reminder of how weak she often is, so she moves with great care -- although I was not watching closely enough, and she managed to change the sheets on the bed, and was sweeping the floor when I caught her.

Her sodium level on the a bit more liquids regimen went in the wrong direction by two points, as of Tuesday, from 133 to 131, but Dr. Misakian was not alarmed; indeed, she had the feeling that things were stabilizing, and so she said that Marina should try one week with near-normal liquids -- 8 cups a day -- and if the sodium is still in the 130s as of next Tuesday, she can go to once-a-month monitoring.

With liquid returning, Marina's main complaint (besides the left leg) was her now ill-fitting brace. So yesterday afternoon, we returned to the UCSF Prosthetics and Orthotics department, where the very friendly people insisted that she must have stolen someone else's brace, since the current one hardly fit at all.

Her shape has changed so much in three weeks -- no more distended stomach, standing up straighter -- so there was no way to adjust this brace, and an entirely new one is being made. Marina vigorously hopes that the new one will feel better, not press down on the incision where some rib was removed, nor press into her throat when sitting. And besides she had her choice of embedded materials in the fiberglass: butterflies, flowers, the NFL logos, and the one she chose, stars and comets.

Thanks for checking in.

133!
The very happy news is that in five days, Marina's sodium count has risen from 128 to 133. The doctor (and the patient) are extremely pleased, and the reward is an increase in liquid from 3 cups a day to 5, until the next blood test and doctor visit, a week from today. 135 is the low end of the normal range, and that is the goal.

Marina still tires easily, but in between, she is doing the exercises prescribed by the physical therapist who visited the house, eating well in her six small meals every four hours (I've pretty much learned to prepare the 4 a.m. meal without waking up), and she even managed to take her brace off by herself, which I think is anatomically impossible, but Houdini would disagree.