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.
___________________
* 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.

Nuts. The pain is back.
After a glorious totally pain-free week, first there were a few twinges, then more, then longer-lasting pain in the left ankle. Things are still much better than 3 weeks ago, and there are periods of an hour or two pain-free, but clearly we're not there yet.

Marina will be in touch with the physiatrist on Monday, and predicts there will be another cortisone shot. The effect may be cumulative.

Well, at least the cause is now known, and the ultimate solution (more surgery) is also known.

Four days. So far so good (with only a tiny 'oops')
Four days since the magic injections, and still no real pain other than two very short one-second 'twinges' over the last two days, perhaps a reminder that it's not completely all over yet.

The left leg is still weak, and, curiously, Marina has been having muscle cramps in her back. But these seem to pale in comparison with being essentially pain free -- not just for the first time in four months, but actually, since there was considerable back pain before the surgeries, for the first time in decades.

The other happy news (for me) is that Marina's 'just in case' pain medication (Norco) is reduced to every six hours, instead of every four. This now means only one middle-of-the-night light meal to prepare to go with pill-taking, instead of two. And, we hope, a strong prospect of being weaned off of Norco entirely in the weeks to come.

11 a.m. the next morning. Zero pain. Best sleep in 4 months.

[Lest enthusiasm run unfettered . . . there is still weakness in the left leg, apparent since the first operation. Next matter to take up with Dr. Deviren, I suspect.]

But, as I may have mentioned, no pain!

3 pm. Zero pain. (Hard to type with fingers crossed.)
5:30 pm. Zero pain.
10:30 pm. Zero pain. (Easy to type with big smile on face.)