Marina
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Friday, 8 April 2005

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.)


Posted by John Bear at 3:10 PM PDT
Updated: Saturday, 9 April 2005 10:53 AM PDT
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Results of the nerve-blocking procedure (early report)
12:30 pm, Friday

The nerve-block procedure was performed by Dr. Deviren between 8:30 and 10 this morning at the UCSF Surgery Center. The original plan had been to block just the L-5 nerve, and if that didn't produce results, then try the L-4 and L-3 later. But she sensibly decided to do all three at once. The procedure consisted of injecting a sedative (Marcaine) and a steroid (cortisone), the first to see if the pain would be lessened, the second to facilitate growth or strengthening in the nerve (while disqualifying Marina from playing major league baseball this season).

At 11 am, Marina reported being pain-free in the left leg for the first time since December 14th.

At 12:30, she reported a "tiny twinge" in the left heel: perhaps "1" on a scale of 0 to 20.

This is encouraging news.

Even if the pain returns to its previous level (it could be that, or it could be less), the pain-free period shows that it is clearly the nerve problem, and that the problem is almost certainly the size of the opening where the nerves leave the spinal column and enter the leg. (This was the pre-existing condition noted by neuroradiologist Dr. Hoghoughi earlier.)

The cortisone takes about two weeks for full effect -- and can be repeated if it seems to be working.

I'll post pain scores later today. If they stay low, that is wonderful. Even if they rise to last week's level (typically between 5 and 10 on the 0 to 20 scale), there is hope that the cortisone will have good effect. And even if it doesn't, now that the cause is clear, the prospects for successful corrective surgery are good.

Our car was stolen 2 days ago and I have a cold, but somehow things feel brighter.


Posted by John Bear at 12:45 PM PDT
Updated: Friday, 8 April 2005 12:54 PM PDT
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Friday, 1 April 2005
More surgery now a possibility.
Because Marina's left leg pain and weakness continues pretty much without interruption--sometimes sharp pain, sometimes major aching--there are now three possibilities, depending on the outcome of the nerve sedation test on April 8th.

In this test, the nerve is chemically blocked with an injection (lidocaine?).

1. If the pain is reduced, and does not come back when the sedative wears off, that is the best possible news.

2. If the pain is reduced, but does come back when the sedative wears off, this is an indicator that further surgery may be required on the nerve itself.

3. If the pain is not reduced by the injection, then it may be something else entirely, and it is back to the drawing board (and possibly to the Pain Clinic, not for a cure but simply to try to reduce the pain).

Marina is doing more and more, through the pain, and I find it both heroic and very sad to see. We walk nearly a mile every day, a little more each day. Last week, she went with our visiting daughter, Tanya, and Tanya's children to the weekly circle dance event, and actually danced four dances, including one that moves briskly (Alpha's Dance) before going home.

So we wait, and see, and hope for the best from the nerve test on April 8th, which I'll report here as soon as something is known.

Thanks for checking in.

Posted by John Bear at 1:47 PM PST
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Monday, 21 March 2005
Hu: spine is great. Marina: leg still weak; still hurts
Short visit this morning with Dr. Hu, the surgeon.

The spine is doing great; no problems, no pain. Fusion is fusing on schedule. Marina can now walk around without the brace in completely safe places (home; level paths in parks), but must wear it most places outside, and in cars, probably for at least three more months, till the next Hu appointment on the first day of summer.

Dr. Hu makes no bones (as it were) about not being a part of the leg pain and care team. She says Marina is in very good hands with the physiatrist, Dr. Deviren. She hopes time and medicine will do the job, but acknowledges that further surgery could be an option.

Marina is walking a bit more each day, including two or three blocks in our neighborhood, sometimes with minimal cane use, depending on pain level. One of the questions on the pain questionnaire given at the Spine Center this morning was: "If you knew you would never feel any better than you do today, would that be (a) desirable (b) satisfactory (c) unsatisfactory (d) intolerable. Marina chose (b), but there are strong hopes and possibilities of improvement.


Posted by John Bear at 3:54 PM PST
Updated: Monday, 21 March 2005 4:00 PM PST
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Thursday, 17 March 2005
Definitely a nerve problem. But sodium improves.
The electrophysiological 'velocity' test and the myelogram confirm there is definitely a nerve problem, almost certainly L-5 (a part of the sciatic nerve).

The physiatrist, Dr. Deverin, has asked for insurance approval to try a "selective nerve root block" in L-5 to see if that stops the pain. If not, she will try "transforaminal epidural injections" in L-3 and L-4. And she prescribes Topomax which can help nerve healing.

The insurance company may be getting a little testy. They denied payment for the last lab test (these babies cost more than $2,000 each), and we'll be appealing that decision.

Marina's sodium level was 132 yesterday, up one point from a month ago despite normal liquid diet, which is encouraging but not good enough says Dr. Deverin, hence no Neurontin yet.

There's more, but not urgent, and I am very tired just now.


Posted by John Bear at 4:49 PM PST
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Tuesday, 15 March 2005
A startling observation by Dr. Hoghoughi

Chapter 1: the neuroradiologist

This Tuesday afternoon was the vascular myelogram (a CT scan of the nervous system) ordered by the physiatrist, Dr. Deviren.

Before the event, we met at some length with the neuroradiologist, Dr. Donna Hoghoughi (hoe-GOO-gee). (Are there no doctors named Smith and Jones in this place?) She said the most extraordinary thing. She said that she had reviewed Marina’s CT scan done last November, before the surgeries, and while she knew nothing of the current complaint, based on what she saw in the scan, she predicted a strong likelihood of severe left leg pain.

In other words, Marina had some condition in the sciatic nerve, good old L-5, a narrowing at one point, that showed a predisposition to exactly the current condition. Dr. Hoghoughi politely said that it almost certainly would not have been noticed last November, because there were no symptoms; no reason to look at that part of the CT scan.

Chapter 2: the electrophysiologist

Faithful readers will recall that Dr. Null (filling in for Dr. Misakian) referred Marina to Dr. Charles Skomer, for an electrical test of nerve function, for which the preliminary diagnosis was a problem with L-5. Dr. Skomer, meet Dr. Hoghoughi. Marina returns to Dr. Skomer tomorrow for the detailed report.

So it may all be starting to come together. Dr. Hoghoughi has agreed to fax her report to Dr. Skomer, and of course it will go to Dr. Deverin as well. And Dr. Skomer’s report will go to Dr. Deverin as well. And everything will also go to Dr. Misakian and Dr. Hu. And then all these good people will, we all hope and trust, figure out what to do next.

Incidentally, the myelogram was no fun at all. A long and extremely painful procedure, Marina reports. Just positioning the needle in the spine to introduce the colored fluid was a 20-minute process, one millimeter at a time, guided by continuous ‘live’ Xrays to monitor where the needle was going. Marina will be pretty much out of commission for two or three days, mostly confined to bed, recovering from this, but for the trip to Dr. Skomer.

I'm sorry Berton Roueche is no longer around. I think he would have enjoyed this medical mystery.

Posted by John Bear at 11:51 PM PST
Updated: Tuesday, 15 March 2005 11:53 PM PST
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Tuesday, 8 March 2005
L-5
Marina's cry for help produced three quite different results. Let's track them for a while. The key factor is known as "L-5". More on that in a moment.

1. Physiatrist. Dr. Deverin ordered a CT myelogram scan (happens next week), and meanwhile canceled Marina's two pain meds (Norco, Effexor) and substituted two others (Lortab, Trazadone). The early results: extreme nausea, and no change in pain. Marina hates nausea more than leg pain, sometimes. So, following a letter to Dr. D., as of this Tuesday afternoon, Marina is switched back to the original two.

2. Electrophysiologist. Referral from Dr. Null to Dr. Skomer, whose business card says he is a Diplomate of the American Board of Clinical Neurophysiology, and also of Psychiatry and Neurology. He's affiliated with California Pacific Medical Center, something entirely different from UCSF.

Marina saw him this afternoon. He made it clear from the outset that he is not a pain doctor; he figures out what is wrong, and it is up to others to deal with fixing it, and with the associated pain.

His diagnostic technique is called a Nerve Conduction Velocity Study. Electrodes are applied to the left leg, and a rather severe electrical shock is administered -- over and over and over, in different locations. Each shock causes the whole body to jerk dramatically. No fun to watch; much less fun to have it done. Each jolt yields a very complex computer picture, relating to nerve function.

Dr. Skomer said "This is a really complex situation." He says, "You're going to be a tough one to figure out -- but that's my job."

The problem, he says, is in the nerve called L-5, which is one of two nerves that make up the sciatic nerve, biggest nerve in the body, running from the spine down the leg into the toes. Although Dr. Skomer did not use the word "sciatica," it seems, from a quick Google search, that the term refers to a wide range of nerve-related leg pains.

What next? Dr. Skomer needs more information. He also did an electromyogram, which is a test of muscle function, done by inserting small needles into muscles, which transmit information to the computer when the muscles are at rest, mildly contracted, and extremely contracted.

He also needs blood chemistry information, so the lab was visited. We return for results next week. Dr. Skomer strongly recommends visiting the UCSF Pain Clinic.

3. Pain Clinic
This was Dr. Misakian's immediate thought, but then she decided to wait to see how things went with the physiatrist. But Marina, who continues to hurt pretty steadily, is asking Dr. M. for a referral to the Pain Clinic.

Well, at least things are moving. So is Marina. Yesterday she went down the forty wooden steps to the garden, because she had to see how her lilacs were doing. (They seem on the verge of blooming. Can Marina be far behind?)

Posted by John Bear at 5:36 PM PST
Updated: Tuesday, 8 March 2005 5:46 PM PST
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Sunday, 6 March 2005
More Xrays
Those were from the front, of course(the oval thing being breast shield). Here are the ones from the side. Her spine was extremely curved both side to side and front to back.

Posted by John Bear at 12:49 AM PST
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Friday, 4 March 2005
Time out for a few photos
Your job is to figure out which is "before" and which is "after."

Posted by John Bear at 5:49 PM PST
Updated: Friday, 4 March 2005 5:52 PM PST
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Tuesday, 1 March 2005
...or you can have the pain treatment behind Curtain #4!
Marina's cry for help on dealing with the leg pain got three different kinds of answers from three different doctors, all arriving the same day.

First through the gate was the physiatrist (fizz-EYE-a-trist) who works with surgeon Dr. Hu. A physiatrist is an M.D. who specializes in long-term and chronic conditions, especially pain. Dr. Sibel (sih-BELL) Devirin (DEV-uh-rin) examined Marina this Tuesday morning. She quickly determined that the on-going leg pain is not CRPD (Complex Regional Pain Syndrome), formerly known as RSD. We're not sure what it means, but anyway it isn't.

However it may be a selective nervous block, which is treated with cortisone injections into the spinal region (if Marina is one of the 90% of cases where the hardware is not in the way). This will be determined by a specialized 'cat' scan called a CT myelogram, and that is scheduled for March 15th.

Meanwhile, Dr. Deviren has taken Marina off the Effexor medication (which seemed to work well for a short while) and put her on something new (for her) called Trazadone, which is also an anti-depressant that has the side effect of helping nerve pain.

After the March 15 lab test (unrelated to the myelogram), if the sodium level hasn't fallen, Dr. Deviren will put Marina on Neurontin. And for now, the Norco will be continued and possibly increased.

That's thing one.

Thing two is Dr. Null (remember him -- I checked and there actually is a website at www.DoctorVoid.com, but he's not a medical doctor) who checked in to say that he is mailing Marina a referral to a colleague at a different hospital, California Pacific, who is a neurologist and electrophysiolgist. We don't know what the latter does yet, or whether one might do this along with what the physiatrist recommends.

And thing three is Dr. Misakian checking in, to suggest that Marina visit the Pain Center at UCSF, which seems to be a separate entity there solely focused on baldness . . . no, actually, on pain; and Dr. M. also recommends increasing the dose of Effexor from 2 to 3 tablets a day (but Dr. D. has said to stop it entirely). Marina will have to figure out whom to tell or ask about what.

Meanwhile, Dr. D recommends lots of bed rest, with the left leg elevated so that it is higher than the heart, something Marina hasn't been told to do until now.


Posted by John Bear at 2:35 PM PST
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