more testing...more questions

It's been a rough few days.

Today, besides pain that took 3 doses of oxycodone to finally get under control, I just felt off. My head feels heavy on my neck, and when I sit down to rest, the back of my head hurts as I lean against the soft recliner.

Dr. Bolognese describes the instability in a verbal picture of a pumpkin balancing on top of a pencil.

I spent most of the day in bed. When out of bed, I was restless. Standing up hurt, moving hurt, sitting and resting hurt and in my brain, everything felt off.

Late in the afternoon, I laid down for 90 minutes and when I got up about 15 minutes ago, what a difference. Still weak, but the pain in the skull base is gone, my brain feels clear.

This is my self-treatment every day, lying down several times to take the weight of my head off of my spine. It serves much the same as sitting in traction, except I don't end up in as much pain after lying down as I do post-traction.

One thing new I've noticed is I experience nystagmus now. Officially, after some research, I'd say I am experiencing Spontaneous downbeat nystagmus. Nystagmus is involuntary movement of the eyes. You can see this on American's Funniest Home Videos when they twirl the cat on the office chair and when the chair stops, the cat's eyes continue to go back and forth.

There seems to be various kinds of this condition, some are congenital and some are related to head trauma and various neurological conditions. I never gave it any thought, although I have noticed lately some big changes in my vision. I have lightning flashes off to the sides, I have trouble with blurriness at times (and not at all at others), floaters, and now this.

I know I have it because a couple of times now, out of the blue, what I'm looking at quickly dips down in my field of vision, and then back up. It will go a couple of times. And then it is over.

Lately, I've also had an ocular migraine, something I've had before injury, but not in a long time.

I just read this quote on Wikipedia about pathological nystagmus:
"If the pathologic nystagmus is based in the central nervous system (CNS), such as with a cerebellar problem, the nystagmus can be in any direction including horizontal. Purely vertical nystagmus is usually central in origin."

What I have experienced has been "purely vertical." I'm not surprised that it would be a sign of CNS damage since that is what I have (spinal cord).

I have thought, back there in the ol' brain, lately about going to a neuro-opthamologist. I almost wonder if I am now experiencing some CSF flow issues, with different sensations I've been feeling lately. More pain up on top of the head, more actual headaches, and the vision situation.

Actually, the plan I have formed right now, is: as soon as I get the report from the new endocrinologist, I will go ahead and schedule another consult in NY. I need to talk to my surgeon. I have feared that he will insist I go home in a halo...but lately, even a halo is starting to make sense.

Speaking of the endocrinologist...I saw him on Jan. 15 and he had another DEXA scan done, and also pulled 8 vials of blood. I am anxious to find out what he finds in these test results. I called OHSU and was told that they will mail me the report and results as soon as they come in.

Today in the mail, I received 3 more lab orders from Dr. Madison at OHSU. I can have these done here, don't have to travel to Portland. They are for a 24-hour urine test to test calcium. I'm used to these, I do these every year for the pre condition to mulitple myeloma I have.

Another one is for creatinine, which I would have thought he'd have tested with the blood they took in Portland, that is pretty common to test for.

And the other is another 24 hour urine to test for telopeptide.

I know what the calcium test is for. If they find too much calcium in your urine, then it is evident that you are losing bone either due to bone cancer or osteopenia/porosis.

I feel good about this endocrinologist being thorough, though I wish I knew what the call for extra testing "means." Does it mean he is just being thorough as he makes a decision for me to get surgery or not? Or does it mean he's found something of concern, and that is why he needs to take more blood and urine? I'm not concerned about it, I've been through too much to not have learned that there is no sense in being worried about something I'll not learn until I learn it!

I already had an appointment for Feb. 17 with my hematologist/oncologist for the lab work I get every six months for the MGUS (monoclonal gammopathy, the MM precondition). And I am sure they will test for creatinine then. But on Monday, I'll go ahead and set up to have blood drawn...when I will take in the cute jug filled from my 24-hour urine collection. Such fun!

I try not to get my hopes up. I WANT to think that Dr. Madison has talked to Dr. B in NY. That my labs and DEXA looked pretty good and there's a chance I can go for the fusion. That Dr. M is being cautious and thorough by ordering these extra tests, and that I will receive a phone call soon that will say, "Your bones are great! I talked to Dr. B and we both agree, you are a good candidate for the fusion, so he's setting you up within the month!"

Dr. B told me last May that when I was ready for the fusion, he'd fit me into his surgical schedule within 30 days.

I WANT to think those things...

but I know better than to dream of it...at all.