Vignettes: Neurologist Check-up

In a good news/bad news situation, I always prefer to hear the bad first. So, this post isn’t necessarily written in chronological order. It’s OK. It doesn’t have to be. 

I always try to piggy-back my appointments in New York so that I don’t have to make multiple trips for singular appointments. Luck is usually on my side, but sometimes it just isn’t possible. Over the next five weeks, I have a series of three trips that I have to make for single purposes.

Last Monday was the first trip. A check-up with my neurologist. This is the first check-up I’ve had in nine months where I hadn’t had a nerve block just prior to the appointment. And hey, guess what? I still have CRPS.

I arrived to the appointment about 45 minutes early. Which meant I had to sit and wait. Which my leg hates. So, like a obstinate child, my leg decided to have a full-blown temper tantrum. By the time of my appointment, my leg was in a state of uncontrollable dystonia, making it difficult for my neurologist to fully assess the condition of my condition. But my leg was cold, and a different color, maybe not as swollen, blah, blah, blah. He asked where my worst point of pain was. Under the medial malleolus? Yes. And the center of the top of my ankle. And about two inches above my lateral malleolus on my fibula. And at the top of my fibula. And sometimes behind my knee. “Uh, huh. Yes,” he said, “those are the major nerve junctions…”

My doctor then reviewed the timeline of all of our visits in order to determine my progress, if any. We agreed that the medication and the pain management treatments help reduce some of the CRPS symptoms.

We had a discussion about baclofen. He asked if it made me sleepy. I said yes, but it, combined with the diazapam, actually controls the spasms. He raised his eyebrow as he looked at my shaking leg. I said I didn’t take my dose of baclofen yet because I fall asleep within 10 minutes of taking it. “Ahhh. And so you wanted to be awake for the appointment?” We laughed.

Then he quoted Voltaire. (I know I’ve said it before, but I will say it again. I love my doctors so much. Because they do things like quote Voltaire.)

“The art of medicine consists of amusing the patient while nature cures the disease.”

Yeah. Basically, he said there’s not much that he can do for me at this point beyond refilling my prescriptions. He was frustrated that he isn’t treating me. His frustration is with CRPS and how the disease has a mind of its own. He said that I should keep seeing my pain management doctor and come back to see him for another check up in 3 months.

While trying to fumble my shaking leg into its boot, I asked, “so, is this my life now, for the rest of my life?”

He looked down, he sighed, he looked up, he looked into my eyes. He said, “for now… CRPS takes hold, but at some point, sometimes, usually after many years, it decides to ease up. You first came to me four months after your injury. We were able to treat it early, and that can be promising.”

So yeah…

In other, happier news, on Monday evening, I took another ballet class! This was my second class since my accident almost three years ago. The first was last March, just after I’d had my nerve block. Monday’s class, even though it was the same “absolute beginner” class I’d taken two months ago, was exceptionally more difficult. My leg was not cooperating, and I had trouble standing on the right foot. Releve’s, and most certainly jumps, were out of the question. But who cares. I danced again. Sort of.

Seeing my teacher, interacting with the other students, hearing the brilliant pianist play for us, all helped heal aching pieces of my psyche. My teacher lives close to where I was staying so we rode the train together and were able to catch up. She gave me the best hug I’ve had in a while. I told her when I would be back in town again and that I plan to come to class again.

I was staying relatively close to Rockefeller Center, and I really wanted to see Jeff Koons’s new installation, Seated Ballerina. I walked down Sixth Avenue, past Radio City Music Hall, and wouldn’t you know it? NYU was having their graduation. Apart from the ensuing chaos, it was a pretty spectacular scene. Coincidentally, Columbia’s medical school was also having its graduation on the same day.

The hope that filled the city air that day was almost tangible.

Vignettes: Third Sympathetic Block & Another Neurologist Check-up

This week, I went back to New York for my third sympathetic nerve block and another neurologist check up.

The nerve block went very well. My pain management doctor said it was one of the best that they’d ever done and that she wanted to put my images in their Hall of Fame because the needle was perfectly placed.

The doctor added a steroid to the cocktail to try to prolong the effect of the analgesic. This may have been the last time they will do this procedure. Depending on how long this block lasts, the next step may be something called radiofrequency ablation. I googled it, and it does not sound like fun. But, it sounds like more fun than the next next step (to which I hope I never get): the spinal cord stimulator. I left the appointment with my images (for framing), packets about the procedures, and an informational dvd.

My appointment with the neurologist was after my nerve block procedure. He said that he can see some very slow improvement in the lateral rotation of my foot, and is hopeful that the boot may be slowly working to correct the alignment issue in my ankle. He said I was walking “a little less like Charlie Chaplin.” Our goal is to avoid surgery, and he said that it is promising as long as there is any amount of improvement, no matter how small. “It may take forever, but it will happen.”

Vignettes: Neurologist check up and 2nd Sympathetic Nerve Block

I flew back to New York City for my second sympathetic nerve block and a neurologist check up.

The second block was emotionally much easier because I knew what to expect. My doctor used a thinner needle which took longer, but was slightly less painful. She also made the injection at L1L2, instead of L3L4 where she made the first injection.

There was one moment when I had to remind the doctors that I was fully conscious and perhaps they, for my benefit, could find a different way to say things like “scrape the vertebral processes.” Otherwise, the procedure went well. My doctor still maintains that I am a good candidate for remission and told me to keep up with my rehab.

14853120_10155458408823146_6388742470262445504_o

My neurologist was pleased with the result of the block. He concurred that it appeared to be doing its job and agreed that if I may see remission if I stay focused on rehabilitation and therapy.

Vignettes: Neurologist Check Up and Sympathetic Nerve Block

I went back to NYC for a routine follow up with my neurologist and for my first in a series of sympathetic nerve blocks.

The neurologist said my CRPS/RSD was “unchanged” since my last visit 3 months ago, but was hopeful for positive results from the nerve block.

The nerve block procedure was not fun, by any stretch, but the results were definitely worth it. The doctor said that it was a success. The next step is to work on a treatment plan, schedule a series of more injections, and hopefully drive the CRPS into remission. Or at least significantly decrease the severity.

14086345_10155237081728146_2012394769193488733_o

My hope is high and fingers are crossed.

My Leg: The Newest Housewife of Beverly Hills

In order to try to stop the continuous, persistent shaking in my leg, my neurologist wrote a prescription for valium. He said if this doesn’t help then he might try botox injections. Valium. And Botox. Apparently my leg is having an identity crisis and thinks it is a middle-aged beverly hills housewife.