Yes, it worked!
Many of you know that I had surgery on Feb. 4 to implant a second stimulator in my brain. The stimulator is designed to relieve some of the symptoms of Parkinsons disease. A similar procedure in November 2009 nearly eliminated the tremor and the stiffness on my right side; this time, I was hoping for a similar victory on my left side.
Did we hit a home run, like we did the first time? No. I’d say it’s more like a triple, because I think I’ll still have to take some medication to control the tremor on the left side. I still have some tremor in the “off” medicine state.
But we are now in the process of reducing the meds, and their undesirable side effects. The tremor is vastly reduced in terms of intensity and duration. We still have some room to tweak the settings on the new device. This is all great news.
Both the doctor and I were shocked at how bad my left side had become in recent months. I had come off my meds for about 18 hours before the programming session, and I was a mess. We both noticed, for the first time, that my left leg was involved.
So let’s put this latest advance in its proper context. Without some sort of dramatic intervention, like the surgery, I would be in seriously bad condition. We’re talking about not being able to perform many of the so-called activities of daily living, such as feeding and dressing and toileting one’s self.
This technology is giving me a new lease on life. I am very fortunate, indeed. I look forward to returning the favor.
Sometimes following DBS surgery, PD symptoms abate for a period of time. This effect, called micro-lesioning, is something I don’t really understand. But I can tell you that I haven’t taken any Parkinson’s meds since noon, and I am currently tremor free on my left side — the side that we were hoping to fix. I don’t know how long it will last, or if it hints at future success when we do the initial programming. But it is certainly welcome!
I’m not at my best when I’m taking large volumes of Percoset, but I did want to check in with a few notes about the DBS experience this time around.
We’re back at the hotel on this cold Sunday, having been discharged yesteday. The second DBS procedure was a success, despite some issues with the placement of the recording electrode (this is a device that aids in placement of the lead, which is the part that is permanently implanted in the brain; it detects the unique electrical activity of the neurons that are layered near the target zone, and the signal that is detected is played back as audio). I’m keeping solid food down today.
The biggest difference between this surgery and the first was in not having complications from inserting a Foley catheter. The first time around, the Foley did not go in easily, resulting in a literal and procedural mess. The routine was disrupted because a urologist and nurse had to scrub in that morning; to minimize my discomfort and to keep me from freaking out, I received more anesthesia than usual.
So this time, I went with a Texas (condom) catheter, and that meant I was far more alert and aware of what was happening during the, uh, good parts. That included the drilling of the burr hole (surprisingly easy), trimming the edge of that hole (“you’re going to hear me sawing”), and the banter between surgeon and specialist as to whether they had nailed the placement of the lead (the audio signal of each type of neuron is unique, and that’s how the surgeon knows he has hit the target). Every indication is yes, they did nail the placement (to a 1 mm spot near the top of the brain stem).
We will know for sure on Feb. 24, when the device is turned on for the first time and the initial settings are dialed in. I do believe I had two instances of relief during the implantation, and if we are right about this, Feb. 24 will be a happy day indeed!
At some point today, I’l get the call from the admitting office at Mount Sinai. At this time tomorrow, the procedure for installing another implant in my brain will be in progress.
The run-up to the surgery has been uneventful. No testing needed this time, just show up and that’s it. It leaves me feeling a bit more disconnected from the process, which has been both good and not so good.
The hardest part has been shrugging off the pre-surgery jitters. I’m in “the zone” where I will allow nothing to bother me. Die-hard optimism has worked for me in the past, and it will work for me again!
Time for the last shower I’ll have for a couple of weeks (!), and to get the protein shake that I’ll be drinking at 9 pm. Charge up the iPod, have it ready in case I’m stuck near a moaner. What am I missing?
Two weeks from today, if all goes as planned, I should be snoozing comfortably in a room at Mount Sinai Medical Center after a successful day in surgery. I’ll define success as having experienced relief from my Parkinson’s symptoms on the left side of my body.
I had the same procedure in November 2009 for the right side of my body, so I know what I’m in for this time around. Does that make it any easier this time around? Well, not really. I’m not exactly looking forward to having the halo screwed on, but I can deal.
I’ve spent the past couple of weeks trying to wind down my various commitments so I can focus on getting my body into the best possible shape. So far so good. I have let myself gain a bit in body fat, anticipating some weight loss around surgery.
This time I have no pre-op tests except for the ones done when I check in the day before, and nothing post-op except for suture removal and, of course, the initial programming session on Feb. 24. That doesn’t give me a lot to write about, but I’ll do my best. And I will use Facebook this time, too. Just don’t ask me to tweet.
A friend who had the DBS procedure a couple of years ahead of me talks of his anniversary as his rebirth day. For good reason, too: Despite his very advanced condition, he has enjoyed a huge amount of relief ever since.
Yesterday was my rebirth day, and today is my birthday. I’ll get a few birthday well-wishes from family and friends, maybe even a few presents (here’s hoping!). The rebirth day was one spent in reflection, doing a few things that I wouldn’t have been doing more than a year ago. I’ve been learning to play the bass guitar, and I had my lesson yesterday. I had the motivation to prep the Porsche for winter storage the way it ought to be prepped. Raked some leaves, too.
Little things, sure, but there’s a joy in each of them that had been dimmed slightly in past years. Here’s to the coming year and all the joys and trials that it will bring.
I’ve put in my dibs for a surgery date that falls during the February vacation week. Hopefully the kids will be too distracted by their first trip to the Big Apple to notice my new haircut!
To say I’m looking forward to this is an understatement. We hiked my meds ever so slightly last week, and I can already feel the dyskinesia and increased muscle tone on my right (stimulated) side. It’s especially uncomfortable in my right forearm and bicep. The second stimulator ought to help me drop the meds that are causing this and other problems.
New imaging technologies are leading to new insight into the way the brain as a whole is affected by everything from dyslexia to stroke to mental illness, according to a report from the American Neurological Association’s annual meeting this week in San Francisco.
That should be good news to people with Parkinson’s, and the researchers who love them. Dopamine replacement therapy has helped many of us, but it’s never been enough by itself to calm tremors or ease stiffness and rigidity, or help restore cognition. It’s long been apparent that multiple systems are affected by the loss of dopamine, and that there may very well be other neurotransmitters that are out of whack — substances that modern science hasn’t yet identified.
The brain may be yielding its secrets at an accelerating rate, but we still know only a tiny fraction of what’s really in there.