DBS implant turned on at last!

Here is the last of a series I wrote in 2008 when I had surgery to implant a Deep Brain Stimulator to control symptoms of Parkinson's disease:

June 12, 2008: Yesterday I had my first “programming” session to adjust the settings on my implant. This experience seemed like something out of science fiction (as has this whole process). Renee, the neurological nurse who programmed me, used a remote control device to communicate with the implanted technology. She held the remote over the spot just under my collarbone where the battery pack was implanted. The battery pack in turn communicated with the stimulation device implanted deep inside my brain, with wires tunneled under my skin to connect the two. Renee then used a hand held tablet gizmo which somewhat resembled the medical tricorders used by the doctors on Star Trek. She tapped on the screen with a stylus to individually set the levels of stimulation of eight electrodes, four of which were hooked to brain cells on each side of my brain. The electrodes on the left side of my brain control the movement and sensations of the right side of my body, and vise versa. My Parkinson’s symptoms primarily affect the left side of my body, so she started with the right side of my brain.

As Renee activated each electrode with her tablet gizmo, I felt different sensations over my body. And no, unlike the woman in the TV commercial, I did not smell burnt toast. Mostly, it was like electrical tingling in different body parts. Sometimes my eyes would react and go out of focus, like they do when I try to stare at those 3D drawings in the newspaper where you have to stare until you see a 3D image. After about 2½ hours of this testing, she set the levels and sent me off for lunch. After lunch, I went back, and she showed me how to use my own remote control at home.

So now I can control my own DBS levels, within parameters that Renee set up for me. If I get dystonic (which means cramping muscles, unbelievable pain – where my toes curl under, my ankles turn outward, my arms raise up elbows first and I can’t lower them, my neck twists to the left and down – and I’m grateful because some Parkinson’s patients get these cramps in their facial muscles and that hasn’t happened to me yet), I can turn up the stimulation and get some dopamine flowing. When I get dykinetic (which is a side effect of my medication and results in uncontrollable swaying, dancing movements that my sister says looks like I desperately need to use the bathroom), I can turn down the volume. Either way, I get a quick reaction, which is impossible with pills.

I think I might enjoy living like a Borg (for you non-trekkies  out there, the Borg are an alien race who are part humanoid but have machine parts implanted). I still have Parkinson’s disease, I’m still in a great deal of pain, and it is still very difficult to do much of anything, but now I look cool! (Except for the patch of very short gray hair right on the top of my head and the inch of gray roots that I can’t dye until the incisions heal. Yeah – besides that, I look like a very cool 42 year old mom with my remote control.)

The Saga of my DBS surgery - More Waiting

Part 6 – More Waiting

May 5, 2008. I hope that the hard parts are over now. [I should have known better!] The DBS device was implanted on April 10.  That was an eleven hour surgery that I had to be awake for so that my brain could be mapped out.  Then, a week later, April 17, I went back to have the battery pack installed under my collar bone, with wires tunneled down the side of my head and neck to join the battery to the device. Before I left the hospital, my neurosurgeon turned the device on at a very low setting just so my body gets used to it.

The next step is to wait six weeks to heal before going in to have the device programmed. They do this in stages as well – so I have three appointments in June to get hooked up to a computer. This is a rather amazing medical technology. I will have to avoid magnets (no airport security for me!), for the rest of my life, and always carry a remote control in case the device is accidentally turned off.

You may have noticed that I have not been swaying and squirming as much as before. Apparently the probing done during the surgery before the permanent leads were installed has already had some effect in reducing the side effects of the medication. That benefit is wearing off. I will be taking medication as usual during this six week interim, so I am back to my “Roller Coaster” days that start off with the normal Parkinson’s symptoms of stiffness and painful dystonic muscle cramps, and cycles of dyskinesia (uncontrollable movement) during the day.

This surgery is not a cure for Parkinson’s disease. At best, it will buy me five to ten years of symptom relief with fewer side effects than medication. But perhaps by then there will be some medical breakthrough, so I won’t need a day pass from the nursing home to attend the girls’ weddings. [As of today, those events are still in the future.]

DBS Surgery Done At Last

Originally published on Triond in April, 2008

Part 5 of my ongoing Saga of DBS Surgery

Part 4 ended with me leaving the hospital. I told you about my wonderfully sweet, sensitive, generous Hubby who took me out for ice cream on the way home. I always say that if pain medication does't work, try ice cream. I hope my girls don’t read this. I am still paying for telling them that the best remedy for a sore throat is Coke. They've had a lot of sore throats since then.

In case you are running to your local bookstore to buy a copy of my manual “How to Train a Husband by getting a chronic, debilitating disease”, don’t bother. For one thing, I haven’t written that book yet. For another, even though I say that “Except for the constant pain and the inability to do much of anything, its not such a bad life”, I really would not recommend my method. A while ago, Munchkinette Number The Other One said that she would like to have Parkinson’s when she grows up so that she won’t have to work. Even though they see me every day, it is very hard for them to grasp how the pain from Fibromyalgia (which was diagnosed about 8 years ago) and Parkinson’s is really a bit different than the pain from stubbing your toe. I try not to remind them too often, because stubbing your toe really does hurt and they need Mommy’s comfort and attention. I was rather embarrassed once in a store when the clerk was complaining about a hangnail, and I told her that I have Parkinson’s disease. Now there’s a conversation ender! But it worked out for good – she told me that her brother also has young onset Parkinson’s, so my rudeness led to a deeper conversation.

I have to wait now for six weeks for the incisions to heal before they start to program the device. For now, it is just turned on at a low setting so that my body can get used to it while I wait. I have not had much dyskinesia (the involuntary dancing motion which is a side effect of medication), because the probing done during the surgery has already had an effect. That effect is only temporary, so for now I am taking my medications as usual.

Thank you for all your thoughts and prayers.