Wednesday, July 16, 2014

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.]

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