Tuesday, July 8, 2014

My DBS Surgery Blogs - Four More Sleeps Until Surgery

These are my before and after surgery experience blog posts from 2008. They were originally posted on Triond, and I had posted the links here on my blog, but the links are not working consistently anymore. They say that everything posted on the internet stays there in the cyber ether somewhere, but I think it gets harder to find after awhile. If you have the patience to reload each link 5 or 6 times, click your heels together, and hold your tongue just right, you can get them to load most of the time, but I thought these posts would be much easier to read as a continuing story if I post the entire original articles here. Maybe I could add updates where relevant. Some of the entries may have been  composed while still under the influence of hospital drugs.

Four More Sleeps until SurgeryApril 7, 2008

Greetings to my family, friends, and readers! I said that I would keep you updated on my progress as I journey through this maze called Life with Parkinson’s disease. Lord willing, I will be undergoing surgery on Thursday, April 10, 2008 to have a deep brain stimulation device implanted in my brain. This is considered to be elective surgery, so I have been warned that the surgery date could be bumped if someone with a more urgent condition needs the operating room. My neurologist once had a patient all prepped for surgery, with the halo frame in place, when they were informed that the OR was needed for an emergency surgery. My prayer is that if my surgery gets bumped, it would be before the IV needle is in place.

I have been waiting for this surgery for about two years now, so it seems rather surreal that it is now so close to actually happening! Friends have been asking if I am excited or anxious, and I say YES! The anticipation of fewer medications and therefore less severe side effects is very exciting, but I am also anxious about the actual surgery and possible complications. This is brain surgery, after all! It will be an eight to ten hour surgery, and I will be awake for most of it. They need a conscious patient in order to map out the brain and find the best spot to implant the device. After that, I will be put under general anesthesia to have a battery implanted under my collarbone. Maybe while they are at it, I could have some Borg technology implants just like Seven-of-Nine on Star Trek Voyager. Or perhaps they will find the loose wire in the part of my brain that used to be able to do math. With a tweak here or there, maybe I could finally be able to figure out where the train traveling west at 60 kilometers per hour will collide with the car traveling south that has stalled on the tracks.

All kidding aside, this surgery is designed to replace at least some of the Parkinson’s medications with electric stimulation. Contrary to what Rush Limbaugh and anyone who believes his uneducated slander of Michael J. Fox’s appearance on a TV ad, the uncontrollable swaying movement (my sister has told me it looks almost like I have a desperate need to use the bathroom) is actually a side effect of the medications. This movement is quite painful, especially if I try to control it. My handwriting is hardly legible anymore, and the reason that I am able to type this article is the magic of the delete key, which enables me to eventually create clean copy. Without medication, my body becomes rigid, with overwhelmingly painful muscle cramps and spasms. My days consist of a never-ending cycle between dystonia (painful muscle cramps) and dyskinesia (uncontrollable movement). The desired outcome of surgery is for the DBS device to make the effectiveness of medication more even.

My knowledge of Parkinson’s disease, its symptoms and treatments is based solely on my own experience and research. I have no medical credentials, and I am not endorsing any product or procedure. This is just my story. If anyone reading this is also dealing with Parkinson’s, especially young adult onset, I would love to hear from you.

Update July 8, 2014:
My neurosurgeon was unable to find the loose wires in my brain, and I don't think he even looked into sourcing any Borg technology. But I guess brain surgeons are pretty busy.

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