For followers and readers of my Blog it is "old news" that I had a procedure called Deep Brain Stimulation (DBS) in an attempt to alleviate some of my Tourette Symptoms. On January 18th of this year I had a follow-up appointment with my Neurosurgeon to discuss my progress with this experimental treatment. During the visit I expressed my frustration with DBS and its' failure to lessen my Tourette's most outward signs, the worst of which is the utterance of profane and often racial remarks (Corprolalia). During the appointment my physician and I were engaged in conversation regarding the placement of the electrodes deep within my brains delicate structures, and I mentioned to him an event that occured during the original surgical intervention that has left me wondering: what if things had transpired differently? What if my electrodes were in a slightly different location than they currently are in? These questions stem from an incident which I vividly recall when the electrodes were being inserted in the operating room, as I lyed there wide awake with no sedation or analgesia, my head screwed to a frame and the frame bolted to the operating table. My tics were so bad at this time that you could visibly see the table shaking, and the vocalizations were so loud that I wondered if I was compromising the surgeons concentration. As the drilling of my skull was finalized, and the right electrode was about to be inserted in the burrhole, I remembered my previous pre-op discussions with the doctor regarding the placement of the wire.
 |
| Preparing for electrode insertion |
Before the procedure he explained to me that the electrode would be slowly advanced into my brain until a pre-determined "target" area was reached (this area was identified by a pre-op CT Scan and MRI, after which the test results were merged using a powerful computer program, and the area was identified and marked on the head frame that rendered me motionless). The doctor also explained to me that this "target" was no bigger than a small grain of rice, and its' location was paramount to me seeing any potential positive outcome from the surgical procedure. Upon inserting the right electrode into the aforementioned burrhole, I can distinctly remember my Neurosurgeon counting down the electrode's course through my brain; "6mm to desired target, 5mm to desired target", and so on. I can remember holding my breath with all the excitement of a child on Christmas Eve, and when he announced "target reached", I burst into tears and my tics and vocalizations immediately ceased. I looked around the operating room in disbelief as the nurses, doctors and technicians breathed a sigh of relief. No sooner than this had occurred, I began sobbing uncontrollably and my vital signs took a turn for the worse. I can remember one nurse saying "he's not looking good", and another one said "his blood pressure isn't fairing well". What was happening to me, I thought? I have no Tourette Symptoms and everyone is overacting. My surgeon spoke to me; "Your lead (electrode) is in too far". "We are going to withdraw it 1mm because it is apparently in an area that is not safe, and monitor your vital signs very closely". By the time he said this the electrode was repositioned, my crying stopped, and my tics and vocalizations returned with full recourse. Also at this time my vital signs began to stabilize, and my Neurosurgeon said that he would leave the electrode in its' current position even though this would abandon the predetermined target, and that is where it remains today.
This is where my doctor and I's conversation continues at the January 18th appointment. I disscussed with him the possibility of undergoing surgery again in order to advance the electrode 1mm to the original target; and keeping an open mind as he always does, he said he would thoroughly revisit my medical records and see if this was a possibility. I told him that I firmly believe the original target was the appropriate location, and what he had assumed was a bad placement because of my emotional changes, were actually my tears of joy from the weight of living with Tourette Syndrome for 40 years suddenly being lifted from my shoulders. He explained the risks of performing the surgery again compared with the potential rewards, and said that he would get back with me in a short time with his opinion regarding such. That leaves my wife and I with some difficult decisions to make. Should I repeat the surgery even though the potential risks outweigh the possible benefits? Or should I just abandon this idea alltogether and live with the uncertainty of always wondering what if? Whatever decision we make; however, I will have to deal with for the rest of my life. I know that through prayer the right answer will be revealed to me, and if enough is enough that is good enough for me.
