Hello from The NeuroScience Department at Stanford. Today is Thursday December 3, 2020. This afternoon, I had a very long and informative appointment with a NeuroSurgeon who does the DBS procedure. In case you are not sure what DBS stands for, it translates to Deep Brain Stimulation. From my understanding, DBS is a procedure where a device (much like a heart pace maker), is implanted in your chest. Electrodes are positioned deep within the brain and like a pace maker, electric pulses are transmitted to the brain to regulate your brain activity. So, DBS would help to substantially reduce any tremors, stiffness, slowness and dyskinesia I might have. Potentially, if all goes well with the DBS surgery, (and I cannot see why it would not) my meds would be lowered by 50%. Up until recently, I was mistakenly under the impression that you have to be elderly and in bad shape to be considered for this procedure. My Dr. explained that because I am so healthy and Young Onset, it is better to have the procedure when you are doing so well. Given that almost every single medicine I have tried has made me so sick, I am a great candidate for this procedure.
Before I even saw the NeuroSurgeon, one of his surgical team nurses met with me for about an hour. She had tons and tons of questions for me to answer (verbally). The first of which was for me to tell my story of first symptoms on up to today. I knew I would love the doctor before I even met him because when she walked in, she took a double take at my glasses and said "Wow! I love your glasses"! At that moment, I knew I had found my team. What I mean by "team" is that she looked at me as a human being (by noticing something about me rather than a science experiment to pump full of drugs and false hope). The many other Dr's I had seen were most concerned about upping my dosages and adding new meds to combat the side effects of the current meds (I am still working on that blog entry on this subject).
I had many questions and concerns to share with her and she answered each one flawlessly and with great care. We talked a lot about the recovery room after surgery. I told her that among my biggest fears re surgery, (and I have lots of fears) is that when I wake up in the recovery room, there will be no one there to greet me or even notice I am awake. She tried her best to put my fears to rest by explaining that there will be an entire team of nurses to help me and that I would never ever be left alone. My biggest fear of all...... They will have to shave my head. She quickly told me that the Dr. would not touch a hair on my head. What a relief I felt to hear that. Like my mum used to say "That was music to my ears". Once she had answered all of my questions, she excused herself and told me the Dr. would be right in. About ten minutes later, the door opened and in walked a very hip, well dressed young Dr. I knew what he looked like, because I had looked him up the day before and watched a Youtube video starring him! He immediately said "Wow! Tracy (the nurse I had just meet with) was right! Those are some cool looking glasses"! How is that not an ice breaker? He spent about an hour with me, thoroughly explaining the procedure in terms that I understood. He also answered all of my questions flawlessly. No question I had was "ridiculous" in his eyes. Once I had no more questions, he asked me if I would like to look at a virtual brain with the DBS wires implanted. Ummmm..... He assured me that I would not be looking at graphic images. He left and then a minute later in walks a woman with a huge tv screen. On that screen, she had engineered (through computer graphics) a multi dimensional view of the brain from different angles with the wires in place. This way, I could get a sense of what the Dr. had discussed with me. It was truly fascinating and made the thought of it less frightening.
So here is the skinny on the DBS procedure. There are actually two procedures that I will undergo, about two weeks apart. During the first procedure, microscopic wires or "leads" will be strategically placed deep within my brain. During the second procedure, a Pacemaker will be inserted directly under my skin on the right side of my chest (I actually have a Pacemaker on the left side). Once the Pacer is implanted, the wires that were placed in my brain two weeks prior, will be stretched and connected to the Pacer. Once everything heals, I will see my regular Movement Disorder Specialist who will program the Pacer specifically for what my brain needs. He also made it clear that it will most likely take more than one appointment to get the Pacer dialed in. Once it is functioning properly, I will begin weaning down on my meds. Sounds easy peasy right? Not when you are me and have many fears. This is a huge undertaking on my part, but the silver lining is that I will have my life back! How can I possibly say no to this once in a lifetime opportunity which will be life changing. I am in! The next step is for one of the scheduling nurses to contact me to set up my procedure dates, as well as an MRI date. I will keep you posted as to next steps. One last note.... This is not a cure, but will enhance the quality of my life ten fold!
❤️ The Famous Red Glasses ❤️