Ahhh....where to begin? I guess at the beginning. :)
I was EXTREMELY nervous about this appointment. I admitted to my parents after it was all done and over with that I would use the word "terrified" to describe my feelings towards this appointment. And for what? I was just going to TALK to the neurosurgeon - he wasn't actually going to be performing any brain surgery on me that day or anything!!! I kept myself distracted by working half a day. It did the trick! But then, I had two and a half hours in the car to think and worry and get myself all worked up again. I know this isn't right. I know God's got all of this, but if you don't believe how terrified I was, it's all in the numbers. A medical assistant took my blood pressure (before the appointment - why can't they take it AFTER?!!) and it showed how terrified I was: 146/101. I have NEVER EVER had a blood pressure that high. It's usually spot on 120/80. The nurse commented on it and I told her I was nervous. Mom told me later that she knew it was high (she couldn't see the numbers on the machine from where she was sitting) because the red light on the BP machine lit up and started beeping. As we were waiting for the surgeon to come in, I obsessed at how high it was. Mom told me to take deep breaths and let them out slowly. The nurse had commented that I should find her after the appointment and she would take it again.
After a weight and blood pressure check, we were led to an exam room to meet the neurosurgeon. I had NO idea what to expect. Later that night, I told my mom and dad I think I was expecting the neurosurgeon to come in and say, that even though the committee agreed that deep brain stimulation would work for me, he personally didn't agree and that he would say it was up to me to decide, but in his opinion, it wouldn't work. But - he didn't say that!!
Dr. K is the neurosurgeon. Even though I "read-up" on him with the information that was sent to me and what I could find on the Internet, I didn't know what to expect until I met him in person. My Knoxville neurologist said I would love him and the nurse who took my blood pressure said the same thing, but you just never know. ;) I was almost instantly put to ease. After introductions he wanted to hear my story, from me. He said he had lots of notes and I was discussed at length at the DBS conference and he saw the video that was taped of me at the physical therapist's office, but he wanted to hear my story, from me. So, I told it to him. He had a few questions and I answered them. His demeanor is what put me at ease. He was very comfortable, but just as confident. I told a co-worker today that he reminded me of "Dr. Charles" played by Oliver Platt in the new NBC show "Chicago Med". He kind of even looked like him a little. :) He brought all the "hardware" that he uses in the DBS surgeries and let me look at it and touch it and get comfortable with it. One thing I was scared of (and realized this just yesterday), was the "halo" I thought he'd have to put on me. I've watched WAY too many episodes of "ER" and "House" and every other medical show you can think of (including "Chicago Med"), so I thought I knew what awaited me, but, surprisingly (to me!), I was WRONG!!!!! I've never been so thankful to be wrong before - ha! Dr. K. actually invented what's going to be used on me and it's all done through 3D printing. He came up with a plastic (I'm guessing here, because I can't remember what he said it was really made of) helmet like thing that looked MUCH more inviting then the standard halo thing that was freaking me out! Dr. K. went through and explained in detail each and every surgery (there are definitely 3 of them now. I know this for sure!!) and what to expect and what would happen. His nurse had come in before he did and gave Mom and me each a copy of an 8-page booklet that she said explained everything - and, it did! Later Dr. K. said that he wrote the whole booklet. I'm kind of impressed because it's in laymen terms and I understand everything - haha!! I thought that if a neurosurgeon wrote it, it may go over my head (no pun intended!). Dr. K. also told me and Mom that it was a good thing I was having this surgery now. He said he's seen way too many of his patients get to the point where dystonia leaves them with such a huge curvature of their spine that they have to go through painful back surgery to get it straightened out. He's convinced that this surgery will help me immensely. He said it'll take the curving of my foot inwards away, it'll loosen the muscles in my leg and foot so they aren't as tight and drawn up; it'll help so much. I told him that I was speaking with someone the other day and they said that I didn't look that different from anyone else. I mean, they see the foot drawing up, but nothing horrific. I told them that the best way I could describe it to them was that I felt "twisty" inside. To this Dr. K. said that I hit the nail on the head by saying that, because I am all "twisty" inside. That's what dystonia does. He loved my word to describe it! I was told the appointment with Dr. K would last 45 minutes. Two hours after we came, we left. He spent that much time with us. We left around 5:15pm and by this time, the neurology clinic was almost empty. I couldn't find the nurse who initially took my blood pressure so I didn't get it re-taken, but I'm positive it was MUCH lower. I even told Dr. K. as he was wrapping up our session, that he made me feel much more comfortable with what was going to happen. He said that was good, but reminded me it was still brain surgery. There is a 1% risk that I could have a stroke or bleeding or infection from any part of any of the surgeries. And there's always the possibility of death. But then again they HAVE to say death is always a possibility! Death is a possibility just walking across the street!
Dr. K. explained that since I already have a shunt inserted (although turned off), he didn't want to mess with it. In other words, he wasn't going to remove it and he was going to try and stay away from it during the surgery. I tell you this because he said that the wires that run down to the pacemaker like battery usually would run down the right side of my neck (since I'm having the DBS on the right side of my brain), but in my case, since I already have the shunt wires running down the right side of my neck and he didn't want the shunt wires touching the DBS wires. He said he would run the wires from the right side of my brain to the left side and have them run down the left side of my neck. At this, I truly felt like I'm going to become bionic. He said he'll place the pacemaker like battery under my collar bone. Then he looked at me for a minute and said he would actually put the battery device under a muscle. He said that way it wouldn't be as visible as just installing it like he normally does. He said since I was thin (I'm STILL getting used to being called that!), if he installed it like he normally does it would protrude in a very visible way. I had to give him credit for taking my vanity into consideration! Towards the end of the appointment, Mom broached the topic of hair. Dr. K. looked at me and he said something to the effect of "when I saw your beautiful hair, I didn't want to broach the topic of what I'd have to do to it. I was stalling as long as possible." And that's when I learned the awful truth - I'll have to lose ALL of it. He said that, unlike the shunt surgery where the surgeon goes in through one spot in the brain (one hole), DBS requires access to four different spots (4 holes). He did say, that he could do the surgery and spare as much hair as possible, but he said I wouldn't like the way I would look because I'd have one swatch of hair in the front and one in the back. He said some of his previous patients did that and then the next time he saw them, they had decided to just shave it all off. He also said that if I came up with a way to spare more hair, he would love to hear about it! So, I'm coming to terms with losing it. I told Mom and Dad that I didn't think I'd be that self conscious about it had I not already had the shunt surgery. Because of that surgery, there's already a scar and a hole in my head. To which one of them (I won't say which one!) said "I always thought you had a hole in your head!" :) Sorry Mom and Dad - I thought it was too funny not to share! On the subject of a hole in the head: Dr. K. said that for shunt placement, surgeons usually leave the hole in the head (why, I don't know!) but when he does the DBS surgery, he'll actually close the hole he makes with cement. So alas, I will still only have one hole in my head. :) It's the little things! Maybe I should ask him if he could close the shunt hole with the cement?! Just a thought. But back to the subject of hair loss. I may have to ask for the service of my friend Carrie, in cutting it all off. I'm not sure I could actually go to a salon and do it. I know they would do it for me, I just don't want to leave a salon with no hair! After it's gone, who knows? I do hope it comes back just as curly (or curlier) as it is now. In the meantime, maybe I'll get a wig (I've always wanted to be a red-head (and yes, I'm serious!)) Or maybe just a hat or a wrap will do. I'll cross that bridge when I come to it.
It kind of looks like I'm going to be crossing that bridge sooner rather than later (which I am very happy about!). Not only did I meet the neurosurgeon, I scheduled all the surgeries. And they're coming up soon! February 5 I have pre-op appointments scheduled. Then - 3 weeks of surgeries.
February 16 - Stage 1 surgery: Bone Markers and Images. I'll go under general anesthesia. I'll have a CT scan and an MRI scan and bone markers will be inserted into my skull. Dr. K. showed them to Mom and me and they look just like something you would find at a hardware store. The CT and MRI are done to create a picture of my brain. They are done under general anesthesia so that they can get the "perfect" image without me accidentally moving or something like that. It's an outpatient procedure, so I'll get to go home that day. It'll take 2-4 hours. Once the CT and MRI are done they send them to Maine (or maybe it was Massachusetts?) where a company creates a 3D printer head piece and sends it back down here to TN. It's personally made for my head. Kind of cool! It takes about 3 or 4 days to make the piece and get it sent back to Vanderbilt. Dr. K. said that after this surgery, I could go to my own home and Mom and Dad (or anyone else for that matter!) wouldn't have to watch over me. I forgot to ask him if I could have the head piece. I mean, it's made just for me, so...maybe I could have it?! I know, I'm weird like that! But while I'm at it, maybe he'll let me keep the bone marker screws too after they come out. I'll have to ask!
February 23 - Stage 2 surgery: Deep Brain Stimulator Electrode Implant. This is the "fun" surgery (I say sarcastically, but there is a tiny part of me that's intrigued by it too). For this surgery, I'll be awake. Dr. K. explained that while he does the surgery, Dr. T. (my Nashville neurologist) will be in the operating room with us and he'll be asking me questions. Dr. K. said he'll have to test several spots until he finds the "sweet spot" - the spot that uniquely relieves me of symptoms. He said it's different in each patient. Although he (and the other neurosurgeons) know where in the brain to go, each person has individual "sweet spots" that work for them. He told Mom and me that when he first started doing DBS surgery 20 years ago, this part of the surgery took 15 hours. They have now gotten it down to between 3-5 hours. Mine should be a little less just because I'm not having both sides of my brain done - just the right. Even though this is the only surgery that I'll be awake for, this is also the only surgery that I have to spend the night in the hospital for, but I should be able to go home the next day. Dr. K. said that after this surgery, Mom and Dad may want to keep an eye on me. I'm not exactly sure what he meant by that (haha), but Mom said he probably wants them to watch me so that I don't fall or if I have any issues whatsoever someone will be there to help me.
February 29 (yes, February 29 - this year is a Leap Year. Kind of appropriate for me as I hope to be leaping and dancing and walking!!) - Stage 3 surgery: DBS Generator Implant and Wire Hook-Up. This is the final surgery. I'll be put under general anesthesia and the pulse generator will be implanted near my collarbone. Then the extension wire will be threaded and connected from the pulse generator to the electrodes in my brain. This surgery should take 1-2 hours and is an out-patient procedure.
Then, 4 to 6 weeks after the February 29 surgery, I'll return to see my neurologist, Dr. T. and he will program the device and teach me how to use the handheld controller. Yes, that's right, I get to use a REMOTE CONTROL!!!! Like I said earlier: it's the little things!!! This is probably the one thing I was most excited about. I blame it on the TV geek in me :) It actually does look like a TV remote.
I returned to work today where I had to get the ball rolling on several things. First, I had to tell my boss I'd be out for at least 4 weeks (if not more). He was awesome about it. Then, I had to call the HR department and get the ball rolling on short term disability. I was floored. I know that I work for an excellent company, but what HR told me today just reinforced it all that much more. Since I've worked here for 10 years, I have the ability to take 10 weeks off and get paid 100% of my salary. After 10 weeks, I get paid 60%. Thank you, Jesus for such a wonderful company!! But, I'm hopeful I'll only have to take 4 weeks off. Then I had to call my insurance company and get the ball rolling on insurance approval for all of this. Actually, Vanderbilt is contacting them as well. So we're hitting them from every angle. Please pray that my insurance will approve and cover everything. They have so far, for which I'm exceedingly thankful for. I'm just trusting that God will see everything through. "Ask and you shall receive."
So that's what's up. I know that this was another extremely long post, so if you made it this far - thank you so much for reading. I thank you even more for all the prayers. I'm truly blessed. That's what it all comes down to. I'm blessed and I know - God's Got This!!!!!
