My doctor asked questions as to why I felt ready this time as opposed to some apprehension the last time. My first answer was that I didn’t want to take over 20 pills a day longer than I had to. (All those drugs can’t really be good for you, right?) I had read and heard personal accounts of people who had the Deep Brain Stimulation who had their medication intake reduced up to fifty percent or more. I liked the thought of that because it that would also mean the symptoms you were being treated for through drugs, were now being controlled without them (or as many of them).
Deep brain stimulation (DBS) is a surgical procedure that is used to treat moderate to severe symptoms of Parkinson’s disease and other ailments in people with MS, essential tremor, and more. A wire electrode is inserted into a very small, specific area of the brain, known as the basal ganglia. This electrode(s) is connected by a wire to a pulse generator, which is implanted under the skin just below the collarbone. Patients can have one generator or two, depending on whether they have had one or two DBS procedures. Symptoms of PD are lessened by the stimulation that the brain now receives from the pulse generator. Patients have said the worst part of the entire procedure is having the clamps placed on your head. However, more recently I have heard that the worst part for some was the numbing procedure and for others, it was the pain associated with having the pulse generator inserted into the chest area (which notably subsides within two weeks).
According to Dr. Santiago, the hospital stay would be about two days. There are almost 25,000 people worldwide that have had DBS as of the date of this writing (September, 2010). After the first of February 2011, hopefully there will be over 25,001 (me).
~ ~ ~
September 20, 2010
The first order of the day down in Phoenix, I was to meet with the neuropsychologist. For three hours I repeated lists of words, made lists of words,
looked at lists of words, thought about lists of words… I added, I subtracted, I divided, I multiplied and I thanked God there was no geometry.
I was asked various and assorted questions like – who was the president, who Sacajawea was, what continent Egypt was on and more. I was given tests with shapes to match, dots to connect, and other (what almost seem like) games, in order to test my cognitive thinking. This was the beginning of my second preparation for DBS.
~ ~ ~
It’s been over six years since I was ‘officially’ diagnosed with Young Onset Parkinson’s disease. I can, however, confidently trace the symptoms back to eighteen years prior – to the age of 32, when I believe (and so does my doctor) I was misdiagnosed with Lupus.
I mentioned earlier that a couple of years following my PD diagnosis, I was placed on disability per my doctor’d recommendation. The decision to go on disability was difficult. There are many emotions that came with it. Fortunately my doctor talked with me through them all and I applied.
Like any chronic illness/disease, each day is unpredictable in regards of what to expect. Will you have the energy to do the things on your ‘to do’ list (no matter how much shorter you now make those lists)? Will you have the energy to fight through the physical pain? Will your muscles work together with the commands given by your brain? These are questions you don’t consciously ask. You just deal with your disease. If your energy isn’t there, things are put off. If your pain is intolerable, you take it easy. If your muscles refuse to cooperate, there isn’t a whole lot you can do about it. Your struggle increases.
After the neuropsychological tests were completed, my husband and I then met with the neuropsychologist to go over the results. He confirmed that my cognitive thinking is still intact and affirmed my neurologist’s opinion, believing me to be a good candidate for the DBS procedure.
After completing that testing, I thought about the fact that I should probably be nervous, but I wasn’t. I think there was a two-fold reason. I trust God and I trust my doctor. I had no reason to fear the ‘what-ifs’.
That afternoon brought us to the imaging center where I had an appointment to have an MRI done of my brain. An MRI, also known as a magnetic resonance image, is performed per the neurologist’s request to see if there are any abnormalities, to confirm that yes—the patient indeed has a brain (just kidding), but also to ‘map’ out the brain, deciding where exactly the wire electrode will strategically be placed.
After covering my feet with a warm cotton throw, inserting ear plugs into my ears and padding my head to keep it still, the technician began the process by rolling me into the large cylinder where the images would be taken. She barely began when I pushed the help button to tell her something wasn’t right – that I felt what seemed like an electric current running down my arms. She came back in the room I was in and after pulling me out of the cylinder, repositioned my arm—after I removed my magnetic hotel room card key from my pants pocket. Related? Not certain. I do know, however, that my hotel room key didn’t work after that and there was no more sensation of al electric running through me.
The machine pounded out what sounded like a bongo drummer tapping six times on his drum, followed by an electric guitar pounding out the same set of beats. The next song sounded as if an oboe and an alto sax were playing the same note without a breath, while someone on the piano pounded out a matching note that became flatter and flatter as it echoed in my ears. There was another image taken, whose melody sounded like a jackhammer. Before I knew it, the testing and concert had ended and I was glad as I didn’t care for the music much.
That completed day one in Phoenix. Day two found me giving my doctor a hug when he appeared around the corner and entered the room where my husband and I were waiting. I hadn’t seen him since August, which really hadn’t been that long ago, compared to the prior year and a half. I think I stood to hug him out of sheer gratitude and thanksgiving to ‘have him back’.
After a quick catch-up on how things had been going in that last month, he began by doing a regular PD exam, videotaping it as an ‘off’ exam (no medication that morning)… Stretch out your arms and tap your index finger to your thumb. Repeat on the other side. Close your eyes and touch your nose with your right hand. Now repeat with the left.Cross your arms like Jeanie (of the I Dream of Jeanie show) and try to stand up from out of your chair. Walk down the hallway a few times – back and forth, back and forth. Did I mention I’m being videotaped at this time? It is not for an entry for America’s Funniest Home Videos, but to record the difference between my ‘on’ times and my ‘off’ times. Maybe it would be a good entry for the show anyhow, especially with the quirky grin on my face because I feel like a two-year old performing a drunk driving test on the side of the road.
‘Off’ times are when symptoms from having PD can be extremely obvious and you’re ready for the next dose or an adjustment in your overall completed medication therapy. At this point in the exam, I was in a deliberate ‘off’ state. My doctor asked that I come in unmedicated. When the ‘off’ exam was complete, I took my medications and repeated the exact same exam, being videotaped once again in order to show the difference between being in an ‘on’ state as compared to an ‘off’ state and to also observe how I respond to the drugs I currently take.
In the ‘off’ state, my tremors are obvious–dyskinesia settles into my left leg, my neck and shoulders are extremely stiff, my joints are rigid, movements are harder and slower, and I can be in a lot of pain. The days vary, but that is the norm. In the exam, along with the above, my balance was poor, my walk slightly shuffled, my right arm didn’t swing, and well, if you have PD or have been around someone with it, you get the idea.
After the exam, I went back into my doctor’s office (he had done the taping in a different area) and I took my PD medications. About twenty minutes later, I could feel my medicine kick in and take effect. Meanwhile, I followed my doctor over to another exam room where he injected Botox into my neck, shoulders, and back to relieve the dystonic stiffness which is what causes the pain in my upper body and is to blame for many of the headaches I deal with. When he finished the injections, we returned to the other room where my husband was waiting. We discussed the DBS procedure and why my doctor feels I was at a good spot in my journey with PD to have it done.
Being conservative has always been one of my doctor’s virtues. When he’s added another drug to my daily regimen, for example, it’s one at a time in order to identify how it is being tolerated. Having DBS surgery is handled the same way—conservatively. Though some have commented that my condition seems slight when compared to Michael J. Fox, Muhammad Ali, or others they (and I) may know with PD, my doctor has told me he believes I have come to the crossroads of treatment. He explains that the medications he will administer will still continue to treat the symptoms but not as well. He also explains that my medications will now begin to greatly increase the progression of other and worse side effects. He said that we’re still going to be heading down the same road—the road of my PD progressing—but we’re going to try to avoid the pot holes along the way by staying in front of the progression and not behind it.
DBS would, to some degree, manage the tremors and dystonia. While it doesn’t cure the disease, it will make it easier to cope with for another few years or more to come.
We met with the neurosurgeon next, and he also confirmed Dr. Santiago’s opinion of doing the DBS. He felt the surgery was warranted and discussed the options of having it.
My doctor had told me he wanted to do the surgery on the left side of my brain first and then later down the road have the right side done. The neurosurgeon suggested implanting both wires at once so the procedure wouldn’t have to be repeated later and only one battery pack/pulse regulator would have to be installed, operating both sides together. The other difference was the surgical time involved. If they were to do two separate procedures, they would both be approximately four to five hours in length. If they did them both at once, it would add about an hour to the first surgery, but they wouldn’t have to repeat it later. When he asked my opinion regarding the surgeries, I told him that it sounded practical to do both at once, but that I trusted my doctor explicitly and I’d go with whatever he felt was best.
While we spoke with the neurosurgeon, he informed us that he had done over 200 DBS surgeries/procedures. He went on to say that the only complications had been two infections. One infection occurred in a patient four years after the procedure had been done, which meant they had to take the first implants out and repeat the procedure once again. He believed that the second infection was caused by the patient having a habit of scratching the top of his head where the incisions had been and the holes where the screws had been placed to hold the head still during surgery.
Note to self… no scratching.
My appointments had been completed and the next morning we headed back home to await the phone call for the surgery date.
~ ~ ~
January 3, 2011
After a 20 hour drive, we pulled in to Phoenix in time for my MRI. We thought, since we were about an hour early we’d check in first, but as we waited for the help desk in the hotel, we glanced at the clock and realized we were operating on Pacific time and my MRI was right now, 2:45 p.m., Mountain time. We shifted gears and went straight to the MRI, leaving the hotel clerk with a strange look on his face.
A contrast MRI was done. Approximately 10-20 milliliters of dye is administered for this type of MRI, which is done in specific circumstances and for the ability to enhance MRI scan images. This took about an hour and ten minutes. After that was over, it was back to the hotel and later that evening, to pick my daughter up at the airport. At 12:30 p.m., my husband returned to the airport to pick up my mom.
Four o’clock the next morning came early and after a shower, we were out the door and headed to the hospital. Check in was at 5 a.m. and after filling out paperwork, we were ushered into pre-op, where you are given the infamous see-all hospital gown. More blood work and an EKG, followed by a review of my medical history and a question as to whether I’d like a flu shot right then, was followed by the ‘appearance’ of my doctor. My daughter and I were talking when the curtain was yanked back and with his hands on his hips, legs spread shoulder length apart, he reminded me of Superman as he stood there, smiling. The only thing he needed now was to trade in his sterile white doctor’s coat for a blue cape and red tights (or is it a red cape and blue tights? I was more into Batman.). As soon as my daughter saw him, she exclaimed, “Dr. Tony!” and agreed that he did indeed, have Superman’s stance, if nothing else.
I have to say at this point, I hadn’t played the what-if game but once. I have had the utmost peace that I cannot explain except to say that I knew it was the right thing at the right time with the right team, with God overseeing the entire thing. However, the ‘what if’ questions did present themselves eventually, about four days before I was to leave from home to go to Arizona. They occurred after talking to someone about the surgery and listening to all of their concerns and their questions of whether I had thought about this or thought about that. When I got off the phone, I began questioning everything. After an outburst to Ken of, “What if I never see Boo again?” (Boo is my 2 year old (at the time) granddaughter), I immediately laughed at myself. What if I never saw Boo again? That would mean I’ve gone onto a much better place. And if God should choose to allow all things to go well, I would see her again. Either way, I told myself, it was a win-win situation and after a hug from my husband, I went back to whatever it was I was doing before the what-if’s tried to steal away my peace. From that point on my prayer was that God would be with me and hold onto me throughout the procedure as He guided the team through the surgery.
Back at the hospital…
At this point, my doctor had gone out of the pre-op area to get my husband (Ken), who had switched places with my mom so that she was able to see me before the surgery. He explained to my husband that he had taken the neurosurgeon (who would be doing the actual surgery itself), to a conference of a group of neurologists, in order to present my case for teaching on the most current techniques.
When Dr. Santiago finished going through with Ken what to expect, he returned, assuring me he would be with me throughout the procedure, never being more than a foot or two away. I met the anesthesiologist and nurse who would be attending me while in surgery. I was soon asleep and on my way into the surgery room from which I would return a ‘new’ person.
I was brought in and out of sleep during the process, as is customary for this procedure. The first time I recall waking up was to verify for the doctors whether the head frame was comfortable or not. My neurosurgeon told me to be certain in regards to the comfort level, as my head would be stationary in this position for the next four-plus hours (it ended up being nearly seven). After overhearing an amusing, “Can you hand me that wrench again,” and then a yank and another crank, the head frame was readjusted to fit more comfortably, then back to sleep they put me.
The next time I awoke I remember hearing, “I think we’re going to have to cut some more of her hair.” And then immediately following: “Yeah, we’ll have to cut some more hair.” Then the hair cutting device (which sounded more like a Dremel sander than any hair cutter I have ever heard), started up and again – I fell back to sleep.
The next few wake ups were for asking questions as to what I could see and/or feel, my doctor moving my elbows and knees, etc. This was done to identify where the doctors were in reference to placing the lead wire (I think). Apparently, unknown to me at the time, there were several people in the room. I knew it was busy at one point when I woke up, because I remember three to four groups made up of two or more medical staff, standing around talking as if at a well-orchestrated social function. My doctor later said that at one point there were 17 people in the surgical room. This is not necessarily common except to say that my doctor is also teaching/mentoring other doctors (fellows, as they call them) to do what he does. I remember listening to my doctor guiding the surgeon as to where to place the wire in my brain and without even looking at the screen, he instructed “a millimeter down” and “a millimeter to the right” and I remember thinking, I’ve got the smartest doctor in the world.
The battery back/regulator was also inserted during surgery, so there was also somewhat vertical incision done near my left shoulder where they inserted and placed the stimulator.
One more thing I want to share before moving on is that I have read accounts of other PD’ers experiences with their DBS surgeries and/or care. I have read where they felt they are receiving the greatest care they could ever have while others feel they are ignored and their doctor thinks they are imagining everything. All I want to say is – there are doctors who are the exception – who go above and beyond. And they are out there and available. You just have to keep looking until you find him or her.
~ ~ ~
The next thing I knew, I was in the recovery room, waiting to go to ICU. However, when the neurosurgeon came by to check on me, he said I was doing so well that I could go right into a regular room. (Right into a regular room happened six hours later.)
The pain was not what I expected – in a good way. I had two holes in my forehead, a row of stitches on the top of my head where there was now a 2½ inch incision and two other holes stitched up in the back of my head where the screws held my head in the head frame.
When I awoke in the recovery room, I was awake for most of the rest of the day and felt pretty good. Yes, there was some pain, but as I said before, less than what I expected. My head hurt, but then there was a good reason for that.
Back in the surgical waiting room, Ken and the clan were told I had just been taken into recovery and they wouldn’t be able to see me for an hour or so, so they left to get something to eat.
My recovery nurse, Little Jo, was funny and friendly and I was thankful since I was in recovery for so long, not because I had to be, but because they were short on beds. I kept myself entertained by listening to other patients as they came in and out of the anesthesia, their nurses trying to wake them up. There was Dude (named changed to protect the innocent), who entered the area groaning at a rather loud level, sounding like he was in much pain. He was wheeled by my bed, which had the curtain pulled across (except for about a foot and a half that was open).. The picture that passed before me was everyone’s greatest fear when donning a hospital gown. Poor Dude. Made me wonder if I was wheeled in exposed to the world. Those are questions better left unasked as you (being the patient) may not want to know the answer.
Dude did wake up after about a half hour of groaning and when he did, the nurse promptly asked how much pain he was in. I was sure he’d pick the crying ‘smiley’ face on the visual pain scale board. But no – Dude wasn’t in any pain.
“What?!” his nurse exclaimed. “You aren’t in any pain?” No, Dude just liked groaning.
Dude’s wife did come in to see him, eventually, and stayed just a short while as she had to hurry home to feed the babies. The babies, Little Joe and I later found out, were the dogs.
Then there was… let’s just call him Mulder (name changed once again to protect the innocent). He was having a lengthy stay in recovery as well as I, but he had a theory as to why it was taking so long to get into his regular room and shared this intellectual information with his nurse, inadvertently sharing it with all of those in recovery (he was rather ‘loud’).
“I know why my room’s taking so long to get,” he began.
His nurse, having already listened to much gibberish by Mulder, unenthusiastically asked, “How’s that?”
“Some homeless person shot someone at gun point and now he’s hiding in my room so no one can find him.”
Little Jo and I looked at each other; eyebrows raised, and never said a word.
When Ken and Tamara returned, Dr Ponce, one of my neurosurgeons, came by to see how I was doing. He was telling Ken that normally it takes 4-6 times of trying to place the wire lead in position, but with the new software/equipment that Dr. Santiago had presented, it allowed them to place the lead wire with precision, the very first time. He was extremely excited at how it had gone. Meanwhile, Dr. Smith, the other neurosurgeon, had spoken to Ken in regards to how things had gone and his comments were, “It went very well. Everyone was excited about the new procedure and it had gone really, really well.” I didn’t see Dr. Santiago until the next morning.
Eventually, after having something to eat, a room became available but I had to wait a few more minutes because ‘there was something stuck in the toilet in the room’. Upon removal of the ‘something stuck in the toilet’, they called Little Jo and she gave me the good news. I had a room.
The following morning I awoke at 4:30 a.m. and watched the most beautiful sunrise I think I have ever seen. Right from my hospital bed. God is in the little things…
At 6:30, Dr. Ponce came to check in on me and said I would be ready to be released by 11 a.m. He had me perform a couple little tests – raise my eyebrows, stick out my tongue, follow his fingers. Two hours later, Dr. Santiago repeated the test, while asking what time I had gotten to my room, as he said he had tried to check in on me before he had gone home the night prior but couldn’t find me. He asked me what the hardest part of the surgery was and I joked with him and said “Looking in the mirror afterward.” My hair was sticking up all over the place in the back and plastered down flat in the front. He said he’d never thought he’d hear something so vain coming from me. He knew I was kidding. My bad hair day was a small price to pay for a ‘new brain’.
~ ~ ~
The next weekend we repeated the trek south to have my stimulator programmed and my stitches removed. I couldn’t decide which I was looking forward to more – having my stitches removed so my head would finally stop itching or having the unit turned on.
We arrived in Phoenix Monday evening and made sure our clocks/watches were set forward so as not to repeat our mistake last time we visited. We didn’t set the alarm so we could sleep in, as we had left at 5 a.m. that morning and it had been a twelve hour drive that day and we were tired. (Okay, Ken was more tired, as I have a habit of napping in the car.)
The phone rang at 7:10 a.m. I answered it and it was Dr. Santiago’s assistant, asking if we could come in at 9 or 9:30 instead of 11.
“Did I wake you up?” Liz asked apologetically.
“It’s okay,” I assured her.
“Dr. Santiago thinks because he’s up early the rest of the world is up with him,” she laughed. I laughed, remembering several 7 a.m. appointments in Washington. I said sure to the appointment change and hung up, showered and dressed. We stopped for coffee and decided to get to the doctor’s office earlier, in case it helped my doctor out with whatever it was that had come up and he now needed to leave early.
We arrived at his office at 8:15 to find out he had wanted to bump it up to have more time programming the unit and we were taken into a patient room almost immediately.
We walked in the room and his doctor bag was sitting on the table. Shortly after, he walked in. After exchanging greetings, it was business as usual and on to the all-familiar PD test (walk the halls, jump, check balance, touch your nose and chin, tap your fingers, tap your feet. You know – I think I could write a catchy tune using that test and the toddler ‘Head and Shoulders, Knees and Toes’ tune!).
Dr. Santiago has said that the PD test is tracked on a scale of 1, meaning no symptoms, to 108, meaning the worst. When he did the first test that morning, I tested at 38. At this point, he had me take my meds, as I hadn’t yet done so.
I told him I still had a lot of swelling and numbness, but he assured me that was normal. He said DBS can be likened to having had a concussion and experiencing like symptoms. Okay, so I was normal – at least in that respect.
It was finally time to turn on my DBS unit. There were four ‘contacts’ he would program. As he began, he explained that he was going to stimulate the deepest contact that controlled my head and mouth area. As he turned the controller on, it made my mouth pull down on the right side, making it difficult to speak. He then turned it off and explained that what he was going to do was to test each contact from the minimum signal that could be felt to the maximum signal that could be tolerated. This would give him the range that he could work with for each of the contacts.
After this process was completed, he then began to activate the contacts together, trying to precisely pinpoint the best combination of contacts and voltage to alleviate some of my symptoms. I experienced tingling and numbness and while it was a strange sensation, it was not uncomfortable.
At this point, my doctor reminded me that my personal high PD test score has been 49. Now having the unit on and my meds having kicked in, he repeated the infamous PD test. I didn’t feel as clumsy walking and we walked around the entire center, stopping so he could show me his new office, where he showed me a picture of his beautiful wife. I turned around to see a large white board on the wall and it was covered with mathematical equations all over it. I just stood there and stared at it.
“That’s where I do my thinking,” he said. That kind of thinking would give me a headache. Good thing he’s the doctor.
We returned to the exam room where he made some more notes and then gave me my new score. This time was a 6.
A six? A SIX!!!
He then adjusted my medication for the next several months, going to four times daily dosages to three times daily and reducing two medications per day. This is the first step until I returned to have additional programming and further reductions in medications.
Once a day my unit beeps to remind me to check the battery and so far, I am still plugged in and all is working well.
When all the adjustments were made and we were all done, he walked us over to the other side of the center where his assistant was working.
“Oh my goodness! You look great!” Liz repeated over again about three times. I was glad I had brushed my hair that morning. “I can’t believe how good you look.”
Wow – was I starting to feel good! We made the next appointment for April and it was time to say good-bye.
Later in the day, I had my stitches removed by Dr. Smith. “You could be the poster child for DBS,” he said. “You look great.”
Well, stitches out, unit on, looking great – I great. I think it wasn’t until the next day I really noticed the difference. Yes, I had noticed the diminishing tremors and I felt much more relaxed – not so stiff and tight. But the next morning, I stepped onto the floor and there was no pain in my feet! Before the surgery, when I walked first thing in the morning, I shuffled to the restroom – in pain. After the surgery – I had no pain. This continued throughout the day as we rode long hours, once again in the car. Usually when we do this, I open the door and wince when I step down because of the pain. Not this day.
I also noticed how much easier it was to get out of the car, which was a very nice added benefit. And, like I said, I felt so much more relaxed and loose. My tremors remained lessened. I could hold my arms out straight in front of me and they didn’t wiggle around. I could open and close my hands easily. All around – I still feel much better.
On the way down to Phoenix for my surgery, I was re-reading about DBS. One of the things that made such an impression on me was thinking about all the other patients that have gone before me and been volunteers for this method and various different trials so that procedures like this one can be perfected. They have sacrificed much, I am certain, so that I could partake in something that is becoming more and more perfected worldwide. And so, at the very least, I feel I owe those people my thanks and gratitude for what they have done so that I could benefit from this thing called Deep Brain Stimulation.
I also continue to be in awe at the mere genius of my doctor. He has to be one of the most intelligent people I have ever known. I have wondered if I was dreaming when I was in surgery in regards to him guiding the surgeons as to where to place the wire without looking at the computer or the MRI of my brain while directing them. But, he told me no – I hadn’t been dreaming. He said it’s because he knows my brain so well, after having treated me for so many years and after studying my MRI so long. He knew exactly, to the precise millimeter where the wire was to go. And it did. I continue to be amazed at the genius of his ability and others like him, including my neurosurgeons and the rest of the team.
This is intricate, specialized stuff that goes on in the operating room and I am thankful – so very thankful – to have had the team that God put together for my brain.
If you are considering DBS at all – I would encourage you, after making sure you have been medically well managed up to this point, to start the process rolling. I mention being well managed, as DBS does not/will not necessarily benefit someone whose medication therapy has not been managed well. DBS is an extension of well-managed drug treatment, not a replacement.