My DBS Story

How did it go?  I'll tell you...

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.  Ken returned to the airport to pick up my mom at 12:30 p.m.

Four o’clock 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.  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.  As soon as Tamara saw him, she exclaimed, “Dr. Tony!”

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, and 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 that..  I got off the phone questioning everything.  After an outburst to Ken of, “What if I never see Boo again?” (Boo is my 2 year old granddaughter), I immediately laughed at myself.  What if I never saw Boo again?  That woule 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 Ken, I went back to whatever it was I was doing before the what-if’s tried to take away my peace. From that point on my prayer was that God would be with me and hold 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, who had switched places with my mom so that she was able to see me before the surgery.  He explained that he had taken the neurosurgeon who would be doing my DBS with him to a group of neurologists to present my case for input on the most current techniques.

Dr. Santiago finished going through what to expect, 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.  The first time I recall waking up was to check to see if the head frame was comfortable.  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 almost seven).  After overhearing a “Can you hand me that wrench again,” and a yank and another crank, the head frame was readjusted to fit more comfortably, then they put me back to sleep.

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 cutter (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 groups of 2-3 standing around talking and it seemed like there were 3 or 4 groups of 2-3.  My doctor said at one time there were 17 people in there.  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 (or something like that) 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 a vertical incision done near my left shoulder where the placement was done.

One more thing I want to share before moving on is that I have read other 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. I prayed that God would be with me throughout the surgery and hold me.  He did.  Through the hand on my doctor.  And He never let go.

~ ~ ~

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 still 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, not 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 pitch, sounding like he was in much pain.  He was wheeled by my bed, which had the curtain pulled, except for about a foot and a half.  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 (as a 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 his 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 jibberish 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 the 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. They were 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’.

~ ~ ~

Part 2 - DBS Programming -

This past weekend we repeated the trek south to have my regulator 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.  I answered it and it was Dr. Santiago’s assistant Liz, 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 is he needed to do that had come up.

We arrived at his office at 8:15 to find out he bumped 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 infamous 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 tube of '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.  The deepest contact controlled my head and mouth area, the second contact was for my neck and my arms and hands, the third contact was my lower body and the fourth was for my legs and feet (or something like that).

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, I might add, he has this white board with all this equation stuff written all over it. I just stood there and stared at it.

“That’s where I do my thinking,” he said.  That 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 return 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.

I must apologize for getting my doctor in trouble in reference to his comment on my bad hair day – the day after surgery.  I knew he was teasing.  I think.  (pretend there's a smiley face here)   But, I did have a question about another comment…

The morning after my surgery and sometime after kidding with his comment about me being vain, he asked about my daughter and my mom.  Tamara, my daughter, knows Dr. Tony (as she calls him).  She’s been with me to several appointments.  He’s never met my mom until the day before my surgery, when she kissed him on the cheek and with tears in her eyes thanked him for all he had done before I was to go to surgery.

The next morning the conversation went something like this…

“Was that your daughter at the hospital yesterday?”

“Yeah, that was Tamara.”

“Does she have reddish hair now?”

“Yeah, she dyed it.”

“And it’s longer, right?”

“Yes, it’s longer.”

“She’s a very pretty girl.”

“Yes, she is a pretty girl.”

“And that was your mom in the pre-op room?”

“Yes, my mom was in there, too.”

“She was really pretty, too.”

He switched to another topic and soon had to leave.

Didn’t he skip a generation in his compliments or was it because I really was having an extremely bad hair day?  Oh my goodness… is it true?  Could it be?  Am I really… vain?  (pretend there's another smiley face here)  Just kiddin’.  Don’t worry Dr. ‘Tony’ – you’re still Superman to me.

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!  It pays to be having  a good hair day!  (insert one more smiley face)

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 felt 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! When I walked first thing in the morning, 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.  Not since being plugged in.  Technically, I should say 'turned on', but that just doesn't sound right.

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 just feel so 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 things like Deep Brain Stimulation.

I also to continue to be in awe at the brain activity of my doctor.  He has got to be one of the most intelligent people I have ever known or met.  I have wondered if I was dreaming when I was in surgery in regards to him guiding the surgeons 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 it was to go.  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  or any other surgery does not/will not necessarily benefit someone whose medication therapy has not been managed well.  As my doctor says, DBS is an extension of well-managed drug treatment, not a replacement.

Have you had DBS?  What was your experience?  Would you recommend it to another PD'er?  Why?

Please feel free to ask any questions!

Journeying with you - Sherri

For more information, medically and personal experience on DBS - please go to parkinsonsjourney.com and type DBS into the search bar. It should bring up several more articles that might be useful (or not).

7 Replies

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  • Wow a wonderful read with so many details...thank u:))

  • Thanks for the great info. You should update your status every once in a while as you progress.

  • Did it take some time to get the programing right? What are your settings on left and right sides? Thank you for sharing. Tony x

  • Thank you for sharing so thoroughly! Please keep us up to date. :)

  • Thanks, well written tale of success.

  • Just had my dbs "cranked up" yesterday it sure does feel good. My procedure was done @ Wake Forest university Baptist Hospital in Winston Salem NC & it was equal to yours as far as the Dr.'s @ staff, especially Kim the surgical coordinator. I went in to the surgery all prayed up, & no doubt in my mind That God was in control. I'll keep saying it "GOD IS GOOD ALL THE TIME, ALL THE TIME GOD IS GOOD!

  • Lucky for us we have have a DBS center in our city( Buffalo). So if hubby is a candidate, we won't have to travel like you do. I'm glad you are doing so well. I know it had to be frightening despite your confidence in your story. Thanks for sharing.

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