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DBS Part 2 – Getting Plugged In

Posted Jan 29 2011 5:27pm

Dr. Santiago poses for a picture for Boo with 'Black Doggy'

The next weekend we repeated the trek south to have my regulator programmed and my stitches removed.  I couldn’t decide which I was looking 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 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 ‘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.

Dr. Santiago and the DBS programming unit

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.

Dr. Santiago programming the DBS unit - I think I'm distracting him

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.  J   But, I did have a question about another comment…

The morning after my surgery and sometime after 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 died it.”

“And it’s longer, right?”

“Yes, it’s longer.”

“She’s a very pretty girl.”

“Yeah, she is a pretty girl.”

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

“Yeah, my mom was in there, too.”

“She was really pretty, too.”

Good hair day vs. a bad hair day... smile

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?  J  Just kiddin’.  Don’t worry Dr. ‘Tony’ – you’re still Superman to us.


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 about 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 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.

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.  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  or any other surgery 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.

Please feel free to ask any questions!

Journeying with you,

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