DBS Update: SIX Years Later

It has now been SIX years since I joined the DBS "Holes in My Head Club" for Parkinson's disease and I bet you are curious as to how am I doing?

There isn't much change from last year. My DBS device settings are exactly the same as they were last year (1.30 left, 1.90 right) and my generator battery level is 2.76V which is lower than I expected, but still a long way from the 2.59V replacement (ERI) warning. 

I have reduced my intake of carbi/levodopa to one half of a 25/100 pill per day. Yes! You read that correctly, I have LOWERED the amount of Parkie meds I take daily. 

My sense of humor is still there and I try to find things to laugh about every day. My slowness of movement and rigidity are well controlled. I have almost no visible tremor, except first thing in the morning. 

I am happy that I have had such amazing results from my DBS experience and am thankful to Medtronic for making this therapy a reality. 


If you want more details, scroll up to read last year's update: DBS Year Five.

YumaBev's DBS Generator Battery is Dying

I knew my Medtronic Activa-PC DBS generator battery would need to be replaced some day. The average lifespan is 3 to 5 years. Mine was six years old in October 2018. 

At the beginning of 2016, my battery level was 2.97v. At the beginning of 2017, my battery level was at 2.91v. At the beginning of 2018 it was 2.85v. It was averaging a drop of .06v a year, so I figured I'd have several more years until it reached the ERI (Elective Replacement Indicated) warning you get when it drops to 2.59v, I was wrong.

I had been in the habit of checking my battery level using my patient programmer about every three months. April was 2.83v and July was 2.81v, right on target. So you can imagine my surprise when I checked it at the end of October 2018 and saw that it was down to 2.76v.  

I started checking it monthly, then weekly and now daily and I wasn't liking what I was seeing. The amount of time between voltage drops was decreasing. 

As of today, January 21, 2019, it's now at 2.69v. That's a drop of .07v in less than three months. If the voltage drop continues to accelerate, I will get the ERI warning in a few months!!!

My neurosurgeon, Dr. Norton is in the same office as Dr. Bradley, my Movement Disorder Specialist and I have an appointment with her in mid-March. I have already contacted Norton's assistant because I didn't want to wait until March and then find out that he's going to be on vacation or something else that would make him unavailable. Norton's assistant said they could get me on his surgery schedule within two weeks, but I should call if I get the ERI warning before my March appointment. 

Looks like this Happy Parkie will soon be getting a brand new generator. 

The generator won't stop working when the ERI warning appears. There's a built in cushion of time, it doesn't stop working until it gets to 2.20v. You don't want it to suddenly stop working so remember to check yours regularly.

YumaBev and the DBS Video

After almost two years of editing, the 'Lights, Camera, Action' video my Wonderful Husband and I did about Medtronic DBS therapy for Parkinson's disease is finally available to be viewed. 

Click to play:

I had watched some of the other Patient Stories online and was expecting mine to be 1 or 2 minutes long. I wondered which parts of the hours and hours of filming they would use. A lot of what they filmed that day was a blur.

I remember talking about my DBS experience and how they kept having to stop because the landscapers were making too much noise outside. 

I remember laughing and being silly and talking about my Parkinson's Humor blog.

I remember circling around and around the hotel trying to get a good shot of me driving my bright yellow Chevy Sonic. 

But most of all, I remember being able to share my story in my own words, just like I do in my blogs.

I was expecting a 90-second video, instead they made an eight minute movie that tells the love story of me and my Wonderful Husband. Enjoy it. 

You can also find the video by searching YumaBev's Medtronic DBS Story on YouTube.


I'd love to hear your thoughts about it. Email me at yumabev@gmail.com

My DBS Battery, by the Numbers

Back in the days before Parkinson's took center stage, I was a numbers person. I spent 99% of my working life counting cash, balancing accounts, making budgets and creating charts. 

Even to this day, I keep lists and make charts, though they tend to mostly be health related. Sighs.

So, when my DBS was a few years old, I started keeping track of the battery life. Here is my list:

2.97  1-1-16
2.93  6-8-16

2.91  1-1-17

2.85  1-1-18
2.83  4-1-18
2.82  5-4-18
2.81  7-1-18
2.80  8-1-18       31 days
2.79  8-20-18     19 days
2.78  9-16-18     27 days
2.77  10-9-18     23 days
2.76  10-26-18   17 days
2.75  11-11-18   16 days
2.74  11-19-18    8 days
2.73  12-9-18    20 days 
2.72  12-16-18    7 days
2.71  12-28-18  12 days

2.70  1-8-19    11 days
2.69  1-17-19   9 days
2.68  1-26-19   9 days
2.67  2-3-19     8 days
2.66  2-10-19   7 days
2.65  2-18-19   8 days
2.64  2-25-19   7 days
2.63  3-5-19     8 days
2.62  3-15-19  10 days
2.61  3-24-19   9 days
ERI   3-30-19
2.60  4-1-19     8 days
2.59  4-11-19  10 days
2.58  4-27-19  16 days
2.57  5-30-19  33 days

Towards the end of 2018, the decline began to accelerate, then it seemed to level off. Since I got the ERI (Elective Replacement Indicated) warning, the decline has slowed. I have been told by a Medtronic rep, that this isn't unusual.

I check it daily, and will schedule replacement sometime soon.

Rechargeable or Not? Trying to Decide

When I had my DBS surgery in October 2012, I had a choice of either a regular Activa PC generator (the thing in my chest that controls the leads in my brain) that would last from 3-5 years or I could choose the rechargeable Activa RC with a 9-year lifespan, but it would require me to charge it up on a daily/weekly basis. 

Rechargeable on left, regular on right

I knew lots of people who had the regular one and most were getting it replaced every 2-3 years. I only knew one person with the rechargeable and she said the charging equipment was sort of bulky. Dr Norton, my neurosurgeon recommended the regular one. He said you will get the newest technology with each replacement. So, I took his advice.  

Well, here it is SIX and a half years later and I will soon be facing this decision again. If I were to have replacement surgery today, I'd be getting the same technology that was available back then. As of today, there's nothing new for the patient from Medtronic, except the 9-year rechargeable lifespan has been increased to 15-years. I am told, however, that a new charging system, a new patient programmer and even a new regular generator will be coming to market soon. How soon? Your guess is as good as mine.

Can I wait? Maybe. 

While I wait and check my current battery status (2.57v) on a daily basis, I keep weighing the pros and cons of my choices.

The advantage of a regular unit like mine is you just forget about it for about 3 years and then you get a new one. Mine is over 6.5 years old, so mine lasted way longer than the average. There's no guarantee the next one will last that long.

The disadvantage, for someone as thin as I am, is that it really sticks out. 

This is my DBS IPG 

I am not a very vain person and just the fact that it shows doesn't bother me. What bothers me is that one top corner. 

IPG is sticking out 

Do you see how the skin is really tight in that one area? I worry that it may break through my skin one day. 

Close up of that corner

I must be very careful when buying shirts, there can't be any seams in that spot. The same thing goes for bras, the straps can't rub across that area. I have to carry my purse on my left shoulder or across my body from left to right. I have to be careful when I am in the right passenger side of autos because the seat belt goes right across that spot. 

If I want to give someone a hug, I have to watch out for glasses or cell phones in shirt pockets, purses hanging on their shoulders, sometimes even bulky jewelry can cause me pain. I even have to be careful about the position I sleep in. Sometimes I feel some discomfort in that spot when I am stretching my arms. I have to always be aware of it. 

I have held both choices in my hands, I have taken comparison photos. The rechargeable is definitely smaller and more importantly for me, thinner.

It's definitely thinner

And of course, now I know more people who now have the rechargeable unit. Some charge it daily, some twice a week, some less than that. Most agree the charging apparatus is bulky, especially if you travel often by air, which I don't. Most charge theirs when they are laid back in a recliner watching TV. It apparently just sits on top of the unit in their chest. This could be a potential problem for me because I prefer to sit up straight. I can't sit in a recliner, I find them very uncomfortable. 

The other advantage of the rechargeable is the now 15-year lifespan. This means less replacement surgeries and any time a Parkie can avoid surgery, it's always a good thing.

To further complicate things, I could also replace my Medtronic device with one from Boston Scientific or Abbott, but I have ruled this choice out. I have a good relationship with Medtronic and am happy with the way my device works. Switching might cause problems. 

I still have some time to decide, but I am leaning towards the thinner rechargeable. Maybe one of the new devices will be ready soon. I will let you know.


  

June 13th, 2019, DBS IPG Surgery Day

I could have waited to schedule my Parkinson's DBS Medtronic IPG replacement surgery. My battery was still at 2.57V and it might be months before it dropped to 2.20V and stopped working. Then again, it might drop really fast. It's the unpredictability that bothered me. 

Plus, I was getting tired of putting off any kind of travel or vacation plans and tired of checking my voltage level daily. So, I got ahold of Dr. Norton's assistant and asked if anything was available mid-June. She said how about Thursday, June 13th at Noon? June 13th?? Well, at least it wasn't Friday the 13th. I said okay. 

We'd driven over the day before and were soundly sleeping in our hotel room when my phone rings. I groggily answered hello.

"Hi, this is Stephanie, have you left yet?"

What? I mumbled.

"This is Stephanie, from Tucson Medical Center, have you left Yuma yet?"

What?? Huh?

Slower and more clearly "This is Stephanie, from Tucson Medical Center, Dr. Norton is sick, he's canceling all of todays surgeries. Have you already left Yuma to come to Tucson? He wanted me to catch you before you drove all the way over here. That's why I'm calling you so early. Have you left Yuma yet?"

Dr. Norton sick!? Now, I'm wide awake. Hi Stephanie, we are already in Tucson, at the hotel just down the street from the hospital. We came yesterday. What's wrong with Dr. Norton, is he okay?

"You are already here? Can I call you back in a few minutes?" 

Sure, no problem.

Phone rings five minutes later. "Hi Bev, I just talked to Dr. Norton, since you are already here and it's just a battery change, he's going to go ahead and do your surgery. He cancelled the others. He came down with a bad cold yesterday evening. He said he'd double mask, so you won't get sick. Can you be at the hospital by 9, he'll do you at 10?"

Sure, I said, by the way Stephanie, what time is it?

"5:45am she said."

We arrive at the Tucson Medical Center at 8:30am. We go up to the outpatient surgery floor, I get checked in and pay my co-pay. The hospital wants their money before surgery. I no sooner get done and my name is being called, so we head back to pre-op.

Nurse Esther gives me the designer one-size-fits-absolutely-no-one gown and says take off everything and put it in the bag, EVERYTHING. She pulls the privacy curtain and I comply.

YumaBev ready for surgery

Joey the Medtronic Rep comes in. He checks my current settings and will make sure the new IPG is set the exact same way. He says he'll see me in the OR (operating room) and leaves.


Dr. Norton pokes his head around the curtain. He's wearing multiple surgical masks and gives Hubby a fist bump and me a thumbs up. I ask how he's feeling. He says the cold came on quickly, but he took some Nyquil last night and is feeling well enough to do my battery change but cancelled the brain drill and generator placement surgeries scheduled prior to me. I thanked him. He said it's okay, I can't see you having to drive all the way over here again. He marked an X on my right shoulder (hospital rules, he mumbled) and listened to my heart and lungs. 

I asked him if I can have the old IPG that they are removing? He said he'd ask, but he didn't see why not, after all, you paid for it. 


A few minutes later, a man comes in. "I'm Dr. Offerdahl, your anesthesiologist." 

I tell him about my adhesive allergies and ask him to get the EKG pads off me as soon as possible. I also tell him that I want to be as wide awake as possible so I can blog about it. He says how about I give you just a bit of Propofol when Norton is doing the painful numbing shots? Then I will wake you right up again. I say okay. I kiss Wonderful Hubby goodbye and Nurse Esther takes him out to the waiting area. 

YumaBev ready to go

We get to the OR, they slide me over on the surgical table, tuck my arms in, give me a warm blanket and an oxygen mask.

As Dr. Norton is doing his thing, he tells the OR nurse to figure out how to get me the IPG he removes. He's telling them about my blog and how I kept the drill bit he used on me during my DBS brain surgery six years ago. I say "I wish we could Live Stream this on Facebook. I want to see what you are doing." 

YumaBev's actual surgical site

I ask Dr. Norton if he ever plans to retire? (he's 79) His reply:

"No, I will just keel over during surgery.
Dr. Offerdahl will try to revive me.
He will be unsuccessful.
My estate will then sue him.
And he will end up living in his car."

Dr. Offerdahl says, "I'm not doing surgeries with you anymore."

I'm laughing so hard that it's difficult to stay still. 

I can feel the sensation of Dr. Norton suturing me. There's no pain at all. He says he's done and going to find my hubby. I ask Joey to take a picture of Dr. Norton and me. Two other male voices chime in and say "We want to be in the picture, too!"

(L-R) OR nurse Chris, YumaBev, Dr Offerdahl, Dr Norton

And we were done. They slid me back on the gurney, wheeled me to recovery. Wonderful Hubby came in. A nurse went over the post-op care sheet with us. Another person said I should call pathology later because they have the IPG in their possession.

Joey came in to make sure my new device was working properly. A nurse helped me get dressed. They wheeled me down to the car and Hubby drove us back to the hotel. It wasn't even Noon. 

We eat lunch and then I call the hospital and ask for the Pathology department and ask how I go about getting my old IPG. 

"Let me check. May I have your phone number?"

An hour later, my phone rings. My 'specimen' is ready to be picked up. We go get it. 

Yes, this is the actual IPG that has been inside me since October 25, 2012. It's been a long day. I'm tired, but in no pain. 

The Morning After, Size Does Matter

Last night, I had taken the gauze bandage off before I put my pajamas on. I was supposed to wait 24-hours but the paper-tape was irritating my skin.  

I wasn't in any pain, and I'm sure the numbing agent had worn off by now but I took a Tylenol tablet before bed, just in case.

I slept well and spent most of the night on my left side, with a pillow between my right arm and my side. I did wake up once and I was sleeping on my right side and the pillow was down by my feet. I have no idea how it got there. I only felt a little discomfort when I got out of bed in the night to go pee. 

In the morning, I decided to take a look and see what the incision looked like. It doesn't look too bad. Most of the redness is from the paper-tape that held the gauze bandage in place. My skin really hates sticky stuff.

YumaBev's incision, morning after surgery

Wonderful Hubby had already got his shower at the hotel and he suggested I wait until we got home because the water pressure was really strong and the tub floor was kind of slippery. Since my incision looked okay and I wasn't in any pain, we decided to head for Yuma. 

Sitting in the passenger side of the car with the seatbelt rubbing across the incision would be painful, so I drove. We got lucky, all the traffic was going in the opposite direction. We stopped once for a bathroom break and a second time to have a snack and we got back to Yuma just in time for lunch.  

So, which did I choose? Regular or Rechargeable??

Yes, size does matter. I went with the smaller, thinner rechargeable IPG from Medtronic. 

Comparing the sample IPGs

It's hard to tell how big the regular one is, so I took pictures of my old IPG with a standard deck of playing cards. 

It's big! Especially if you are thin like me. I can already see the difference, and I won't need it replaced for at least FIFTEEN years! The surgery was a lot less painful than I expected. 

PS I called to check on Dr. Norton. He's fine and doing extra surgeries this week to get caught up. That man is AMAZING!

Post Surgery Follow Up

It's been eight days since my Parkinson's DBS battery replacement surgery, and I have a follow-up appointment in Tucson. We overslept, so we quickly got ready and left Yuma at 7:15am. We had an easy drive with very little traffic. 

I usually take my half a carbi/levodopa tablet AFTER I have my cereal with milk, but today, because we slept late, I took it on an empty stomach and I was now having noticeable dyskinesias in both feet. 

When I checked in, I was told I had no co-pay. That was a pleasant surprise. 

The Center had an Alzheimer's Awareness Month display with purple balloons, purple ribbons and purple frosted cupcakes. Another surprise.

We hadn't had any breakfast and we were hungry, so Wonderful Hubby and I each grabbed a cupcake. I ended up with purple frosting on my hands and face. No surprise there.

I was in the restroom trying to wash it off, when I heard Dr. Norton call my name. Yes, he comes out to the waiting area to get his own patients!

I hurried out and Wonderful and I walked back to his exam room with Dr. Norton. 

"Did you get your device?" Dr. Norton asked.

Device? I'm thinking to myself, what is he talking about? Then it dawned on me, he was asking about my old IPG. Yes, I said, I got it that same day.

"I see you are having some dyskinesias" Dr. Norton said.

"I told you he'd notice" Wonderful said.

As I sat in the exam room, I asked Dr. Norton if all his DBS surgeries are as humorous as mine. 

"Only yours" Dr. Norton says, chuckling, "only yours." 

Wonderful says,"I was stuck out there in the waiting area worrying, and you guys are having fun, it's not fair."

Before Dr Norton removes suture

Dr. Norton snips the knot off one end of the suture and grabs the other end with tweezers and gives a gentle pull. It comes right out. He holds up the 3-inch long piece of blue suture and says, "looks like fishing line, doesn't it?"

He grabs his Medtronic DBS programmer, checks everything and asks me if I want him to lower the settings to calm my dyskinesias. 

After suture is out

I say, no, I'll be fine after I eat. 

I tell Dr. Norton to check out the blog stories, he says he will, and we are done. 

YumaBev & Dr. Thomas Norton

As we are walking out, he says "I'm here if you need me, if not, I will see you in 15 years." 

That's a deal, I say. 

On our way home, I manage to pull off the highway and snap a picture of a saguaro cactus that looks like it's waiting for a hug. A very nice surprise.

The Hugger Saguaro

We got back home at 6:15pm: a 475 mile, eleven-hour day for a 10-minute appointment. Was it worth it? YES. No surprises there. 

Clicking on the colored words will open a new window and take you to a different story or website.

Things That Need To Be Charged

It's been four weeks since I had my Medtronic DBS for Parkinson's disease IPG (battery) replaced with a rechargeable version. The incision is completely healed and all the bruising is gone. Dr. Norton cut right along the previous incision so there's still only one little scar. In my opinion, it looks better than before. 

New rechargeable IPG

It certainly doesn't protrude as much as the previous non-rechargeable unit, and that is a good thing.

Old IPG

What else is different? Not much, except now I have become just like all of my electronic devices: I have to be charged regularly. 

The screen on my Patient programmer looks different. Instead of a screen showing the battery life in Voltage, it shows a percentage of how much charge I have left.

I have 75% charge left

I keep all our chargers in one spot. I keep my DBS Patient programmer there too.

Cell phone & tablet chargers & patient programmer

Now I just added the DBS charging system. It is kind of bulky. 

DBS charging system on the left

Medtronic provided me with a carrying bag. It might work okay, if you take out all the manuals and extra items you won't ever use, but it's bulky.

Medtronic DBS carrying bag

So, I did what I do best! I went thrift store shopping and found a cute little soft-sided bag with a zipper top for less than a dollar. 

YumaBev's cute little 'Charger' bag

Everything fits with room to spare and since it's see-through, you can easily to find whichever charger you need.

Plus the new little bag with everything in it only weighs a little more than the empty Medtronic one.

I'm all charged up and ready to go, just like the Energizer Bunny! 

Charging This Parky

Since I opted for the Medtronic Activa™RC rechargeable IPG to control my Parkinson's disease symptoms, I have to charge it regularly. I've become just like a cell phone and no, I don't have a plug in my chest. Instead it works using the same type of technology that the wireless cell phone chargers use (something to do with magnets and coils.)

The charging system consists of three pieces:

The power cord

The transformer, which is one of those black boxes that always seem to be attached to anything with a battery, like laptops, karaoke machines, etc.

And the charger with antenna attached

The power cord connects to the transformer, which connects to the charger, which then charges the charger. Got it? 

Why do I have that children's song about Bones playing in my head? "The toe bone's connected to the heel bone, the heel bone's connected to the leg bone..." Sorry, it's my warped sense of humor.

When the charger is fully charged, it will stop charging, so it's okay to leave it plugged into the wall outlet when not using it. 

Before I left the hospital, Joey, the Medtronic rep, showed me how to place the charger's antenna over the IPG implanted in my chest and which buttons to use. The top green button starts the charging process. The middle black button with an X, stops the charging process. The bottom button with the speaker symbol on it, turns the sound on or off. The two buttons on the side don't get used with DBS. 

That's it! Green for GO, X for STOP. Simple!

Joey also gave me some adhesive disks that go on the antenna to help hold it in place on my shirt. If you use the stickies, the antenna should NOT be placed directly on your skin. I'm still using the first sticky! 

Placing the antenna properly takes a bit of practice in order to get the maximum number of 'bars'. Eight bars will charge faster than six, four or two. The screen refreshes every 60-seconds.

The antenna also has a dial which you can turn to get more bars. 

The charger will beep at you if the antenna moves and drops to zero bars. The charger will also beep when your IPG is fully charged.

Since my settings are very low (1.4/2.0) I could probably only recharge once a month. However, the more discharged the IPG is, the longer it will take to recharge it. I charge mine every Sunday. I figure it's an easy day for me to remember since I've already filled my weekly pill box on that day.

How long does it take? I'm not sure. I charge while I'm watching TV and haven't thought to pay much attention to the clock. If it beeps, I check to see if the antenna has moved, and usually the beep is the 'fully charged' beep.