Welcome to My Story about DBS

Below is the story of my journey through DBS surgery. Before you consider such surgery, you should:

1. Ask questions. 
How many has your neurosurgeon done? 
What is his/her infection rate? 
What is the success rate? 
Will they do just one side at a time or both sides at the same time? 
If they do one side at a time, who will make the medication adjustments and when will the second side be done? 
Will they shave your whole head or just a small area? How long will you stay in the hospital? 
How much will your insurance pay? 
Do you have co-pays or deductibles? 

2. How many visits will the ENTIRE process take? 
This question is especially important if the neurosurgeon and programmer are not nearby. In a 6 month period, I made 12 round trips of 500 miles, plus gas, wear & tear on my car, meals out and hotel rooms for each trip. 
A DOZEN visits in the first few months is a NORMAL amount of visits.
Insurance won't pay these costs and you will need someone to drive you, so you need to make sure you can afford these extra expenses and have the transportation necessary.

3. WHO will do the PROGRAMMING? 
How much experience do they have? 
Do they know how to "fix" problems caused by the DBS? 
How often will you see the programmer? 
How far away is the programmer (re-read #2)? 

4. DBS is ONLY for the motor symptoms (tremor, rigidity, slowness) of Parkinson's disease. IF you get any other positive effects, consider yourself lucky. DBS is not proven to help with the non-motor symptoms of Parkinson's (speech, balance, apathy, constipation, sleep disturbances, anxiety, sweating, loss of sense of smell, facial masking, etc.)

5. Chances are you will still need to take Parkinson's medications for those non-motor symptoms mentioned above as well as for the motor symptoms. If you think you will discontinue all Parkinson's medications, you will be disappointed. 

6. If you are expecting a quick fix, you will be disappointed. First your brain has to heal from the surgery (8 - 12 weeks), then the settings must be adjusted SLOWLY. Finding the right combination of settings and medications takes time. In my own case, it took OVER A YEAR to get my settings optimized. Notice I said optimized, not perfect. My settings and how much medication I take has been adjusted several times in years number two and three. I can't tell you the number of people who contact me and complain that their symptoms aren't gone when their generator has just been turned on. It takes time.

7. DBS will NOT slow down or stop the progression of the disease. DBS may not fix all your motor symptoms. You may still have some tremor, rigidity or slowness. If you are expecting all your motor symptoms to vanish, you will be disappointed.

8. DBS can be very beneficial, provided all goes well and you make sure to SEEK THE FOLLOW UP CARE necessary. DBS is surgery and all surgeries can cause complications. 

9. There are now THREE manufacturers of DBS devices available in the USA. When I had my surgery, there was only Medtronic. Since my surgery, Abbott/St. Jude and Boston Scientific have been approved. I would ask about all three before choosing. See if they are MRI compatible, if your Parkinson's doctor thinks one might be better than another. 

10. This is my story about my experience. Your experience may be different. Some places are now doing DBS while you are asleep. My target was the STN and done bilaterally. Some people have a different target in the brain. So, please, go ahead and read about my surgery and most of all, have a Happy Parkie Day!

DBS: What the Heck Is It?

DBS is not the abbreviation for Ditzy Blonde Singer. It stands for Deep Brain Stimulation and is a surgical option for relief of Parkinson's Disease (PD) motor symptoms. It won't cure the disease or stop the progression, but if done successfully, it can significantly lower the amount of prescription drugs taken and thereby get rid of aggravating side effects. DBS is good for relieving tremors, rigidity and slowness of movement (Bradykinesia). IF you get relief from any of the non-motor symptoms of PD, then it is a bonus.

Our brain is like a high tech computer and movement depends on the smooth flow of very complex signals along multiple paths. These paths are arranged in connecting loops, so the signals are always making round trips, reporting activity back to the brain. In people with Parkinson's, these paths have little bumps or cracks in them, so the signals don't flow smoothly and erratic movements such as tremor, rigidity and slowness happen.

Bumpy Parkie path

A doctor discovered that external electrical stimulation to a certain area of the brain stopped tremors and, in effect, neutralized the erratic signals caused by PD. This finding led to the current DBS procedure. 

Since each side of our body is controlled by the opposite side of our brain, DBS can be done on one side or both, depending on how PD affects you.

The procedure requires an electrode being surgically placed in the exact right spot in your brain. You are awake during this surgery (which would be unnerving to most, but not for me, I want to be wide awake), and completely off PD medications, so they can see if your hands stop shaking or if you can move on command. They also watch for unwanted things such as double vision or slurred speech. 

Then, in a separate procedure, about a week later, the generator (a battery powered device that sends the electrical signals) is placed in your chest or abdomen and connecting wires are run under your skin to the electrode in your brain. Medtronic manufactured my DBS device and I am very familiar with their Cardiac Pacemakers (a similar type product). When I worked in a Cardiac Cath Lab, I used to observe the placement of cardiac generators on a regular basis.

Once you have healed, the device is programmed. Programming may need multiple adjustments to get it optimized for you. 

It sounds scary, and it is, but when you are experiencing bad side effects or taking medications every few hours without much relief, it's worth considering.

My Favorite Martian

The electrodes do NOT protrude from your scalp, so you will not look like a Martian. It won't short out when you get wet and you cannot recharge your cell phone by placing it over the generator. (Yes, I have been asked these questions)

My DBS Story

The first time Dr. Zonis mentioned Deep Brain Stimulation (DBS) surgery to me was probably back in late 2007. He just mentioned it and then added, "Not now, of course." 

Over the years, he sometimes mentioned DBS but always followed by, "Down the road" or "Just think about it."  I never did think about it. Why should I? I was doing great; I was only taking Parkinson's medication three times a day, so why risk surgery? 

The first time we really discussed DBS was in 2011, after I had attended a local conference about Parkinson's Disease. I even went so far as to make an appointment with a Movement Disorder Specialist (a neurologist who specializes in diseases such as Parkinson's) in Phoenix, AZ which is over 3 hours away. He thought I'd be an excellent candidate, but I decided against the surgery.

It wasn't until mid 2012 that I really started considering the surgery and this blog details my journey.

PS Dr. Zonis is a general neurologist in Yuma, Arizona. He is the doctor who diagnosed my Parkinson's back in August of 2007 when I was 47.

My Executive Secretary

It is June of 2012 and I've lost my executive secretary. I don't know what happened to her. I think she disappeared several months ago, but I'm not sure. It took me a long time to even realize she was gone.

She was an excellent secretary. She could keep me up to date on the conversation going on in the Parkinson's Chat Room, proof-read my newest Parkinson's Humor blog story for typos, help me come up with words that rhymed for my songs, pay all the bills, keep my checkbook balanced, give me the proper answer to the question my Wonderful Husband just asked, remind me to take my pills and wash my cereal bowl, and she could do it all at the same time. She had been with me all my life. She was the one who got me those straight A's in school and the near perfect SAT scores. She took care of the serious stuff, so that I could have fun. She was a part of me.

YumaBev being silly

My cereal bowl was the first clue that something was wrong. When I would get it out of the cabinet in the morning, it wasn't where it should be. One day, my Wonderful Husband asked me about the Chat Room and I realized I hadn't been in there in weeks. The bills were still being paid, but they weren't being filed away. Her usually tidy desk was a mess. It was around this time that I realized she was gone.

I tried to figure out where she went, and why. I think she left because of the working conditions. I think she got tired of all the drugs that were flowing through her work station and just decided to sneak out one day. I wasn't sure what to do. I needed her. I was not handling her disappearance well. I decided to see if I could find her and convince her to return. 

I asked my neurologist if we could do anything about the drug problem. I was convinced it was the increase of a certain drug I was taking that caused her to leave. By my best guess, she left shortly after my dosing of this drug doubled. He suggested DBS, the Deep Brain Stimulation surgery. He said it should decrease the drug situation, but didn't know if my executive secretary would return. 

I wasn't sure I was ready for brain surgery, so he adjusted my medications instead. After a few weeks, I started to see a difference. The cereal bowl was back in it's place. (It turns out that I was leaving it on the counter and my Wonderful Husband was washing it and putting it away). The pile of paid bills was being filed. I found time to tackle a sewing project and found that I could chat at the same time. My executive secretary was back! She wasn't as good as she once was, but after all, what could I expect? She has Parkinson's, too, and all those drugs I take, go right across her desk.

She and I had a long talk one day and we decided to consider the DBS surgery. I am taking medicine every three hours from the time I wake up until the time I go to bed and she thinks that is excessive. We sat down and had a long discussion with my Wonderful Husband, we explained, as best we could, what had been going on. The idea of brain surgery scares the daylights out of him. I can't say I'm exactly thrilled about the prospect, but I want to keep my executive secretary happy. I need her. 

My Executive Secretary

PS Cognitive issues like I was experiencing can be a dis-qualifier for the DBS surgery and even though the change in medication helped me get my secretary back, my motor symptoms were getting much worse.

I'm in a Sticky Situation

Today, July 5, 2012, I have taken the first small step (or giant leap) and made an appointment for a consultation with a neurosurgeon. I hope he has a sense of humor because he'll need one.

I should be concerned about the usual things associated with brain surgery, such as having holes drilled in my head, but I am not (well, maybe just a little).

I am worried about the sticky stuff: the tape they'll stick across the IV line in my arm to hold it in place, the EKG pads they will stick fast to my chest to monitor my heart rate during surgery, and whatever
they will stick across the holes they've drilled in my head to protect me from infection. 

Why am I sweating the sticky stuff? I am allergic to sticky stuff. Put a band-aid on my arm and the skin reddens, blisters and then takes on the appearance of a severe burn. The same thing happens with those sticky pads for an EKG machine. My skin doesn't like sticky stuff.

This allergy has made for some interesting medical ingenuity over the years. One surgeon used a tube-top to hold bandages in place after a breast biopsy and even though the EKG pads were placed on my chest the very last thing before surgery, and taken off as soon as possible afterwards, I still had red welts on my chest weeks later. My dermatologist used my glasses to hold bandages in place after she removed skin cancers from my nose. I have even improvised myself. I cut the top off a sock to protect my arm when I burned it while ironing and found that a partial glove protects a cut finger.

Burned my arm ironing.

So, I am concerned as to how they are going to manage the sticky stuff during and after the surgery (if I decide to go through with it). Maybe they can use honey or jelly, they are sticky and I'm not allergic to either one, but then I might attract ants or bees (and I am allergic to both). It's definitely a sticky situation. 

PS My sticky situation started right about the same time as my Parkinson's symptoms. Prior to that, I had no problems with band-aids at all. Coincidence? Hmm

Deja Vu?

"The Doctor will want to see you in your OFF state, so don't take ANY Parkinson's Disease medications on the day of your appointment." Those words kept bouncing around in my head. Why? The neurosurgeon I was going to see, about DBS surgery, was over 200 miles away and I had no idea what condition I would be in when I got there. So, a few days prior to my appointment, I decided to experiment.

I normally wake up around 5 am and take my first two Parkie pills of the day, then I take one at 9 am, another one at Noon, etc., until I've taken the last of the nine pills and go to bed around 11 pm.

I'm awake at 4:40 am and since it's a few days before my doctors appointment, I decide to try a day OFF of medication. I take a deep breath and skip my first two Parkie pills. 

6 am: I feel okay, so I go walking with my neighbor. About half-way through our walk, my left foot cramps, badly, but I manage to hobble home.

7 am: I am still okay, but my stomach is growling , gurgling and doing flip-flops. This is not normal, so I eat breakfast (two hours earlier than usual).

8 am: Still okay, left foot cramping, but my stomach is not happy, so I eat some toast. 

9 am: I am still able to move, albeit slower. My left foot continues to cramp. My stomach is still growling, so I try some chocolate chip cookies. 

10 am: I am very jittery and moving much slower, but I am still able to walk. I'm hungry and eat more cookies. This OFF thing will make me fat if I'm not careful! 

11 am: I can still move. Good! This is when my appointment time will be, in a few days, and I'm not stiff as a board or shaking like the paint mixer at the home improvement store.

12 pm: I can still move, but I am very rigid. My left foot continues to cramp. My stomach is still gurgling and growling.  The tremors have started and I manage to eat lunch, but more peas end up on the floor than in my mouth. 

1 pm: My entire body feels tense, like all my muscles are contracted. The tremors have worsened and my left foot keeps cramping, but I can still walk. I eat a couple more chocolate chip cookies, but it's not helping. 

2 pm: Since I was told that I would be able to take my medications as soon as the doctor was done with me, I go ahead and stop the experiment. I take my first two Parkie pills and eat a few more cookies. Relief should come soon.

3 pm: No relief, I still feel the same, maybe slightly worse. I know this feeling, it's deja vu, this is how I felt in the days before I got diagnosed. I try to lie down, but cannot get comfortable, so I get up and eat a few more cookies. 

4 pm: Some relief, finally. I celebrate with a few more cookies.

6 pm: I am back to my normal drug routine. I still feel a bit off; headache, stiff neck, groggy and my stomach is still wonky.

11 pm: I am exhausted but finally feeling more normal.

Conclusion: I should be able to make the drive to the doctor off meds, but it's going to be a rough day. 

Note to self: pack lots of things to snack on and a bunch of cookies, lots of cookies. 

To Drill or Not to Drill: That is the DBS Question

You know the saying, "I need    (fill in the blank)    about as much as I need another hole in my head"? Well, it looks like I don't need another hole in my head, I need two!

We left at 6 am for the 200 mile trip to Tucson, Arizona on Monday, July 30, 2012. I skipped my Parkinson's Disease (PD) medications as directed and even though it was an easy drive, I felt much worse than I did on my experimental OFF day. It was all I could do to get out of the car. I was very slow and rigid. The t-shirt I wore was accurate. Hey, it was a serious trip, but I needed to keep my sense of humor.

We arrived early and as my Wonderful Husband signed me in, Dr. Thomas Norton was calling my name. We followed him to an exam room and sat down. He asked me about my symptoms, medications and how long ago my PD started. He spoke softly as he explained the DBS procedure. DBS consists of electrodes inserted in your brain and a generator (the controller) implanted in your chest with wires running under your skin between them. I watched his hands carefully, they weren't shaking (a good sign in a neurosurgeon).

He has done well over 600 of these operations with a very high success rate. In other words, patients had reduced PD symptoms, needed less medication and therefore had less side effects (All the things I was hoping for). He checked my ability to move against opposing forces and my reflexes. He had me stand, then got behind me and pulled me backwards. I caught myself and maintained balance, another good sign.

He thought I would be an excellent candidate for the surgery and recommended inserting electrodes in both sides of my brain, but using a single generator. Since I am so thin, they may have to place the generator in my abdomen instead of under my collar bone (I guess I don't eat enough chocolate chip cookies). He didn't think I would develop any speech or balance problems, since I didn't have any now. Maybe all those years as a loud-mouthed tumbling cheerleader are paying off.

1973

I told him about my adhesive allergy and he said they'd figure something out. I asked about my hair and he said they just shave off a small section where they insert the electrodes and I could wash the rest of my hair the next day. So, it looks like I won't have to wear a Dolly Parton wig, but I may have to learn how to do the Donald Trump comb-over!

He liked my t-shirt, so I told him about my Parkinson's Humor blog and since I had brought some magnets with the Parkinson's Humor web address on them, I gave him several. I asked if my Wonderful Husband could take a picture of us. He said yes and asked if I would be putting it in my blog. I said, "Yes, I write about everything." (I'm not sure he realizes his picture will be seen world-wide)

Yuma Bev and Dr. Norton

He took us over to Olga, who does his scheduling. Olga explained the next steps and what kind of time frame we were looking at. I said, "Set it up." It will be several weeks before the pre-tests are done and likely several months before the surgery gets scheduled, so I have time to grow out my bangs for the comb-over. 

Since my appointment was over, I took my PD pills. It was noon. I shuffled out to the car and we headed for home. We stopped for lunch at Panda Express and the saying in my fortune cookie made me burst out laughing. 

The ride home was uncomfortable. I felt much worse than my trial run. It must be from sitting for so many hours. I usually walk around and seldom sit for more than 30 minutes at a time. 

By 9 pm, I was exhausted, so I took my last PD pills of the day and went to bed. It took a few days before I was back to my normal self.

I will keep you posted on the next steps and hope to have the surgery done before the end of this year. I can't imagine what it will feel like to possibly be ON all day without the horrid side effects. I can't see myself being any happier than I am now, but who knows, maybe I'll be able to enter America's Got Talent. Yeah, right. (I can hear the buzzer already)

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Studying for My Psych Test

I am planning on having the DBS surgery and to qualify, because of my previous cognitive problems, I need to have what is known as neuropsychological testing. This is a big medical word that simply translated means: Is she alright in the head? 

They will check for signs of depression, dementia, cognitive and memory problems. Having any of these isn't necessarily a surgical no-no, but they might follow you more closely afterwards.

Some of my Parkie friends, who have had such tests, gave me advice. They warned me about lists and lists and lists, plus math problems and putting pegs in holes, so I figured I better study before I went.

I'm not worried about the depression part, I'll just show them my blog or sing one of my songs and pass that test.

I didn't have any pegs or holes to practice with, so I used a seven day pill container and a bowl of M&M's. The idea was to put the various colors in the separate sections as fast as I could, but I had a problem, I kept eating them (red is my favorite). 

The math problems shouldn't give me trouble, I was somewhat of a math genius in school and even wrote a computer program to do my homework. However, if they do those "Bob got on bus # 7 at State Street and there were 5 people on the bus, 4 got off at Main Street, 3 got on at Harley Street and 2 got on at Grover Street" and then ask, "What was the name of the guy who got on at State Street?" I will be sunk. I am terrible with names, always have been, always will be. Why do you think I always say Wonderful Husband in these stories? 

I was told they will say lists of words and ask you to repeat them back and the lists will get longer and longer. I can usually remember what is on my grocery list, until I get to the grocery store, then I promptly forget until I am back home. One person said they asked her to name as many items as she could that would be found in a grocery store and started with the letter B. So, I said, "Beer, beer, beer and beer." which is funny since I don't even like beer. The letter C is on my usual grocery list: Cereal, cereal, cheese, cereal, cookies, candy, cereal, croutons, cereal, carrots, cereal, canned veggies, cereal, chicken, cereal, chips, cereal. I eat a lot of cereal.

Well, I guess I have studied enough. I will let you know if I passed or not. 

Psyching Out the Neuro-Psychologist

The day of my Neuropsychology exam started at 4 am, since we had to drive 200+ miles to Tucson, Arizona for my appointment on August 31, 2012. We could have gone the day before and stayed in a hotel, but I figured I'd sleep better in my own bed and since I'm usually up by 4:30 or 5, it wouldn't make much difference. I was wrong; I didn't sleep well at all.

The drive over was fairly easy, there's not much between here and Tucson except cactus and jackrabbits, and the rabbits were all sleeping. I did see some interesting signs on the way. The first one read, "Solar is the Answer," then there was, "Christ is the Answer" and finally, "Jesus is the Answer." Right then, I knew I had three possible answers to whatever questions the tester might ask.

We arrived a few minutes early and soon Karin (the Neuropsychologist) called both of us back to her office. The first part of the exam was an interview. I answered all of her questions and my Wonderful Husband bragged to her about my Parkinson's advocacy, my Parkinson's Humor blog, my book and how I'd done a TV interview the afternoon before. I wore my "What's Shaking? Just Me!" t-shirt just for fun and Karin noticed it, so I was pretty sure I passed the "no signs of depression" part of the test. 

My Wonderful Husband was sent out to the lobby and the real testing began. She told me she was going to say three words and I was to repeat them back to her and try to remember them because she would ask me to say them again later. When she said the three words, which I won't repeat here, I smiled because I immediately thought of my good Parkie buddy Jim and his wife Penny.

After the three words, we did all kinds of memory tests. I drew my renditions of geometric shapes she'd shown me. I repeated numbers, forwards and backwards. I answered questions and tried to repeat back stories. I did well with the numbers in the stories, but not so well with the names, which didn't surprise me one bit. I warned her I was good with numbers and terrible with names. I did math problems and connect-the-dot games. 

shape drawings

Then it came time for the dexterity tests, the dreaded pegs-in-holes. I did terrible with my right hand and not much better with my left. No surprise with this outcome, I actually did better than I thought I would. Sometimes, I can't even pick up a fork right-handed, much less a tooth-pick sized peg.

We took a break for lunch, then two more hours of testing and we were done. She said I had an amazing memory and she didn't see any reason why I couldn't proceed with the DBS surgery. She asked me not to detail every single test, verbatim, in this story. I promised I would not and we left.

My Wonderful Husband and I headed back to Yuma, 219 miles away. All the way home, and most of the evening, I kept trying to remember the three words on a list of fifteen that I missed. Karin kept repeating these fifteen words over and over and I would say them back and only come up with twelve. It was driving me crazy.

When I walked with my neighbor the next morning, I was telling her about the tests and how I kept missing three words. She asked me to say all the words to her, so I did. When I was done, she laughed. She said, "You just named off sixteen words, not twelve." Karin was saying sixteen words, not fifteen, and I was repeating ALL of them, not twelve. Apparently, I can't count and talk at the same time. Gee, I hope Karin doesn't read this and change my score.

By the way, I didn't get to use Solar, Christ or Jesus as answers to any of the questions Karin asked.

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Why DBS?

I am a week away from DBS surgery. I have had a lot of people contact me and ask why, specifically, I am considering such a step now. To most, it seems like an extreme measure; a last resort, but it actually is a quality of life decision.

Even though I was only diagnosed with Parkinson's five years ago, I have had the disease for at least sixteen years. I had excellent results from medication when I first started taking it. The change in my physical condition after just five pills was miraculous and I wish I had before and after video to show you. 

I got by on just three doses a day for almost four years, but then the disease progressed again. With Parkinson's; you develop symptoms then stay at that level for awhile; develop more symptoms and stay at that level for awhile; develop worse symptoms and stay at that level for awhile, etc. I am now in my sixth "get worse" period and my "stay at the same level" times are decreasing. A year ago, I was doing well on three doses; a few months ago, I was doing okay on six doses. Now, I am not doing well at all. (Every person with Parkinson's progresses differently.)

If a picture is worth a thousand words, then this video should explain why I am having DBS. This video is eight minutes long and shows a typical day for me. I repeat the same routine (typical things done daily) over and over again, every hour or so. Rigidity and slowness (bradykinesia) are difficult to capture, but I think I've done a pretty good job. Have a look:

This is also available on YouTube at:
YumaBev before DBS video

If the surgery goes well, I expect to have an increase of six hours of ON time a day and hopefully eliminate some side effects (foot cramps) at the same time, which would definitely improve my quality of life. 

How Does One Prepare for Brain Surgery?

My copy of Robyn's book

My friend Robyn was diagnosed with Parkinson's disease at age 43, then eight months later with breast cancer. She wrote a book called Most of Me in which she details her medical meltdown using bawdy humor. She had less than three weeks to prepare for a mastectomy, so I found it quite funny when she asked me, "How does one prepare for DBS?"

Favorite legal tee shirt

Obviously, since I am having brain surgery, I should "put my affairs in order." Years ago, I made my Last Will and Testament (I leave all my blah, blah, blah), Durable Power of Attorney (in the event I can't blah, blah, blah) and Advance Health Directive (I only eat vegetables, I don't want to be one, blah, blah, blah), so I can spend my last days before surgery doing really important things like dinner and a show with friends, ice cream with my Wonderful Husband's car club, going on a photo walk with the Yuma Camera Club and having dinner and tons of laughs with my neighbors. In other words, having fun.

I only have a few days left before my surgery, so I am writing some extra blog stories, in case I don't feel like it while recuperating. I'm also designing a Halloween costume with antennae and thinking up lyrics for a new song "I've got Two Holes in My Head." I'm trying to figure out how to sneak my camera and laptop into surgery so I can take pictures and post updates to Facebook and Twitter during the procedure. Yes, I will be awake. 

I can't decide what to wear to the hospital. No, I am not a diva; I just need to pick something I can get into and out of easily, since I will be off medications that morning and barely able to move. Two people from Medtronic (they make the DBS device) are coming to my surgery to meet me and a researcher doing a study funded by the Michael J. Fox Foundation may be coming as well. It's a good thing I don't care what I look like, because I am sure I won't be at my best. I mean, what WOULD look good with a stereotactic frame bolted to my head? Hot pink lipstick? 

stereotactic frame

My Wonderful Husband's birthday is just days after my surgery and I think the best birthday present I could give him is to still be a Happy Parkie afterwards. Wish me luck.

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Checklist for the Morning of my DBS Surgery

My DBS surgery is tomorrow morning, October 18, 2012, so I have put together a checklist so I don't forget anything in the morning.

1. Shower and wash hair (so it's clean if they shave it off), brush teeth, skip deodorant and skin lotion as directed in instructions, wrangle stiff limbs into clothing

2. Wake up Wonderful Husband (I bet he didn't sleep much either) 

3. Double check contents of Aware In Care kit and take it with me, including huge "I am allergic to adhesives sign"

4. Put "Who to call list" in Wonderful Husband's shirt pocket along with cell phone

5. Make sure I have picture ID (like an impostor would want to take my place??) and Insurance Card

6. Make sure Wonderful Husband has a jacket (it will be freezing in waiting area), a magazine to read and some hard candy to snack on

7. Take allowed medications with a sip of water

8. Drive carefully to hospital, this is not a good time to get in an accident

9. I am not sure, but I think the "Don't shave for at least two days prior to surgery" instruction was a mistake, at least in my case

Darn! I forgot to pack my HOT PINK LIPSTICK!

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Parkinson's DBS Surgery Day

Warning: This story will contain graphic descriptions and pictures from my Parkinson's DBS surgery, but it will also be humorous, so if you are likely to faint or pass out, read it while lying in bed! You have been warned.

October 18, 2012:

Modeling gown

My day began at 4 am; I did not sleep well, but not due to nervousness, it was because the air conditioner in my hotel room wasn't working properly. I washed my hair as instructed, woke up my Wonderful Husband and drove to the hospital, a few blocks away. I got admitted, tagged with an arm band, directed to a pre-op room and given a designer Bair Paws surgical gown to wear. It was now 5:45 am.

Various nurses came in and out; checking vital signs, asking questions, etc. I was handed a urine sample cup and told they needed to do a pregnancy test. I said, "You've got to be kidding!" They weren't. I had been off all Parkinson's medications for twelve plus hours and had nothing to eat or drink, but I managed to get a few drops in the cup (shaky hands). 

Good news! I am not pregnant! Whoo hoo! Yippee! Hooray! 

I wandered around the room, peaked out the window and watched the sunrise, pushed all the buttons and flipped all the switches on the walls, just to see what they did. Soon they wheeled in the "frame"; most of it was in a box but I took a picture of what wasn't. 

Stereotactic frame

Then Dr. Robin Kloth, the anesthesiologist came in. She was tall, thin and had brightly colored shoes on. I told her she needed to meet my Yuma Camera Club buddy Charles. He always wears colorful sneakers. She said, "Surgical scrubs are green, and I wear them every day, so I can only add color to my feet." She explained about the procedure and we discussed my adhesive allergy. I told her I wanted to be as wide awake as possible. Dr.Robin Kloth got me on the gurney and started an Intravenous line (IV).

Some of Charles' sneakers

Dr Norton and YumaBev

Then Dr. Norton and Stephanie came in. Stephanie is a neuro-stimulator programmer who assists Dr. Norton with the surgery. It was "put the frame on" time, so my Wonderful Husband (he hates medical stuff) was sent down to a waiting area. They numbed me up a bit and attached the frame. The worst part was the alignment pins they had to put in each ear while they tightened the frame in place. I thought my left ear was going to fall off, but it didn't. During this part, I asked Dr. Norton "Has anyone ever freaked out at this point?" His reply was, "Yes, one patient, who happened to be a doctor, went berserk, so we had to terminate him." Then realizing how that sounded, he quickly added, "Terminate the procedure, not the patient!" I think we all burst out laughing at that point. As you can see in the pictures, I am still smiling. It was now 8 am. 

YumaBev Still smiling

Then it was off for a CT scan, which took about 20 minutes.  They wheeled me past my Wonderful Husband for one last hand squeeze and I love you. I remember saying, "I'd give you a kiss, but this frame's in the way." My Hubby looked scared, but I wasn't. We were having too much fun.

Next stop was the Operating Room. In there, I met Bill and Adam from Medtronic, the company that makes the device. They made a special trip just to meet the funny lady who laughs at Parkinson's. Introductions were made, some jokes were told and it was time to start. The person doing a research project for the Michael J Fox Foundation did not show up. It was now 9:15 am.

Because I am nosy, I asked for everything to be explained as it was going on and complained that they should have set up mirrors for me so I could watch. I said that I wished I could take pictures, so Stephanie asked Dr. Norton if she could take some for me, and he said yes. I think, at this point, they all realized I am completely crazy. 

YumaBev giving the two thumbs up sign

They did my left side first; they soaked the area with antiseptic solution and shaved off part of my hair. I didn't feel the drilling, just some buzzing, Dr. Robin Kloth (anesthesiologist) probably gave me extra juice. Then they placed the lead in my brain and it was time for testing. Your brain makes electrical noise and as they tested, it sounded like eggs frying. All I kept thinking about was those old anti-drug commercials: Here is your brain and the here is your brain on drugs.

The electro activity sounded just like eggs frying

They had me do open/close hands tests and thumb/finger touches; they checked my limbs for rigidity and they had me repeat back "It's a sunny day in Yuma Arizona." Then I could feel him suturing me closed, the sutures were squeaking and he kept saying "her scalp is so thin." I think he had some one pinch the area together because I felt my left eyebrow raise (free face lift). None of this was painful; I could just feel the sensation, like at the dentist.

YumaBev laughing and smiling during surgery

Then it was time for the right side. Someone asked me if I was scared and I truthfully answered, "I am more nervous in the dentist chair getting my teeth cleaned." This time I could feel them drilling and my teeth rattled. I joked that either that side of my head was hard or they needed a new drill bit. Then it was testing time again, only this time, they added a tongue twister for me to repeat back: Eleven enormous elephants elegantly eating Easter eggs. I think I repeated it back perfectly. 

The actual drill bit from my surgery

Before the procedure, I told Dr. Norton that I did not want to hear the following things during surgery: oops, oh crap, what is THAT, code blue or call my attorney. During the right side, something went clang, clang and clang. I said, "That didn't sound good." Dr. Norton calmly replied, "Bev says she doesn't want to hear oops or oh crap during surgery, so will someone please pick up the large forceps that fell." Again, everyone laughed. I am sure he had four or five more sterile ones on the tray, so I knew he wouldn't use it on me again. I remember Dr. Norton asking someone to help pinch my scalp together so he could suture it close and felt my right eyebrow lift.

Near the end of the procedure I smelled a really strong chemical smell. I was afraid it was another olfactory hallucination and told them about it. They laughed and said, "No, we all smell it, too. We are cleaning up for the next surgery."

We were done and all they had to do was take the frame off. All went well until they got to the back left side, where it attaches to the table, I think. The bolt or screw was caught in my hair and they had an awful time getting it loose. Getting this screw untangled from my hair was the most painful part of the whole procedure. Dr. Norton posed for one last picture and then went to find my Wonderful Husband and tell him all went fine. It was 11:03 am and we were done.

Dr Norton and YumaBev, all done and both smiling

The new holes in my head are 14 mm wide, about the size of a dime. There are caps in the holes, and the leads are attached to these caps. The leads will be connected to the stimulator in another surgery which will be done next week. The caps are held in place by two tiny screws. So, the next time someone says to me, "Have you got a screw loose?" I can answer, "Gee, I hope not. I'd hate to have it rattling around in there!"

My DBS was placed in the Subthalamic nucleus (STN) part of my brain. Clicking on the colored words will open a new window and take you to a different story or link

Parkinson's DBS Surgery, Part 2

Warning: This story has a few graphic photos, so if medical stuff bothers you, consider yourself warned.

My Wonderful Husband has two phobias: Medical things of any kind and loose tangled wires. So, when he walked into my Intensive Observation room after my Parkinson's DBS surgery, it was his worst nightmare. There I was, with strawberry blonde hair and tubes and wires running everywhere, all of them a giant tangled mess.

YumaBev and all her tangled wires

An hour after surgery, I wanted out of the bed. Moving all the medical apparatus connected to me wasn't easy, but nurse Sondra managed and I was able to sit in a chair. I felt pretty good, I was hungry, and I needed my Parkie meds, which I had brought with me. My head hurt, a little, but my lower back hurt worse and my hair was a tangled matted mess.

Sitting up and talking on phone

The nurse brought me some jello and crackers and I took my own Parkie meds. Then my Wonderful Husband decided to see if he could do anything with my hair. He slowly pulled the matted sections apart, then got a wash cloth and wiped as much of the red (a combination of blood and iodine) out as he could. 

Trying to wash the blood out of my hair

I sat for awhile, then asked nurse Sondra if I could walk. She said yes, and found a way to put all the medical stuff on two different poles so I could walk up and down the hall. Now I know how a dog feels on a leash.

YumaBev still smiling

They brought me a very practical dinner for someone with Parkinson's who has just had two holes drilled in her head. Spicy pulled pork, baked beans and mixed veggies. I ate most of it with my fingers and still dropped about half. 

Nurse David came on duty at 7 pm and my Wonderful Husband went back to the hotel about 8 pm. If I could stay up until 11 pm, they would be able to remove one of the things connected to me, so I stayed up. David moved some things from one arm to the other, so I only had two things connected to my left arm and I tried to go to sleep. They had the bed elevated and I couldn't turn on my side, so I didn't get much sleep. I was wide awake a 4 am and talked David into letting me get back in the chair.

Nurse Thuy, my Wonderful Husband and breakfast all showed up around 7 am. The only thing I ate was peach yogurt, the rest was stuff I don't like even when I feel great. Dr. Norton came by around 8 am and said I was doing good and he'd be back later to see if I was well enough to go home. I laid down, got up, walked up and down the halls. I was ready to go home. 

Nurse Thuy said that Dr. Norton wanted to see if I could keep lunch down (Vomiting is not good after brain surgery) and would be back after lunch. Lunch came around 11 am; spinach lasagna. I ate most of it; even though it looked and tasted awful. Stephanie (Dr. Norton's surgical assistant) came by an hour later and said I could go home, so I got dressed and we headed back to Yuma, Arizona, 220 miles away. It was Friday, October 19, 2012. 

Close up of top of my head

I kept dozing off on the way home, which is not a good thing, since I get sick if I close my eyes while riding in a car. By the time we got home, I was tired and feeling sick to my stomach. I ended up throwing up all the spinach lasagna. Then I got a shower and washed all the red out of my hair and went to bed around 8 pm. I woke up the next morning with a swollen right eye (to be expected) and no more nausea.  

YumaBev with swollen eye, but still smiling

Sometimes you get what is called a honeymoon effect just from the trauma of the surgery and I did. I had almost no Parkinson's symptoms on Saturday or Sunday, but they did return, six days later. Here is a little video clip of me just 48 hours after the surgery.

You can also view this on YouTube:
48 hours after DBS

To continue reading the rest of this story, look below this one, on the right side of the page and click on OLDER POSTS.