Parkinson's DBS Surgery: Part 3, the Generator Implant

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

I couldn't sleep, so I got up at 2 am. My Wonderful Husband didn't sleep well, either. We left for Tucson (220 miles away) at 6 am, and arrived at the hospital at 10 am. It was exactly a week since they drilled holes in my head and today they would implant the generator in my chest and run wires under my skin and connect them to the leads in my brain. I would be asleep for this procedure, so I don't know how they do this, and I'm not sure I even want to know.

At 10:30 am, I was sitting in the pre-op area, waiting for the nurse. At noon, I was in the operating room waiting area talking to Bill and Adam from Medtronic (they make the device). The last thing I remember is me saying, "Do you want me to move over to that gurney or are you going to move me?" and this answer, "Dr. Norton likes us to move his patients." That was it. I don't remember anything after that. 

Checking Facebook & Twitter

Next thing I remember is waking up in recovery with my Wonderful Husband standing next to me. It was 3:30 pm. My chest hurt, my throat hurt and it felt like someone was pulling on my right ear. The nurse came in with a wash cloth and wiped off my neck and behind my ear. Soon I was getting dressed and being wheeled out to our car. I was wobbly to say the least.

YumaBev right after surgery

We went to the Holiday Inn Express and got checked in. I was still feeling wobbly, so my Wonderful Husband got me to the room first and then went and got our luggage. I hurt; not as bad as when I had a wisdom tooth extracted or when I got Montezuma's revenge after a trip to Mexico, but I hurt, mostly behind my right ear. The doctor had warned me that Tylenol wouldn't be enough for this, so I had filled the prescription for Vicodin ahead of time. There was a restaurant nearby, so Wonderful Hubby went and got us some food and I took the first pain pill. Within an hour, I was feeling much better, except for some nausea. 

I managed to stay awake long enough to take another pain pill and then we both went to sleep. I slept on my left side and placed an extra pillow between my right arm and my chest. I got up once in the night and took another pain pill and then fought nausea for an hour or so. I woke up about 7 am and took my usual morning Parkinson's medications. We went down to the hotel lobby for breakfast and afterwards, I took another pain pill. The nausea returned, so I laid down for a while and then, when I felt better, we headed back home to Yuma. The Holiday Inn Express was clean, quiet and the bed was comfortable, I will definitely stay there again.

I did okay on the drive home, but we stopped several times for me to walk around and get some fresh air. I ate a sandwich when we got home and went back to sleep. The nausea from the pain pills was worse than the pain, so I went back to Tylenol. I slept a lot that day, but felt well enough on Saturday, two days after surgery, to go to a Halloween Party at the Yuma Camera Club. I went as Dolly Parton.

YumaBev as Dolly Parton

Overall, the surgery wasn't too bad. The nurses forgot to take a couple EKG pads off me and my skin is still red where they were stuck to me, but it didn't blister.

Marks left from EKG pads.

I have a bulge under my skin where the generator is implanted, but it won't be noticeable under clothing. I'll probably have a scar, but I didn't plan to enter any bathing suit contests. 

They shaved a little more of my hair off, but the rest covers it pretty well. 

A few more stitches

Now comes the hardest part of this whole procedure; waiting for the unit to be turned on (next week) and programmed (two weeks later). It looks like I will have to be a patient patient. 

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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, 220 miles away. 

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, and they are just starting to return today, six days later. Here is a little video clip of me just 48 hours after the surgery.

You can find all my videos on my YouTube channel:

https://www.youtube.com/user/ParkinsonsHumor

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.

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. 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: Round and round the rugged rock the rascally rabbit ran. 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.

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!"

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Checklist for the Morning of my DBS Surgery

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 good book to read (Dutch Island) 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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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 is 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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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:

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. 

You can find all my videos on my YouTube channel:

https://www.youtube.com/user/ParkinsonsHumor

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A Moonwalking Parkie

I remember watching, in the summer of 1969, the first moonwalk. We had a small black and white TV and the picture was grainy. You could just barely make out a bulky figure climbing down from the spacecraft and stepping on the moon. It was thrilling for this little nine-year old girl. I lived in Orlando, Florida back then and used to watch, from my front yard, the rockets blast off into space.

Fast forward to 1983 and I watched Michael Jackson moonwalk on the Motown 25 Special, this time on a color TV. Within a few weeks, I managed to do the tricky dance-step myself, but only if the flooring was slick and I was wearing the right shoes.

Fast forward to 2012 and I still moonwalk, but it's a very different moonwalk. I take my camera and try to catch the full moon as it sets. I was moon-walking at 5 am the other morning and snapped these pictures as the moon set. Not bad, considering I didn't have a tripod, or anything to rest the camera on and the fact that I have Parkinson's. 

The moon is almost touching the street

As I was shuffling back towards the house, I realized how much I walked like the astronaut from 1969, stiff and clumsy, like I was wearing a bulky spacesuit. Parkinson's has taken so much from me, but given plenty in return, such as this new kind of moon-walking.  Maybe I can't move like Michael Jackson once did, but I can still wear sparkly socks!

Things Not Known about Parkinson's

This is a Letter to the Editor that I wrote, it was published in the Yuma Sun newspaper in October of 2012. You have my permission to submit it, or your own revised version, to your local newspaper. Let's share the facts of Parkinson's disease with our communities.

This is addressed to all the physicians in my community. I have Parkinson's disease. Here are some things you might not know about Parkinson's:

1. Almost 35 percent of Parkinson's patients never get a tremor — that's right, no tremor. The rest may have action tremor and not resting tremor. The tremor may be on just one side of the body; Parkinson's doesn't have to be on both sides.

2. No one is too young to have Parkinson's disease. I know people who were diagnosed in their teens. It is not in our imagination, we are not faking symptoms, we aren't drinking too much coffee or just anxious. There is definitely something wrong. Help us.

3. Stiffness and slowness of movement are common symptoms. Changes in gait and lack of arm swing when walking are telltale signs. 

4. Parkinson's medicines can cause melanoma, so refer all your patients to a dermatologist for a complete skin check.

5. If a patient presents with upper back, shoulder or neck pain that you can't find a clinical reason for, it could be an early sign of Parkinson's disease. Don't dismiss it.

6. Parkinson's disease can affect our heart, and the medicines we take can affect our blood pressure. Your Parkinson's patient might just need their Parkinson's medications adjusted, not another prescription.

7. Changes in the ability to smell may be an early sign of Parkinson's.

8. Sleep changes, acting out dreams, vivid nightmares are all early signs of Parkinson's.

9. Changes in handwriting, letters becoming smaller and cramped are another early sign.

10. Changes in voice, slurring words and speaking softer are all signs.

11. Changes in facial expression or a blank look are signs.

12. Stooped posture or loss of balance is common.

13. Cognitive changes can be a side effect of the Parkinson's medications, so don't just assume otherwise and add another Rx.

14. Adding another medication to the tons we take isn't always the answer — it could be one of the medications we are already taking that is causing the problem.

15. Refer your patients to a movement disorder specialist preferably or at least a neurologist who knows about Parkinson's. Don't try to treat them yourself; Parkinson's is too complicated. I know, I have it.

Beverly Ribaudo

Do you smell that???

"Do you smell smoke?" "Do you smell gas?" "Do you smell (fill in the blank)?" I was like the Verizon cell phone commercial where the man keeps saying, "Can you hear me now?" I was driving my Wonderful Husband crazy.

I smelled things that weren't there and every non-existent smell was icky. I never smelled anything pleasant, like fresh baked cake or cookies. No roast turkey or pizza. Sometimes the smell would last for an hour; sometimes it disappeared in a minute or two. 

Yummy Cake

I was driving into town to do some shopping and all of a sudden I smelled the distinctive odor of burning wires. Was my car on fire or is it another fake smell? I didn't know, so I pulled into the nearest parking lot. I popped the hood and found nothing. I closed the hood, climbed back in the car and the smell was gone.

I was doing laundry and when I opened the dryer door, I smelled the "skunk" additive that they add to natural gas lines. "We have a gas leak," I yelled to my Wonderful Husband. He came running and said, "I don't smell anything." I took another sniff and the odor was gone.

While watching TV one night, I smelled bleach. We don't even have bleach in the house. I woke up one morning and my eyes were burning. I smelled raw onions. It smelled like someone was holding a whole bowl of cut onions right under my nose. While sitting at my computer desk, I smelled the awful burnt orange odor that was prevalent near the orange juice factories in Florida, but Florida was 2000 miles away. Most of the time, I knew the smells were fake, but with some, like gas leaks or smoke, I had to go and ask, "Do you smell that?" 

Raw onions

My sniffer had gone haywire. The technical term is Olfactory Hallucinations and I guessed that it was a side effect of a Parkinson's medication, but which one? I looked over my Charting Notes and saw a recent increase in one prescription. I asked my Neurologist if we could reduce that particular medication. We did and, for the most part, the "smells" disappeared. Oh, they pop up occasionally, usually in the morning, about an hour or so after I take the first dose of the offending prescription medicine. 

My latest icky smell: Wet dog!


Many people with Parkinson's have a diminished sense of smell. I am fortunate that my sniffer still works. It works too well sometimes. I can't go in to stores where scented candles or soaps are sold, the strong aromas overwhelm my senses and give me a headache. I try to purchase as much unscented home items as possible. Some people have olfactory hallucinations that aren't caused by medication, but by the Parkinson's itself. Every Parkie is different.

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