Wednesday, March 12, 2014

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, 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!

Tuesday, March 4, 2014

DBS: What the Heck Is It?

DBS is not the abbreviation for Ditsy 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)

Monday, March 3, 2014

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.

Sunday, March 2, 2014

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.

Saturday, March 1, 2014

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