Updated: Aug 15, 2018
I always thought of myself as a pretty smart old programmer (ha!) - so I was used to being open to new ideas and technology. As I mentioned in my first blog post, after I was diagnosed with Parkinson's (PD), I jumped right into researching my condition. But when I first read about Deep Brain Stimulation (DBS) , my immediate thought was, "No way, dude, NO ONE is messing around with the insides of my brain!"
Well.... times have changed, my friends! Not only have I decided that I want it done, but I've gone through all the preliminaries and have been approved for the procedure!
Disclaimer: Let me state right up front that I am not a physician, and what I am presenting is either 1. My personal own experiences, or 2. What I have heard or read regarding DBS. It is not meant to diagnose or treat any illness. See your own physician or neurologist before making any medical decisions
So what is DBS?
Before I give you my list of the things one should know before having DBS, you need to understand what DBS is. Deep brain stimulation is a surgery that involves implanting electrodes in a specific area of the brain. The electrodes are normally placed on both the left and right sides of the brain through small holes made at the top of the skull.
The electrodes are connected by long extension wires that are passed under the skin and down the neck to a pacemaker-like device (called a neurostimulator) placed under the skin in the upper chest. Similar to a heart pacemaker, the neurostimulator produces electrical impulses, passed through the extension wire into the electrodes, to regulate abnormal impulses caused by PD.
Fig 1 Courtesy of Medtronic
The neurostimulator itself is programmed by the neurologist using a small hand-held wireless device that is placed next to the neurostimulator. With this device the neurologist can set differing amounts of stimulation (electrical current) to either lead on each side of the brain. These stimulation settings can be adjusted as a patient's condition changes over time. The patient also gets a "slimmed down" unit so that they can turn off the device if needed (for instance, when going through the airport security or some other procedure that could affect the unit).
So here is my list of things one should know before having DBS surgery. Therefore, without further ado...
<drum roll please>
Tom's Top Things You Need To Know Before DBS Surgery
DBS IS brain Surgery
Whoa, brain surgery?!? Yep, like I said before, that's what freaked me out when I first read about it. But back then my symptoms were minor (oh, those were the days!) Unfortunately, things change as they do with all Parkinson's patients. It's my belief that the benefits of the surgery outweigh the risks.
When they say deep, they mean deep - deep within the brain
That's because the symptoms from PD come from the fact that dopamine cells in the brain are dying and producing less dopamine; less dopamine = more symptoms. These dopamine cells are located deep in the brain in a place called the Substantia Nigra (SN).
To help reduce these symptoms with DBS, the leads have to be placed very near the SN (usually the Subthalamic nucleus or STN). Placing them in that area allows the DBS unit to block those faulty nerve signals that cause a parkie's motor symptoms.
You are awake during surgery
Whaaaat? Yes this is true - you are awake during the surgery. As freaky as it sounds, it is necessary because, as they insert the leads, they want to make sure that 1. You're not having any side effects from the surgery, and 2. Once put in the right place, they actually put a tiny current through the lead to see how it affects your symptoms. In order to be able to gauge this, you have to be awake. I have heard that they may put you more under while doing certain 'unpleasant' things (like drilling... sometimes I wish my dentist would do that) But otherwise you remain awake for the most part.
DBS can help with a number of motor symptoms
Remember, PD is chronic (meaning it doesn't go away) and degenerative (meaning it gets worse over time); and so it is with me - my symptoms have gotten worse, including rigidity (stiffness), slow movement, the cramping from dystonia, dyskinesia, and numerous on/off cycles. DBS can help dramatically with these motor symptoms by sending those electrical pulses to block the faulty nerve signals that cause these symptoms. Not only that, DBS can help a patient reduce the medications that they take - and I know every parkie (myself included) would say that is something they would enjoy!
You still have to keep your expectations in check
You see, it's possible for DBS to reduce symptoms 25% to 80%, but there is NO guarantee! Everyone is different, therefore the results from DBS will be different for each person. Just hope for the best - but also manage your expectations of the benefits you will get.
There are risks (but life is full of risks anyway, right?)
Well, this is brain surgery, to be sure; so of course there are risks. Most of these are in the <2% range, but do include: bleeding in the brain, infection, leads not placed in the proper place, and no benefit from the surgery (for whatever reason). These are very rare, but can happen. But as I said before, I feel the benefits outweigh the risks.
On the other hand, it can be life changing!
I have read and heard many a DBS patient say, after the surgery, that it was life changing! I imagine so, especially if you get a substantial decrease in symptoms and meds. Some of the comments I've heard are, and I quote: "It was life changing for me", "It's been fantastic for my symptoms", "I saw my tremor disappear", and "It is unbelievably wonderful, it feels like a new life".
DBS can continue helping you for 10+ years
It has been shown that the benefits from DBS can last 10 years or more. This type of surgery has been done for the last 20+ years, so the experience factor is high. This is NOT an experimental procedure - it is fully approved by the FDA.
DBS does not damage brain tissue
Unlike other surgeries done for Parkinson's disease (such as pallidotomy or thalamotomy), DBS does not damage brain tissue. This is great, because if better treatments - or even that elusive cure - are discovered in the future, the DBS procedure can be reversed and the leads/unit removed.
DBS is not a painful as it sounds
Ouch! Although the whole procedure sounds extremely painful, it is not - from what I have heard - as bad as one would think. I have heard that the placement of the 'halo' (which we'll talk about in my part 2 post someday) is, well, uncomfortable. However, the doctors will use local anesthesia where needed; plus, the brain itself has no pain nerves, so you won't feel anything while the leads are being placed.
They do not shave off all your hair!
Although I've always wanted to be Kojack (no, not really!), these days you most likely will not have your entire head shaved. Usually just a strip of hair will be removed at the point where they will be putting in the leads. So I may need a new style of haircut for awhile (change is good, but hopefully not a butch!) to help 'disguise' those shaven areas... Hmm, guess I'll need to add 'Talk to my hair stylist' to my list of things to do before surgery!
DBS is NOT a cure. But...
DBS is not a cure for PD. However, there have been recent studies - and clinical trials are going on even now - that may indicate if DBS is done early enough (while you still have some of your dopamine cells left in your brain) that it -could- be neuroprotective (i.e. slow or even stop the disease progression) They are not exactly sure why... but this is even more of a reason for me to have it done now. Just remember - more research needs to be done in this area, so it's better to go into this with the assumption that it will help but not cure. But... who knows? (Note: See the last part of this blog entry for some reference links)
DBS can give you an 'electric' brain
Zap! Well, at least that is what Dr. Michael Okun, a leading authority on PD treatment, calls DBS in his book Parkinson's Treatment: 10 Secrets to a Happier Life. I think it's an interesting, if not 'cool' description of DBS! Hmmm, maybe I can have a T-Shirt made up after the surgery that says 'I have an electric brain' ... or maybe not...
Not everyone is qualified.... You have to go through the 'Preliminaries' first
Ah, you remember me saying that in my first paragraph, huh? You see, they just don't let anyone get this surgery - you have to be qualified. In order to determine if I was qualified, I had to go through five 'steps':
1. Visit at least one DBS support group meeting
I was a little tense when I did this back in November... Never being to any PD-related support group (yet) I wasn't sure what to expect. Luckily for me, the people that came that night were very similar to me as far as disease progression goes. There was even a young lady (80 years old!) who already had the surgery a year ago, so it helped my confidence in the procedure to see that she was greatly improved. And all of us got to see and touch the DBS lead wires and neurostimulator from a demo unit!
2. Psychiatric Testing
The next test I did was to meet with a psychiatrist to make sure I wasn't suffering from depression or anxiety. It's also done to make sure someone is emotionally capable of the surgery - i.e., they won't 'freak out' in the OR! So I had a nice hour long talk with the psychiatrist, who determined I was normal (although some of my friends and family may disagree with the 'normal' part!)
3. Psychological Testing
Then I was off to another test with the psychologist, whose job was to determine if I was OK cognitively. That's because Parkinson's can cause things like cognitive decline and dementia in later stages of the disease, and DBS does not work well on someone who is already experiencing those symptoms. This time, I got to spend about 2+ hours doing puzzles and answering some pretty hard memory questions (how can anyone remember 9 big numbers in a row!). But again, I was found to be fine in that department.
4. On/Off Testing
The last test was the hardest for me - and I am told the hardest for any patient. I had to spend 12 hours without any of my PD meds! So I took my last dose of meds around 7:30pm the night before; and sure enough, I needed a wheelchair the next morning to get into the neurologists office! They then ran their tests to see how 'bad' I was without my meds; once that was done, I was then given my meds (ahhhh...) and reevaluated after I 'kicked on'. A number scale is used for the evaluation - I was a 34 when off meds, and a 15 when on (lower is better). You need to have at least a 30% difference between the numbers in order to expect good results from DBS; since my difference was more that 50% I was more than qualified!
5. Discussion (or as I call it, the Jury)
Like the Survivor series on TV, now it was out of my hands and in the hands of the 'jury', which consisted of my neurologist, psychiatrist, psychologist, the PT folks who tested me, the surgeon who would be doing the surgery, and other people who were involved. They all sat down and discussed/reviewed my case, including the videos that were taken when I was 'off' and 'on'. All have to agree that I was a viable candidate.
I got the news late last week that the group had met and I was approved! So the next step involved for me is to meet with the surgeon in about two weeks. He will discuss the surgery itself, answer any questions (of which I have plenty), and -most importantly- make sure my expectations are correct.
Next Up - DBS Journey Part 2
Well, that's a long post, so I think I'll end at this point. But in the coming weeks I will be continuing the story of my DBS journey, so keep watching the blog to find out how things are progressing! And feel free to ask questions or discuss DBS below!
Thanks again for reading!
For more info on DBS, here are some links: