DBS does not cure PD, and it does not stop the progression of PD. Although some feel it may slow the progression, that is unproven, and remains to be seen. DBS does provide relief from the symptoms - as much relief as you get when the medications are working at their best (with one exception - it can help the tremor, even when medications don't). That begs the question, why not just continue to take the medications and avoid brain surgery altogether? The answer is almost as complicated as this disease, I think, but I'll do my best.
Why DBS?
PD is progressive - the longer you have it, the worse it gets - and more and more medication is needed to keep up with it. As the amounts of medication increase, and the length of time they are taken grows longer, the side effects also increase - and they can be pretty troublesome. Some of the PD medicines just cannot be tolerated at all, because of the side effects. Every person is different - not only in how PD affects them, but in how the medicines affect them, as well.
Also, as the disease progresses, the medications begin to "wear off" between doses, creating "on" times - when the medications are working well and the PD symptoms are under control, and "off" times - when the medications are not working, and the PD symptoms are keenly felt and very apparent. It makes each day a bit of a roller-coaster ride. As time goes on, the "off" times will get longer, and "on" times will shorten, creating a roller-coaster ride with more "downs" than "ups". When you get PD at a younger age than most, you have a lot longer to live with the disease - a lot longer to be on the "ride". So time is a big factor when you're trying to figure out the best way to cope with it.
DBS provides symptom relief without the side effects of medications, and DBS provides symptom relief at a consistent level, without the "wearing off" that happens between doses of pills. DBS does not totally replace the need for medications - but it can significantly decrease the amount of medication needed, therefore decreasing the side effects - and making better use of time, because you're putting off the heavier doses of medicine - at least for awhile.
All Things ConsideredThere is much to take into consideration when making this decision. First of all, your doctors must consider you a good "candidate" for the surgery, before anything else can take place. Not everyone will have good results from DBS. I was told I was a good candidate for the procedure because my tremor is a predominant symptom, and that usually responds well to DBS; I am experiencing a lot of troubling side effects, some of which make it impossible for me to take some of the PD meds; I do respond well to Sinemet, the standard PD drug (if you respond well to Sinemet, you will most likely respond well to DBS); and I am relatively young and relatively healthy, so I have a better chance to achieve a great benefit from this surgery, if successful.
DBS does not fix everything. Gait and balance are a few symptoms that DBS does not seem to help with very much, along with many of the "non-motor" symptoms of PD. The risks of DBS surgery are small, but they are there. Some of them are - the risks of any brain surgery: bleeding in the brain, seizures, infection; the risks of side effects from DBS: speech problems, weight gain, depression; and the risks of device complications: infection, rejection, readjustment surgery if problems occur. The good news is that these risks go down in direct proportion to the competence and skill of the neurosurgeon. I've got a great one - with lots of experience!
DBS is a life-long commitment, I suppose - but then, PD is a life-long disease! Unless a cure is found, or something better comes along, or there is a problem with it - DBS will be a part of my life for the duration. Having it "installed" is just the beginning. It has to be programmed, adjusted, and tweaked - along with the medications - until the right combination is found for optimal results. And as the disease progresses, more adjusting and "tweaking" must be done.
Life with DBS will take some getting used to. For instance, it has been suggested that anyone with DBS should have a med-alert bracelet that says, "DBS, NO MRI!". Now, my understanding is that there actually are certain kinds of MRI's that you can have done, under the direct supervision of your DBS team of doctors - but a regular, run-of-the-mill MRI is out of the question - it could actually be deadly. Security systems can be a problem. They can turn your stimulator off, or mess up your programming, or something. I will have a remote control so that I can turn the stimulation off and on myself, but there are some security sytems that I'm just going to have to avoid. I'm not a "frequent flyer" by any means - but the next time I go to an airport, I'm going to have to go through security the old-fashioned way!
I will also have to get used to the idea of more surgery, in all likelihood. Before this, my only surgical experience has been two C-sections. There's just something about having a baby at the end of the ordeal that takes your mind off what you know is going on - on the other side of that sheet! Well, that is unless your husband can see beyond the sheet, and is giving you a blow-by-blow account of which internal organs have now become "external" so that they can get to the baby... Actually, a C-section is pretty good practice for DBS surgery in one way, at least - being awake during surgery! More on that later. But the initial DBS surgeries (there are two) will most likely be followed by others.
First of all, I am only having one side of my brain "wired" this time - this is called "uni-lateral DBS". My symptoms are mostly on my right side, which is controlled by the left side of the brain, so that is the side that will have the DBS, first. It's a pretty sure thing that I will eventually have symptoms on my left side, as well. When that happens, I will go through all of this again, for the right side of my brain. I could have opted for "bi-lateral DBS", and had both sides of the brain "wired up", but only turn the left side on for now, and turn the right side on when needed. That sounds very logical, but there are reasons for only doing one side at a time - reasons that make sense to me, to Kenny, and to Dr. Levine, the neurosurgeon. (I won't get into them now - if I go down every possible "rabbit trail" - I'll never get this done!)
Also, the neurostimulator which will be placed under the skin near the collarbone - is a battery-operated device. And changing the batteries - will require surgery (but at least it's of the "outpatient" variety!). How often that needs to be done varies with each patient - but usually, I think it's every three to seven years. And if there are any problems with any of the hardware - the leads, the lead extensions, or the neurostimulator - it will probably require surgery to fix, or replace, the problem.
The Decision
Well, having laid all of that out, I think it is understandable why the decision to have DBS has not been made lightly, or quickly. That whole process may be the subject of another post some day, but for now, I think I'll just say this -
I found a "yahoo group" for those who have had DBS, or their family members, or those who are considering it. I think I have learned more about DBS from that group than any other source - at least the practical aspects of it, for sure. You just do not get a "feel" for what it's like living with DBS from the articles and books written on the subject. But reading what people who have actually gone through it have written - that's an eye opener! When I was pretty much agonizing over whether or not to go for this surgery, I posted a question to this group - I asked them several things, but the main one was - was it worth it? So many kind and wonderful people responded - they all had different stories, different problems with DBS, different "bumps in the road" and frustrations. But I think they all had the same answer to my main question. They did not use the same words, but they were all saying, in effect - it's not perfect, there are problems, you have to be patient, there will be new obstacles to overcome, and it's not a cure - but I'd do it again in a heartbeat. It's changed my life.
Although that was not the deciding factor for me, it was a big step towards my ultimate decision to have this surgery. I am thankful for these people.
So, in less than a month, I'll be getting "another hole in my head". Why do I say that? Well, a few weeks ago, we were sitting in a Prayer Meeting at our church. I had just gotten my surgery date, and Kenny was going to mention it as a prayer request. I didn't expect an emotional, worried appeal, with a tear rolling down his face or anything - that's just not his style. But, he still surprised me. He raised his hand, and when called upon, simply said, "Janet's going to have a few more holes put in her head on August 5th - pray for her."
What a blessing he is - he does not let me take myself, or any of this stuff, too seriously - unless I really need to for awhile - and then he does. I am thankful for my husband.
I am thankful.
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