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!


  1. I had mine 2 years ago. Got my life back. I take no meds now. If you did not know I have Parkinson's, you would never know. Life is AWESOME.
    The best part to me is my balance, my speech and my thought process really improved. DBS is a wonderful procedure. I'm so very glad it worked for you too. Have an awesome weekend.

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