Here’s the scenario: you’ve undergone all of the required tests and you’ve been approved for deep brain stimulation surgery. Now you’re meeting with the surgeon or one of their nurses and they ask you, “what questions do you have?” As someone who has undergone surgery, here are some questions you’ll want to know the answers to:
- What is your complication rate? Surgery is never perfect, and things do happen during surgery. Although complications are rare, knowing your hospital’s complication rate will give you the confidence to move forward. Anything lower than around 3% is considered acceptable, but sometimes you’re likely to hear complication rates as low as 0.06%!
- Will DBS interfere with speech? Sometimes DBS surgery does interfere with speech, and it can often be corrected with DBS units that have steering capability. DBS nurses can steer away from the areas causing the speech problems.
- On which symptoms can I expect to see an improvement? Remember, DBS only helps with motor symptoms that are alleviated with carbidopa/levodopa.
- How long is the surgery? A full bi-lateral DBS surgery with neurostimulator installed can take eight hours. It would take less time to operate on just one side, or just to implant the stimulator. Your surgery time could vary based on many factors.
- How long is the recovery? How long do you stay in the hospital afterward, and how long until the stitches come out? How long until you can go out in public? Some people go for walks the day after surgery, and some spend a week in bed like I did.
- Will you perform the lead and stimulator surgeries together or at different times? Depending on the hospital, the country, and the insurance you have, everything can be done at once or they can operate on one side at a time, and implant the neurostimulator at a different time.
- How long until I get the unit turned on? My DBS unit was turned on after 10 days, but I’ve heard some people waiting up to two months after surgery to get turned on.
- How long is the initial programming? When they turn you on, the initial programming could take four hours or it can take all day. This also greatly varies on your hospital and the skill of the DBS nurse.
- How long does it usually take to fine-tune the DBS unit until it is properly adjusted? Usually, the DBS nurse sets you up with settings that are commonly appropriate as initial starting points. It can take 6-12 months to get properly fine-tuned.
- Will I need to get fine-tuned again every year? As the disease progresses, you will likely need to be adjusted a bit each year.
- In the future, is the stimulator upgradeable? Often, new neurostimulators with new features (like rechargeability and longer battery life) can be installed over time.
Here are some questions you might want to ask about your particular health insurance. Your hospital may or may not have this information, but they can help you find it and you should know the answers before going forward with surgery.
- How much does insurance cover?
- What is your insurance co-pay?
- Are all providers involved “in-network?” One out-of-network team member on the surgery team can cost you a lot!
I am proud to release my new book, Parkinson’s Warrior: Deep Brain Stimulation, A Journey to Relief. The book details my journey with DBS, explains the procedure, and gives hope for those seeking relief from this relentless illness. If you would like to learn more about DBS, I humbly recommend you purchase this book. It is now available on Amazon.com and other bookstores in print and as an ebook.
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Nick Pernisco is the Parkinson’s Warrior, a person with Parkinson’s who has dedicated his life to helping others with Parkinson’s. Get the Parkinson’s Warrior book here. Join the discussion on Facebook.