A couple of weeks ago, I asked “What would you ask Medtronic about DBS?”. Well there were many questions, submitted, so here are the top ten questions that you, the readers asked. Drum Roll Please…
1. What are the benefits of DBS therapy? What about the risks?
DBS therapy has been approved by the FDA to treat the movement symptoms of Parkinson’s: shaking (tremor), stiffness (rigidity), and difficulty moving (bradykinesia).
It is important to know that DBS therapy is not for everyone and does have risks, which may include surgical complications, infection, and failure to deliver therapy as needed and/or worsening of some symptoms. If you are considering DBS therapy, you should always discuss the potential risks and benefits with your doctor.
For more information on risks, please go to IMPORTANT SAFETY INFORMATION
2. Does one really need to exhaust all medications before being considered for DBS? Or can the surgery be performed sooner?
Often times, people think DBS therapy should be put off as a last resort option. This is not true. There is a window of opportunity for DBS. This window opens when your body isn’t responding to medication as well as it used to… but before your medicine stops working completely. If you wait too long, the window will close and DBS therapy will not be able to help you as much as it could have had you asked about it sooner.
3. Is there a point where DBS stops working?
It’s hard to say – Your Parkinson’s disease will continue to progress and your stimulation settings may need to be adjusted over time. While DBS may help treat the movement symptoms of Parkinson’s disease, such as stiffness, shaking, and difficulty moving, it is not a cure.
4. Can you go through airport security when you travel?
You sure can! If you decide to get DBS therapy, you will receive a DBS identification card. You should take it with you when you travel. Here’s why: Walking through an airport security gate may cause an increase in stimulation or additional stimulation. It could also turn on or turn off your neurostimulator. So you should show your DBS identification card and request a hand search. If an airport security wand is used, ask the security personnel to avoid placing the wand over your neurostimulator. If you must pass through the security device, approach the center of the device, walk normally, and do not lean on or linger at the security gate.
5. Can someone with DBS therapy have an MRI scan?
Under certain conditions, yes, receiving an MRI is possible. All Medtronic DBS systems are designed so that an MRI head scan is possible with proper safeguards. In fact, only Medtronic offers deep brain stimulation systems that are FDA-approved for MRI head scans, under specific conditions of use. Talk to your doctor if an MRI scan is prescribed for you
6. How often does someone with DBS therapy need to get their battery (neurostimulator) replaced?
On average, and depending on programmed settings, an Activa SC or Activa PC neurostimulator battery lasts 3 – 5 years. If you and your doctor decided that a rechargeable would be a good option for you, the Medtronic Activa® RC neurostimulator is rechargeable. Even though it is rechargeable, in time it will need to be replaced. The Activa RC neurostimulator lasts for 9 years.
7. Can you see the DBS system in your chest?
It depends on your body build. The DBS device may be noticeable as a small bulge under your skin. Or it may not be noticeable at all. Your doctor will try to place the device so that it’s the most comfortable and cosmetically acceptable.
8. Can you feel the electrical stimulation when the stimulators are on?
Most people don’t feel the stimulation that’s part of DBS at all. Others feel a brief tingling sensation in their arms and legs when the stimulation is first turned on.
9. What kind of testing do I need before I am considered for DBS?
Each neurologist may approach testing before DBS differently, however, some tests you may encounter are:
· Blood tests
· Electrocardiogram
· Chest X-ray
· MRI / CT
· Levodopa Challenge – (Testing your response to Levodopa / Sinemet)
· Neuropsychology test
10. How will I know when I’m ready for DBS?
A neurologist specializing in movement disorders will give you the best answer, depending on your personal situation. In general, the right time is when your medications are not as effective as they used to be, but before your symptoms stop responding to medication. Here are a few things to ask yourself:
· Are my medications are wearing off faster, and I’m finding myself waiting for my next dose?
· Am I increasing both the number and frequency of my medications, and are they providing less symptom control?
· Am I planning my daily activities around my medications?
If you didn’t get your question answered, you may call Medtronic Patient Services at (800) 510-6735. Patient Services hours are Monday-Friday 8 am to 5 pm Central Time.
I can’t get a airport identification card from the hospital or my doctors and I have not been shown or had any paper work on adjusting the thing inside me. Can I get any of this myself from you direct? Although airport security can see the device outline very clear they still want documentation to say what it is and when it was inserted as it looks very suspicious and it’s electrical.
As I have attempted suicide prior to the operation how likely am I to attempt it again?
Should I have had the surgery as I do think about suicide several times a day being very depressed and refused medication.
Is there any problems with having the procedure reversed?
I have had the surgery 12 months now and still not had it switched on will this have any effect when they do decide to switch it on? Will it still work as normal?
Wow! That’s alot of unknowns for you to be dealing with. First, where to you live? Then who manufactures the stimulators you have in your chest? If it’s Medtronic, I would contact their patient support line, https://www.medtronicdbs.com/parkinsons-ongoing-therapy/help-patient-services/index.htm or call: 800-510-6735. They can also help you wtih an identification card. As for suicidal thoughts, your Doctor should be informed that you’re still having these thoughts and I’m not sure why they haven’t turned your device. But as for reversing it, they would just remove the hardware, but I’m don’t know why you would do that. Sorry I don’t have better information for you.
I would like for kevin kalchthaler’s question be answered.
I would like to see the subject of tuning addressed.
I have DBS installed and wonder about the cells that are damaged during placement of leads in the brain. I was told, and it came to be, that I may get a speech impediment. It is transient but I do have trouble pronouncing words and I tend to slur words during certain periods of the day. However, so far (8 months) I am very happy to trade off a slur for relief of most symptoms, including cervical dystonia, right leg tremor and dyskenisia from having to take too much sinemetl.
Allison, thanks for bringing this subject up on your blog.
Thank you!
Has anyone thought to ask about what would happen to the transmitters should an auto accident happen and an airbag deploys and impacts against on or both units? Do you have to take any special precautions if you are outside during thunderstorms?
A question we’re all dying to ask– does it have any impact on your Perky relations with significant others?