Insights from Dr. Ihtsham Ul Haq and Tom Liodice on APDA’s Dr. Gilbert Hosts
Deep brain stimulation (DBS) and focused ultrasound (FUS) are two medical procedures that may be considered for certain people with PD to help alleviate symptoms.
On a recent episode of APDA’s Dr. Gilbert Hosts, I spoke with Dr. Ihtsham Ul Haq, a movement disorders specialist with a particular interest in DBS and FUS for Parkinson’s disease (PD) and Tom Liodice, a person with PD who recently underwent deep brain stimulation (DBS) . We covered a lot of ground during the broadcast and both Tom and Dr. Haq answered many questions from the audience. (Just click the video below to view). For your convenience, we have also listed the topics and questions from the episode below with timestamps, so you can skip to what interests you most. Additionally, today in this article we are addressing some of the topics and questions we didn’t have time to get to during the program.
1:30 Dr. Haq introduction
17:44 Tom Liodice, person with PD who had deep brain stimulation (DBS) surgery
Q+A
21:25 Dr. Haq: Are DBS and focused ultrasound (FUS) mutually exclusive or can you get one and then the other or vice versa?
23:24 Tom: What activities do you need to avoid after DBS?
24:26 Dr. Haq: People with cognitive issues may not qualify for DBS. Could they get FUS?
26:12 Dr. Haq: If the only issue is tremor control, is that a reason to get FUS over DBS?
27:49 Tom: Did DBS change your medication requirement?
29:13 Dr. Haq: What are the long-term consequences of DBS and FUS?
31:31 Tom: How did your symptoms change after surgery?
32:59 Dr. Haq: If you are awake for DBS and have tremor – how is the surgery performed when you are shaking?
34:05 Dr. Haq: Can you discuss the importance of skull density in deciding whether you can have FUS or not?
35:11 Tom and Dr. Haq: How did you find a center that does DBS? Did you have a problem with insurance coverage?
37:56 Dr. Haq: Will DBS or FUS help freezing of gait?
39:42 Tom: Can you feel the DBS apparatus in your body?
40:53 Dr. Haq: What is the future of DBS? Are there advances coming?
43:31 Dr. Haq: If you have a heart pacemaker, can you get DBS?
43:48 Tom: Have you had any issues with traveling and security checks with your DBS device?
44:53 Tom: Can you get an MRI after DBS?
45:32 Dr. Haq and Tom: How do you choose between the three types of DBS devices available for PD?
48:52 Dr. Haq and Tom: How long does it take to actually get DBS?
52:50 Dr. Haq and Tom: How much time do you need to wait between either DBS or FUS on one side and the other?
55:24 Dr. Haq and Tom: Can DBS or FUS affect depression?
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Additional Questions About Deep Brain Stimulation & Focused Ultrasound for Parkinson’s Disease
Q: What happens if the deep brain stimulation battery dies?
A: If your DBS battery dies, your PD symptoms will return until the battery is replaced. You may have to take more medication in the interim until you can get the battery replaced. The actual replacement procedure is straightforward and can be done at an outpatient surgical center (you won’t have to stay the night). Please note, that if you have regular follow up with your neurologist, the battery life will be checked and the replacement can be done before the battery completely dies.
Q: Does deep brain stimulation help the pain of PD?
A: Typically, DBS helps the symptoms that are helped by levodopa. Sometimes, people experience pain as an OFF phenomenon, when the effect of their medications wanes between doses. If this is the case, then DBS may help pain. Sometimes pain in PD is associated with dystonia, or twisting movements of the limbs, neck, or trunk. Dystonia can be a side effect of PD medication or a motor symptom of PD itself, both of which can be improved with DBS. Other types of pain may not be responsive to DBS.
Q: I have heard that focused ultrasound can help deliver Parkinson’s disease treatments to the brain. Can you explain that?
A: While high intensity FUS is a treatment for PD, low intensity FUS can be used in an entirely different way to help treat PD. This type of FUS may allow for disruption of the blood brain barrier. The blood brain barrier refers to the cells that line the blood vessels within the brain which keep foreign substances, such as toxins and microbes, in the bloodstream and out of the brain.
Normally, this mechanism is advantageous and protects the brain. However, the blood brain barrier may also keep out molecules that could help to treat brain diseases. Therefore, disrupting the blood brain barrier could allow for penetration of these molecules into particular areas of the brain. A whole variety of different molecules such as antibodies, nerve growth factors, and gene therapy may be able to take advantage of this approach. Further research is necessary to determine if this will be a useful method for drug delivery into the brain.
Q: Can speech worsen after deep brain stimulation?
A: Various speech disorders have been reported in people who received DBS surgery for PD, including an increase in stuttering, a lowering of speech volume, and a decrease in articulation. These changes are likely a combination of the effects of the DBS surgery and disease progression that continues to take place over time. Certain clinical features may predispose you to speech problems after DBS including poorer articulation before surgery and longer disease duration. If problems with speech develop after surgery, your neurologist can make adjustments in the settings to try to help (using lower frequency settings). Speech therapy can also be beneficial.
Q: Do you have to have taken levodopa to be eligible for DBS or FUS?
A: Most centers that offer these procedures will want to know what your response is to levodopa before considering you for a procedure. That is because the positive effects that a person gets from DBS and FUS tend to mirror the positive effects that that person gets from levodopa. One exception to this rule is tremor which can be more responsive to DBS or FUS than it is to medication. Therefore, if a person’s tremor is not responsive to medication, that will not hinder the decision of whether to proceed with a procedure.
However, everyone’s clinical situation is different. In certain cases, a person with PD may not tolerate levodopa well (due to dizziness, nausea, etc.) despite the best efforts of the movement disorders physician to control these side effects. These side effects may impede the ability of the movement disorders physician to determine if the levodopa improves the movement symptoms of PD or not. In these situations, the procedure may proceed without clearly understanding the person’s levodopa response.
Q: What is the “honeymoon effect” that people often feel after DBS surgery?
A: Sometimes, PD symptoms improve immediately after the DBS electrodes are implanted because of a “microlesioning” effect. That is, a small lesion is created where the electrode lies which causes the same effect as the lesion created by FUS, or improvement of symptoms. This effect occurs before the system is turned on and may last a few days to a few weeks and then will wane. Once the system is turned on in your physician’s office, then the positive effects will return.
Q: Do deep brain stimulation and focused ultrasound address dyskinesias?
A: Because DBS and FUS may improve motor symptoms of PD, they often allow the person with PD to lower their medication doses. Because dyskinesias are a side effect of PD medication, by lowering the dose, dyskinesias can be improved.
Q: If you carry a certain gene for PD, does that change your response to DBS?
A: There have been numerous studies looking at people with particular genetic mutations and their response to DBS, which were summarized in a review paper. All the studies confirmed that DBS is effective for motor symptoms of PD regardless of genetic status. Although certain studies highlighted particular differences in the response to DBS in people with particular mutations, the differences were not sufficient to withhold DBS from a person with any of the studied mutations or push a person to do DBS with any of the studied mutations.
Q: How much of the head must be shaved for DBS and FUS?
A: For the DBS procedure, the incisions are typically about a third of the way along the head above the eyes and roughly in line with the ears. They are about the size of a quarter. The head must be shaved enough to minimize infection risk, so around two inches square around the incision site. Sometimes people shave their heads, so it all grows back the same length, some choose not to. For FUS the whole head needs to be shaved.
Q: When DBS surgery is done awake what type of sedation is given so that anxiety isn’t an issue?
A: When the surgery is done awake, light sedation is given. Precedex and propofol, with fentanyl as needed, is a typical option. Often patients will receive these short acting sedatives from the anesthesiologist during prep which can be turned off in time for the electrode recordings to take place with the patient awake.
Tips and Takeaways
- Listen to a very interesting broadcast dedicated to answering your questions about deep brain stimulation and focused ultrasound, providing both the doctor and patient perspectives.
- Talk with your doctor about whether one of these procedures is right for you.
- APDA’s publication on DBS may be helpful to those who want to learn more.
- If you have a PD-related question, you can submit it to our Ask A Doctor portal.