There is a lot of thought that goes into deciding to have Deep Brain Stimulation. Most of the conversation is around if you qualify for it and what symptoms are expected to get better. Equally as important, there are typically lots of questions around the few days to months following the procedure. Let’s talk about DBS recovery.
Have scheduled help
Resuming normal activity may take up to a month following surgery. Make sure you have a family member or friend with you to help you get around for the first few days after surgery. Great news is that in order to be discharged from a hospital to your home, you need to show that you are safe going home! This involves household walking, using the bathroom, and getting in and out of bed. You will not be able to drive for a week or two after your surgery so make sure you organize rides if needed.
Honeymoon effect
Sometimes right after DBS surgery, you may experience an improvement in your symptoms even though the DBS is not actually functioning yet. The theory is that there are microlesions that happen during surgery that lead to this improvement in symptoms. It is really important to NOT modify your medication until you talk with your doctor. Keep track of what has changed, inform your doctor, and follow their plan.
What can influence your recovery
Having two leads placed at once will extend the duration of your surgery which can contribute to higher surgical risks. The longer duration of surgery will also influence your medication schedule. However, some people are okay with these risks because they can’t do two separate surgeries.
General anesthesia (being put under/unconscious) has been observed to have lower levels of stress, a shorter surgery, and have a faster discharge from the hospital compared to local anesthesia (local numbing but you are still conscious).
Programming will not happen right away
Usually, programming occurs 2-4 weeks after the placement of a lead. You may be asked to attend programming visits after skipping a dose of your medication. If you are unable to drive or your ability to walk is impaired with a missed dose, your programming may be performed as an inpatient procedure. Your first programming session can last for over an hour. Be patient with your programming - it is very rare for programming to be optimal over the first few sessions. It may take several visits before the programming best fits you. Sometimes, people may experience dyskinesia immediately after, hours after, or days after the programming. This actually means that the leads are very well positioned and that you may need a lower medication dose or need to change the stimulation parameters. Some people are allowed to modify the programming on their own, within certain ranges that are set by your doctor. It is very important to always track and document what you are changing.
Weight gain is common
A study published in 2019 found that on average people with PD gain 14 pounds following DBS. It is not exactly known why this happens, but some theorize that your sense of smell and taste may be improved or that your movement is improved so eating becomes easier. Another theory is that a reduction in stiffness, tremor, and dyskinesia following DBS leads to less energy that is expended regularly.
DBS has been shown to be helpful for people with PD. It can be a life changing procedure for many. If you qualify for it, make sure you walk with your providers on what the recovery process will look like for you. Everyone has different comorbidities and health conditions that impact healing.
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