Survey Says: Your Experience As A Patient with DBS
Posted Jan 20 2014 10:52am
Recently, I posed a survey on patients with Parkinson's who had DBS (Deep Brain Stimulation). My reason for doing this was two fold. Number one, I wanted to diffuse any misconceptions someone may have regarding the procedure and its outcome. Second, I wanted people to be certain that this procedure was in no way a cure. It is a procedure that, as a person with PD, is buying you 'quality' time by possibly reducing/eliminating some symptoms, cutting back on current medications, regaining some loss of movement.
The survey is below, with the answers averaged/combined to make it simpler to read.
I want to thank all those who so graciously took the time to answer and be a part. I appreciate it.
PATIENT'S EXPERIENCE WITH DEEP BRAIN STIMULATION
1. How long since you had DBS surgery? Of those surveyed, their surgery dates were within the last 6 months to 5 years.
2. What were your expectations in having DBS surgery?
– Expectations noted were: gaining the ability to walk normally again without the fear of falling; stiffness would be lessened/eliminated [most popular expectation]; medications would be cut back; dyskinesias would no longer be present; relief from tremor; relief from rigidity; greater mobility.
3. Do you feel your expectations were met, exceeded or fell short? Please explain.
– The majority had a resounding yes, stating improvement in gait, relief of tremors, lessened dystonia and dyskinesia, improvement in handwriting, stronger voice, elimination/relief of tremors. There was one patient who felt it didn't make a difference and they, in fact, feel they have gotten worse.
4. Going into this procedure, were you completely aware that DBS was not a cure?
– All responded with a 'Yes', but some added that they were hoping it might or that it would for certain lessen symptoms at the least.
5. Was the surgery what you expected? Better? Worse? Please elaborate.
– All patients felt the surgery was as expected or better. Three noted they could feel no pain but could hear the drilling and it was unnerving; most patients were only awakened when the placement location was being tested; one patient considered the surgery itself a 'breeze'.
6. What was your experience post surgery? (i.e. took longer than expected to recover, stimulator insertion more painful than expected, etc)
– The main complaint post surgery is the pain where the stimulator is placed into the chest area; no head pain noted by any patients; surprised to be up and driving again so soon afterward; healing was quicker than expected; sleep was better post surgery; back to normal within a week. For one patient, they did note post surgery was very stressful for them and they felt they needed to be cautious regarding falling and being bumped.
7. Given your circumstances with PD, would you do it over again? Why or why not?
A resounding yes by all, even those for whom it wasn't quite what they had hoped for. Comments to the question were: If the patients could have the same surgeon they would do it again [this was mentioned a few times]; patients noted they felt they had ben given extra time to live with a better quality of life; some patients noted that they wouldn't have waited so long to do it.
8. Are you on more, less, or about the same meds as prior to surgery?
– For all but one patient, they are on the same or, as was the case with most responses, medications were cut in half or more. However, some medications have been increased since, still not to the extent as before having DBS. This is due in part to some patients having only one side of the brain done and the symptoms are more noticeable/increasing on the non-DBS side.
9. Do you feel you had adequate support pre and post op and if not, what would have made it better?
– Great support from family, friends, medical staff, Medtronics rep(maker of DBS stimulators), neurologist.
10. On a scale of 1-5, please rate/circle your overall DBS experience:
– Average score was 4.1.
11. If you had any advice/suggestions for someone going in for this procedure, please share.
– Make sure you know what it does and doesn't help. By not knowing, your expectations may be higher than it can meet and you'll only set yourself up to be disappointed; find a doctor you trust; ask questions; don't wait for the right time. Now is the right time; gather any and all info that you can; ask about 'side effects' (if there is a downside); make a list of pros and cons and weigh them carefully.
12. Any other comments/info you think might be helpful/beneficial?
– Experience counts. Find a surgical team with a GOOD track record.
And lastly, especially for caregivers – One caregiver who answered the survey for her husband added these comments: “…Every day is a new day and you never know what challenges you will face. Today may be full of difficult moments and tomorrow may be a great day, you just never know. It is always helpful to have a routine and stick to it. We found that changing anything in the routine made for a tough day or two until we got back into our9 routine. I would also say to any caregiver that you MUST take some time for yourself. In the beginning of our journey that was really hard for me, but now that my caregiving season has ended, I realize that without that “me” time, I would never have been able to care for my husband through the end of his journey. Caregiving is tough work, especially in the last stages, but I can truly say that I have NO regrets in taking care of my husband at home until God called him home to heaven.”