“Expectations were like fine pottery. The harder you held them, the more likely they were to crack.” ― By Brandon Sanderson, "The Way of Kings"
Some people with Parkinson’s Disease (PD) who have had Deep Brain Stimulation (DBS) surgery say that their lives have turned out for the better through the miracle of DBS. Others are disappointed when the results of DBS don’t meet their expectations. Successful DBS is related to realistic expectations.
Reminiscing about my DBS in 2005, I don’t remember much talk about goals or expectations for DBS surgery. I feel grateful to be accepted as a candidate for this potentially life-changing surgery. I do not analyze my expectations in terms of gait, balance, tremor, stiffness or shakiness. I only want to “feel better.”
During the DBS process, my husband, Tom has minimal and guarded expectations about DBS, mentioning something vague that he would consider it successful surgery if I improved by 1% to 5%. I was confused about what kind of improvement he is referring to.
No one talks about DBS expectations in 2005 while everyone talks about DBS expectations in 2016. Everyone includes the patient, the patient’s family and friends, and the DBS surgical team. In this democratic group, it’s important that expectations are clarified, that the similarities and differences of expectations are identified, and that some consensus is developed among these expectations.
People often tell me that “your expectations are unrealistic” and that “you need to lower your expectations.” The following are some of my unrealistic expectations:
- After DBS surgery, I expect to feel like I no longer have PD, like I felt BEFORE I was diagnosed with PD--so full of life and naively thinking that I was invincible. But I was back to full-fledged PD with my shaky hands and arms and wild movement of my legs and feet until my programming was efective.
- I question if I might not require any PD meds after DBS. Although I am able to reduce the dosage of my PD meds by about 50%, I now anticipate that I will take PD meds for the rest of my life, particularly when my medication cycle frequently fluctuates between “on” (working) and “off” (not working).
So, what’s not to expect from DBS?
- Don’t expect DBS to be a cure for PD. There is currently no cure for PD, and it continues to be a progressive and chronic disease.
- Don’t expect DBS to prevent the progression of PD.
- Don’t expect that you will qualify to be a DBS candidate. If it happens that you do qualify, be appreciative that you have an additional option to consider for your PD treatment.
- Don’t expect that one DBS programming session is all that you require. It frequently can take up to six months or more for optimum programming and adjustment of your medication.
- Don’t expect that DBS can relieve ALL of your motor symptoms such as tremor, dyskinesia, dystonia and rigidity ALL of the time. But do expect DBS to manage SOME of these symptoms SOME of the time. Generally, DBS does a good job of managing the motor symptoms of PD.
- Don’t expect that DBS to be a treatment for your non-motor symptoms of PD such as speech, swallowing problems, freezing, and gait and balance difficulties. Sometimes these symptoms worsen as a result of DBS.
- Don’t expect that after DBS you will be functioning like an athlete, when in reality, you are living more like a couch potato. For example, if you haven’t run a marathon before DBS, don’t expect to run one after DBS.
What To Expect from DBS
Expect DBS to improve your tremor, rigidity, bradykinesia (slow movement), off times, and dyskinesia.
Once identifying your expectations of DBS and determining if they are realistic, you must accept the potential benefits and drawbacks of DBS and that whatever results you experience from DBS, that you will have the courage and strength to handle it.
For more information on Expectations and DBS, check out the following book: "DBS: A Patient Guide to Deep Brain Stimulation" by Sierra M. Farris, PA-C and Monique L. Giroux, MD. The Symptoms and Expectations Exercise is on pages 23-24.