Deep Brain Simulation from a Caregiver's Perspective

My comments reflect my own experience as a spouse of a patient that has had deep brain stimulation.

My husband Ed's experience was very different from others who have had the surgery. So please don't assume that your experience, if you decide to have the surgery, will be the same as ours. However, I felt it was important to speak at this meeting about some of the things that can happen with and after the surgery.

Since Ed has already told you about his operation and the great progress he is making, I'm not going to repeat that wonderful part of the story. My comments will deal with some of the unexpected reactions that Ed had after the surgery and some things that you should be prepared to happen just in case they do.

After the DBS surgery was completed, Dr. Kelly met with me to tell me how it went. He felt that everything went very well and that we should see good results from the operation. However, he told me that Ed was rather combative during the end of the surgery, and that he probably would be somewhat confused when he woke up.

Although I knew that he would be somewhat confused, I wasn't prepared for just how confused he really was going to be.

When Ed woke up in the recovery room, he was very dyskinetic and restless. He kept trying to get out of the bed and got very annoyed with me because I would not let him get up. He also kept on seeing things in the recovery room that weren't there such as dogs and striped shirts. He was moving so much that they had to delay taking a CAT scan after his surgery because he could not stay still for more than a few minutes.

Once he left the recovery room after many hours, Ed was put into Intensive Care Unit of the Neurosurgery Wing. The next several days did not improve, but actually got worse.

Ed was having hallucinations most of the time. I was never quite sure what state I was going to find him in when I walked into the hospital in the morning. The day after the surgery, rather than finding him in an improved state, I found him strapped to a chair and sitting in front of the nurse‘s station. The nurses told me that Ed had pulled out all his intravenous lines during the night and was attempting to run around the floor and to get out of the hospital. When I asked him why he had done that, he told me that he had heard the motor of an airplane in his room and that the airplane was going down and that he was on the airplane and needed to get out fast.

He was convinced that all the nurses and doctors were in a conspiracy against him and that I was being fooled by them all. After sitting with him for about 5 hours one day without having anything to eat, I went to the cafeteria for a few minutes to get something once I thought he was asleep. When I returned to his room, there were 2 nurses there and blood all over the sheets. Once again he pulled out his intravenous lines and was attempting to get out, thinking that the hospital was on fire.

This behavior continued for the 8 days that Ed was in the hospital, 3 days longer than most patients who have this surgery were. Besides his confusion, hallucinations and paranoia, Ed's Parkinson's symptoms were much worse than before the surgery.

Since he had not taken any Parkinson's medication since the first day in the hospital, Ed could hardly move. Although he was put back on medication before leaving the hospital, the dosage was very low, approximately 80% less than he used to take, and the pacemakers in his chest were not yet turned on. As a result, his walking consisted of shuffling his feet and almost falling overtime he tried to move. His balance was terrible, his drooling was constant, his voice was in a whisper and his tremors were the worst that I have every seen.

Although from a rational standpoint, I knew that his pacemakers were not yet turned on, it was difficult to deal with his confusion and with the physical aspects of his Parkinson's and not wonder more than once O My God, what on earth did we do by having this operation!

After 8 days in the hospital, Ed came home. Although his hallucinations were less intense than when he was in the hospital, he was still very confused at home. He thought that our appliances in the kitchen had price tags on them, and that our German Shepherd dog was made of wax.

He could not dial the telephone correctly and was convinced that all his friends changed their telephone numbers and didn't tell him. Of course, he was dialing the wrong numbers but I couldn't convince him of that.

Ed's days and nights were also reversed. He would take several naps during the day, then at 2:30 in the morning, he was ready to take a shower and start the next day. Although that was Ok for him since he was on disability, it was difficult for me who had to get up at 5:30 each morning and get ready for work.

This continued for a couple of weeks after Ed's surgery. However, little by little, he was less confused and his hallucinations were completely gone by the end of the second week.

On the day that we were to come in to see Dr. Kelly to remove his staples from the surgery and Dr. Beric to turn on the pacemakers, I was concerned as to how I would get Ed to the two different offices. However, Ed was so excited that the pacemakers were to be turned on that he walked better than he had since the surgery.

Although the pacemakers were very low when they were first turned on, some of Ed's Parkinson's symptoms dramatically improved with the first adjustment. His drooling was almost gone, his confusion really began to clear up and for the first time in many years, he began to stand straight. Also, the Parkinson mask was completely gone from his face and he showed expressions on his face that I hadn't seen in years.

The other thing that happened was the dramatic improvement in Ed's outlook. For the first time in many years, he would get up in the morning and tell me that he felt great.

Things continued to improve as the adjustments continued and as you can see for your self, Ed is doing great after his surgery.

Although Ed's reaction to the surgery was not the norm and most likely is not the way that you or a loved one would react, I think that it's important to know that you may be in for a difficult time immediately following the operation.

The Parkinson symptoms will be worse than before the operation and the reactions to the surgery may be unpredictable.

However, I'm thrilled with the final results from the surgery and just want to stress again that patience is needed and that things will get better with the passage of time.

Thank you.