Deep Brain Stimulation: On and Off

My husband Richard had his DBS surgery (both sides) on June 9, 2016. Instead of just one night in ICU, he spent 2 additional nights on the Neurology floor for an initial 3-night stay. He walked out of the hospital (literally, since all wheel chairs were in use) and came home Sunday afternoon, June 12. While he was at home, Rick napped a lot and ate well but with more swallowing problems than usual. He became a little confused on Monday but I had read that after DBS, that can happen. BTW, the surgeon declared the surgery a success while Rick was in the recovery room after surgery.
On Monday night, after the Thursday surgery, Rick suddenly complained of a “killer headache.” When I asked him how it was on a scale of 1-10, he said “10.”
I said, “You should take some Tylenol.” He got up and walked 18 ft to the bathroom, got a bottle of Tylenol out of the medicine cabinet and I heard a thud. I ran in and found him sitting on the bathroom floor picking up the pills and putting them into the bottle, one by one.
I called the number on the handout we’d gotten after surgery and spoke to someone on call who didn’t know anything about DBS but thought that I should bring him to ER. My husband went to our bed and said he was going to lie down and read. Within a few minutes he rolled off the bed onto the floor. I told him we were going to ER and he said to just let him go to sleep on the floor.
The ambulance arrived and took him to the hospital where they did a CT scan. There was bleeding on the brain and he was admitted to Neurology. Within a few hours he was transferred to ICU. That was June 14th – (surgery was June 9) – and he was in ICU then on the neurology floor until June 23 when he was transferred to a “skilled” nursing facility.
After 6 weeks to the day, 42 days after the DBS surgery, he was discharged from the dismal halls of the nursing facility. While there he did get contracted Physical, Occupational and Speech Therapy which helped him as we waited for the edema from the bleeding in TWO places to go down and the blood to be absorbed by the body.
My husband displayed seizure like symptoms in the hospital, spikes in heart rate (he has always had perfect/low blood pressure/healthy heart.) At one point I was asked for permission to put a tube into his stomach to give him meds. I referred the nurses and doctors to his Advanced Directives (he had 2 on file at the hospital) and they worked with his wishes by crushing his meds in applesauce.
He was fed and could only tolerate pureed food for weeks. No water or coffee or other thin drinks. He could not walk when he was transferred to the nursing facility. He was in a padded hospital bed and for at least 24 hours he had his hands tied down. He was a high fall risk and had to have 2 people walk side by side with him to move him.
Rick came home on Thursday, July 21. He is still not “himself” but much better than when he was admitted the second time. His neurologist told us two weeks ago that it could take a year to get back to 98%.
Tomorrow (July 25) we have appt. with the neurosurgeon’s PA who will want us to schedule part two (implanting the generator). The neurologist recommends we go ahead, that Rick goes to a rehab facility after the second surgery and when stable she will program his device.
Our primary care physician, whom we went to see the day Rick was discharged from the nursing facility thinks we should wait a minimum of 2-4 weeks before we decide. She thinks he should get used to being home, get stronger, gain some weight (he was down to 137 when he left hospital).
Meanwhile, his left side tremors (the issue we were trying to correct with DBS) are barely visible now. The surgery or the new regimen of meds he’s on??? He’s still taking Sinemet carvadopa levadopa but 4x a day, not 5 like before surgery. He is also on several new meds – one is a narcotic to help keep him awake (one bleed was in the sleep-awake center of brain), a blood pressure med (again, never a history of high blood pressure – was always low). We checked and to keep on these new meds would cost us hundreds of dollars a month (with good insurance).
My husband, aside from a PD diagnosis in 2005, was in great health. In the days before the surgery, he drove, he mowed the lawn, he went out to celebrate his 77th birthday with friends on June 6.
He has no memory of the day of surgery and has forgotten most of the last 6 weeks. At one point the neurosurgeon’s PA told me to take video of unusual behavior (he had started a tremor on his right side, but when a doctor came to see Rick, the right side tremor wasn’t manifesting itself). So, as a result, I took photos or videos of every day Rick was in the hospital and nursing facility. I finally showed him some of the early videos which Rick couldn’t believe. None of his doctors have ever been interested in seeing them.
After DBS Rick ended up with two bleeds in his brain. One was on the right side and the other in the subthalamic nucleus. A CT scan was done the morning after surgery. After obtaining all his medical records and reading them, I discovered that the right side bleed was evident in that CT 24 hours after DBS surgery. He was released from the hospital without another CT. When he went to ER 4 days later, the scan showed TWO bleeds.
I wonder: why didn’t they do another scan before he was discharged?
So what would YOU do tomorrow? Would you let the neurosurgeon go in and hook up the wires to a generator that needs to be implanted? Go under general anesthesia again? Risk taking a step backward? I can’t see that the second surgery will make any of Rick’s current problems improve. We have started talking about Stephen Hawking and how his cognitive skills are what he thrives on. He is no less a man because he is in a chair and has so many physical challenges. We want our life back – if this is the best it’s going to be, then we’ll take it. We don’t want another 42-day nightmare.
DBS is a very invasive procedure and I’m not sure potential patients understand the “other” possible outcome. Most videos I see or articles I read resemble a marketing or sales tool for DBS. There needs to be an objective overview for every potential patient.
If you want more information, don’t hesitate to contact me.
Michele Postal
Eugene, Oregon
mpostal2013@gmail.com