By Debbie Dakin
My husband, Robert “Bob” Dakin was diagnosed with Essential Tremors about 30 years ago. About 10 years ago the VA diagnosed the tremors as being caused by his exposure to Agent Orange while stationed in Vietnam. Agent Orange basically messed up his nervous system.
Mayo Clinic’s definition for essential tremor is a nervous system (neurological) disorder that causes involuntary and rhythmic shaking. It can affect almost any part of your body, but the trembling occurs most often in your hands — especially when you do simple tasks, such as drinking from a glass or tying shoelaces.
Essential tremor typically worsens over time and can be severe in some people. Sometimes essential tremors are confused with Parkinson’s disease. It can occur at any age but is most common in people age 40 and older.
My husband’s tremors began in his late 20s and had progressively worsened. They severely affected his life and his capabilities. Not only did they cause his hands to shake uncontrollably, both of his legs shook and his head bobbed. They were starting to affect his balance and he was starting to fall a lot. His body was in a constant state of motion and he couldn’t feed himself, shave, or even sign his name. Not to mention not being able to tie his shoes, button buttons, zip zippers, and much more.
Not only did tremors affect Bob’s physical life, they also affected him mentally. He was embarrassed to eat in public and have to be seen getting spoon fed by me. His severe tremors also caused him a lot of depression.
After years of trying various prescription drugs and having no luck, we finally were sent to see Dr. Terry Rowland, a neurologist now working at Columbia V. A. Hospital. On his first visit, Dr. Rowland brought up the possibility of Deep Brain Stimulation (DBS) surgery. Bob and I both thought it sounded like a good idea and he felt he had nothing to lose since the quality of his life had deteriorated so much. Dr. Rowland got the wheels in motion and in a couple of weeks we went to see Dr. Thorkild Norregaard, a neurosurgeon at University of Missouri Hospital.
Dr. Norregaard and his nurse Stacey were very helpful in explaining DBS. The process is three steps – the first surgery is the longest and considered the most serious. Two holes would be drilled in Bob’s brain (right and left side) and electrodes would be placed in the thalamus, deep in the brain. The bad part, he had to be awake through the whole process. But Stacey made Bob a promise.
“I’ll be there with you through the whole process. I will hold your hand. I’ll explain what’s going on and anything I can do to help you get through this procedure I will do. I will be there from start to finish.”
The second step would require opening up one of the first incisions to get the ends of the wires from the first surgery and running them under the scalp. A new incision would be made behind the ear to help guide the wires down through his neck into his chest cavity where a pacemaker-like device would be surgically implanted.
The third and simplest step is having the device turned on and programmed. This step has to be done at least 30 days after to first surgery so that the brain has time to heal. This is when you find out just how successful the surgery has been. We were told the risk for no improvement is very slight.
My husband decided to have the surgery. But he was more than a little scared and completely freaked out about having to be awake for the first surgery.
The morning finally arrived and we checked into University Medical Center around 5:30 a.m. We went up to surgery and he was taken right in and preparations started for getting him ready. At 7 a.m. they came to take him to surgery but first he had to have a CAT scan and they gave him a unit of blood platelets. He then had his head screwed to the table – literally.
The metal “halo” as it is referred to is screwed to the table and several places to the head. The official name of the halo is stereotactic frame. It holds the head still (something Bob didn’t have the ability to do) and is part of the brain imaging study. He then had his head shaved and he commented on how they kept hitting the clippers against the metal frame.
Then the really scary part for him was drilling the first hole in his skull. Even though they had topically numbed the scalp he felt the discomfort of the drilling process and hearing it only made it worse.
The images of the brain and frame are used to calculate the position of the desired brain target and guide instruments to that target with minimal trauma to the brain. Brain mapping using thin microelectrodes is then used to record brain cell activity in the region of the intended target to confirm that it is correct, or to make very fine adjustments of 2 millimeters in the intended brain target to try and find the optimal location.
He thought they were all through when the team took a short break but then learned they were only finished on one side. They still had to do all of it again on the other side.
At 12 p.m. Dr. Norregaard came out to talk to me. “We are finished and your husband is doing well. He took it like a trooper; it was quite an experience. Having your head screwed to a table for three and a half hours is challenging. The tests we did in OR were encouraging.”
After spending 24 hours in ICU Bob got to go home. He healed nicely and we waited for the two weeks to pass before his second surgery.
The second surgery was shorter and everything went well. But most joyful to Bob, he got to be asleep this time!
Exactly one month after the first surgery we went to Dr. Rowland so the device could be turned on and programmed. To say we were both nervous would be an understatement. Because to this point Bob had went through two surgeries and nothing had improved yet – even though we had been told it wouldn’t.
Bob’s body was in full motion when Dr. Rowland walked in. His head was bobbing uncontrollably, his legs were shaking and his hands and arms shook very hard. (When he is nervous his shaking is worse.) Dr. Rowland placed his programming device against the battery pack in Bob’s chest and turned it on. In a matter of minutes the device was set and just like flipping a light switch, all of Bob’s tremors stopped. It was nothing short of a miracle.
Dr. Rowland left us in the exam room for about half an hour saying he would be back to check on us.
“Walk around, get a drink, use the restroom, whatever you want,” said Rowland. “I’ll be back in a while to see if you need any adjusting before you go.”
We set there and looked at each other, hugged, cried and thanked God for this miraculous blessing. My husband was like a kid in a candy store.
“Look what I can do,” he said excitedly. “I can tie my shoes myself. Look, I can hold my hands steady and my legs aren’t shaking! I can write my name. Wow!”
Those things may seem small to some, but anyone who has suffered with severe tremors and their loved ones know what a big deal it is to be able to do these things.
Dr. Rowland did have to do some adjusting when he came back in. The left side of Bob’s face was numb, but a small adjustment remedied it. We were told he would probably have to go back in a few weeks for an adjustment, most people do. And we will have to.
But this surgery has changed my husband’s life. It has given back much of his ability to do things for himself. It makes him feel more like an equal contributor and not such a burden (even though I have never felt caring for him was a burden). In our eyes it was a miracle. And we are grateful to God and everyone involved in making this miracle happen.