Sloan Halliwell likes to give Mom’s “owies” little butterfly kisses to help make them better.
The two-and-a-half-year-old doesn’t know that the incisions on her mother, Hayley McDougall’s head are from an experimental surgery, the only one done in North America, designed to place electrical stimulation at the temples to relieve the severe pain that has not stopped in 10 years.
“Her Dad helps her scrub her hands and then she touches my head and kisses it and says, ‘Hair grow back.’” said McDougall.
“She knows Mom hurts but that it should make me feel better later on. We prepared her for it. I’ve been prepared for the surgery since last year when we were at the Mayo Clinic and it was suggested as a possibility for me. All my hopes and dreams were for this and everything was on hold until it could be done.”
After MSP finally agreed to pay for the surgery, McDougall, her husband, Mike Halliwell, Sloan, and mother, Kathy Goldie, had two weeks until the surgery was scheduled. With help from community fundraising, their travel and accommodation expenses were met and they headed to the Mayo Clinic in Phoenix, Arizona for pre-operative consultation.
“Some people warned me of the risks but I didn’t see the risks. I couldn’t go on living the way I was. I know my family worried about the risks and I am well taken care of because my family thinks of everything. I am looking forward to the surgery pain being over so I can let the device do its job,” said McDougall.
The surgery was planned to add additional wires to the battery in McDougall’s abdomen which supply two electrical stimulation devices at the back of her head. One wire on the right front of her body and another on the right back lead up the neck to where there is one device at each temple, the point of the unrelenting, excruciating pain that had left McDougall confined to bed most days.
“I can feel the wires, kind of like a tendon,” she said.
“The two days before the operation, the doctors and the implant technician literally drew on my head to get the best placement. I was awake for the first hour of the surgery so the device could be turned on and I could tell if it was in the right place. When I felt the stimulation on my left temple, I started to cry. It was right where it needed to be. The right side was harder because the placement is so precise. At one point, it made my jaw lock. There was one doctor on the medical team of 15 whose only job was to check my face to make sure that nothing was being stimulated inappropriately.”
After a long period of stimulation, six months to a year, the nerves will be retrained not to send the messages of pain to the brain and McDougall should feel some relief in the level of pain. That doesn’t mean the pain, which has no known cause, is gone, just that it cannot be felt so acutely.
“In the surgeon’s eyes and in my eyes, if the pain comes down from a 10/10 to a nine or eight out of 10, if I can have one more day out of bed a week, or a few more hours out of bed each day, the surgery will be a success,” said McDougall.
The surgery took place Oct. 4, with McDougall under anesthetic for the last five hours of the six-hour surgery which was filmed to be used as education for other similar surgeries. She was sent home four days later and is still recovering. She will have follow-up every six months at the Mayo Clinic.
There are still risks. The battery is now at capacity and it is not known how long it will last. The wires or the stimulation devices could shift position from normal body movement and that would be cause for emergency surgery.
“It seems to be taking a long time to recover from the surgery pain but I’m slowly getting out of bed for a little longer each day. So far, most of the improvement has been in the post-surgery pain. The head pain is still there like a dagger in each side of my temples and I am very aware of the electric shock,” said McDougall, who is delighted when she is able to go out and watch her daughter’s dance lessons for a few minutes or get up to join the family for dinner.
“I knew the pain wasn’t going to stop right away but now I know the option that was available for me to get help has been used. We have achieved it. I can look for improvement. And I want my suffering to have been some help to others who have this or any kind of pain, particularly things that can’t be diagnosed or show up on a test. It is important to try all the options and keep hoping.”
For now, she’s grateful for the support of her family — sister Jade Goldie is staying with her and her husband as a nanny and caregiver — the community which helped make it possible to go to Arizona for the operation and for the hope of reduced pain. And for those butterfly kisses.