After a day at Wadsworth High School doing what he loves — working on cars in the auto tech program — Adam Shed makes his way out of the door for a job interview.
Whether he gets the job is beside the point. The fact that he can go to school and even consider getting a job is worth more than anything to him.
Starting at age 14, Shed suffered from headaches so severe that he needed to be home-schooled for two years. He certainly couldn't work. He never went out with friends. And his weight climbed to 395 pounds.
"The only relief I had was sleeping, which caused me to gain weight," says Shed. "I wasn't doing anything besides eating and sleeping."
His mom, Lori, took him to multiple doctors in attempt to find him some relief.
"They prescribed pill after pill," Shed says. "I'd try them for a few days, but once I realized they weren't working, I'd stop."
Doctors kept telling Shed his pain and suffering were a product of migraines. And he did suffer immensely.
"The best way I could describe them is the sides of my head were put into a vice, and it was just constantly being squeezed," says Shed, a junior. "On the top, it felt like a railroad spike was being driven down. And it was constant."
Finally, his neurologist referred him to Dr. Samer Narouze, chairman of the Center for Pain Medicine at Western Reserve Hospital.
Narouze discovered that Shed wasn't experiencing migraines at all, but had a swollen occipital nerve. The occipital nerves wind their way through the spine and neck muscles at the back of the head and into the scalp.
In a procedure developed within the past several years, doctors use ultrasound to scan the back of the head.
"We can see where the nerve is," explains Narouze. "In his situation, it was really swollen."
Safe and painless, the ultrasound — just like what is used to look at babies in the womb — uses sound waves to image the nerves and muscles inside the neck area, which would not show up on X-rays. And, despite the fact that Shed had undergone many more extremely expensive and extensive tests through the years such as an MRI, it was the ultrasound that allowed Narouze to provide an accurate diagnosis.
Once he made the diagnosis, Narouze also used the ultrasound to guide an occipital nerve block, which requires injecting a combination of local anesthetic and steroid around the nerve. He gave Shed two injections in the top neck area, behind the ears.
Shed got almost immediate relief from the shots, but it wore off in three to four weeks.
Since he asked for the shots more often, Narouze removed the steroid component of the injection and began to give Shed just numbing medicine each time — and that has worked too.
The shots are cost effective and mean that Shed doesn't have to take medicine for the pain — which can be addictive and have side effects such as severe dizziness.
"What happens with many patients [with chronic headaches] is that nothing works for them," Narouze says. "So they find a physician that will put them on an opioid."
In fact, Narouze's work in this area inspired him to found the American Interventional Headache Society to work with patients, like Shed, who suffer from chronic headaches or neck pain and don't respond to traditional treatment.
With relief from his headaches, Shed is a new person.
He's lost 115 pounds so far just by getting his life back.
"Now, I'm able to go out and do stuff," he says. "I see movies or go for walks or play football with friends. Mostly, I like working on my car."
It's a change his doctor has noticed, too.
"He's a different patient," says Narouze. "He's smiling now."
Straight Talk
One surgeon told him back surgery would take 10 hours. But his cardiologist felt that would be too risky since Courser had already suffered two minor heart attacks and undergone open heart surgery to implant stents.
So, he searched online for another group of physicians. But after an MRI, their prognosis wasn't good: "We can't do anything for you," they told him, "but if you don't get something done, you could be paralyzed."
They referred him to Dr. Louis Keppler, co-director of the Spine and Orthopedic Institute at St. Vincent Charity Medical Center.
While in the waiting room with his wife, Nancy, Courser knew that he was in the right place to get help. "Patients were saying great things," Courser says. "One couple came all the way from Toledo."
At 68, Courser had already undergone a laminectomy in 2007, spinal surgery that creates space by removing the back part of the vertebra covering the spinal canal. It relieved his pain for a few years, but then the top of his spine collapsed over the previous spinal fusion — making it so he couldn't stand straight, a condition called kyphosis — and causing severe pain.
Keppler says Courser is courageous for deciding to go ahead with the surgery last April.
But Courser says the thought of possible paralysis down the road made the decision for surgery easy. And it would take just six hours, an acceptable amount of time in the eyes of his cardiologist.
"I value the ability to move around and interact, rather than be stuck in a bed not doing anything or in a wheelchair," Courser says.
Keppler performed what's called a spinal osteotomy — removing part of Courser's spine bone to correct the deformity and allow him to stand upright again.
"It was difficult because of his previous surgery there were all sorts of scars around the nerves, so we had to separate the nerves from the scars and then remove the bone, so that we could create a hinge to straighten him out," explains Keppler.
Keppler placed rods and screws into the bones to hold them in place. The style of rod and screw had been developed at St. Vincent Charity in the mid-1980s by Keppler's mentor Dr. Art Steffee, who is now retired.
"Dr. Art Steffee basically changed the way spinal surgery was done throughout the world," says Keppler. "He innovated the spinal hardware that we use to achieve this."
Prior to Steffee's invention, Keppler says a condition such as Courser's could not have been fixed, especially at his age.
"But 68 is young now," Keppler says. "We're doing spinal reconstruction on people in their 80s because they want to stay active."
Courser is grateful that Keppler performed his surgery.
"As soon as I woke up from the anesthesia, the pain in my legs were gone," he says.
Courser spent about a week in the hospital, followed by two weeks in a rehabilitation facility to help him slowly gain strength in his legs and arms so he doesn't hurt his back muscles.
Now, he takes just acetaminophen to sleep — but that helps with his general arthritis pain as well.
"[Keppler] cautioned me it would take a full year to heal, even though it's going good," Courser says. "I wear a brace now only when I'm traveling or walking a lot. The best thing you can do is walk, so I do a lot of walking. What helped the most is family, friends and church. We had a lot of people praying for us."
Planning Ahead
That dramatic imbalance was a real eye-opener, she says. Diagnosed with younger onset Alzheimer's at 62, she didn't want to burden her three adult daughters, extended family or friends with any aspect of her care — even a quick trip to the grocery store. So when a social worker asked her about who could do things for her, Uronis was certain that her husband of 44 years, Al, could be her exclusive caregiver as the disease worsened.
But seeing it in front of her stirred something in her memory: her dad sacrificing his own health to care for her mother with Alzheimer's. In that moment, she realized that she would need people other than Al to help out.
The use of the circles is part of an innovative program for Alzheimer's patients and their caregivers created at the Benjamin Rose Institute on Aging called Share: Support, Health, Activities, Research and Education.
Started as a longitudinal research study in 1997, the Share program helps early-onset Alzheimer's patients and caregivers develop a care plan while the patient still has a voice.
"We've learned that people with dementia have very strong preferences," says Carol Whitlatch, assistant director of research at Benjamin Rose and the principal investigator of the study. "They're able to say what those preferences are, and they're valid. They answer the same question the same way after the course of a week."
At the same time, Whitlatch says, the research shows caregivers don't always know what their loved ones would want.
"We also learned that a lot of our families want to talk more about their preferences and how things will be in the future," Whitlatch says.
It's a difficult conversation that a Share counselor facilitates in a safe environment over multiple meetings. For the circle activity, the counselor talks separately with the patient and the caregiver, asking them to put tasks into a circle on a magnet board and assigning them to the caregiver, friends and family, or paid help. Benjamin Rose is developing the circle exercise for the iPad, where the person can just drag the task to each circle.
For Joan and Al, who learned about the Share program through the Akron Alzheimer's Association, the counselor came to their home.
"What I found so important about the Share program is that I learned things that I never would have thought to even think about," Joan says. "It really is sharing between the caregiver and the individual with the disease. It's a wonderful program."
For example, Al recognized he wouldn't be able to handle all of Joan's care and included other people in his circles, while Joan assigned almost everything to Al.
Since then, they've shared their care plan with their daughters.
"They were even willing to do more than the places we put them in," says Joan.
Her disease is progressing slowly. Now 66, She still drives, relying on her GPS for directions she could easily forget. She is active in the Cleveland Chapter of the Alzheimer's Association, after having moved from Summit County, and serves on the association's national board as a patient advocate.
And she is passionate about it.
"I've seen so much injustice, disrespect, humiliation and stigma surrounding this disease that it's really, really heartbreaking," Joan says. "We need to stop this stigma because we are still human. We're still able to contribute until we have no voice any longer. I feel I am the voice of those of us with the disease."
Beating the Odds
But he doesn't remember anything about how he played that day with his senior league. He just knows the story he's been told by some of his buddies.
After the round, he turned in his scorecard and started to walk out of the pro shop when he dropped to the ground from sudden cardiac arrest.
One friend started CPR immediately, while another dialed 911.
Later his son would tell him the paramedics "paddled" him — using a defibrillator to start his heart — four times.
"The doctor told him, 'He's got about a 15 percent chance of making it, and even if he makes it, he might never talk again. He'll be in a nursing home,' " Hull says.
The ambulance took him to TriPoint Medical Center, where Dr. Robert Goldstein, director of cardiac electrophysiology for Lake Health took over his case.
Goldstein says Hull's heart stopped because of an arrhythmia, an out-of-sync rhythm that doesn't let a weak heart muscle pump blood through it like a normal heart would.
The pumping action — the amount of blood that leaves the heart compared to what comes into it — is known as the ejection fraction. A normal ejection fraction is 50 to 60, says Goldstein. Hull's was in the 20s.
"When the heart is weak, it can predispose one to having lethal heart rhythms," Goldstein explains.
He decided to do surgery, placing a device into Hull's heart known as an implantable cardioverter-defibrillator. The procedure takes just about an hour, with the surgeon using X-ray guidance to get the wires to the heart.
The device works in two different ways to keep the heart going.
First, it shocks the heart immediately from inside the body to restart the heart, says Goldstein. Secondly, it provides cardiac resynchronization therapy in which wires go into the heart ventricles to help them stay in rhythm.
"That can actually help improve heart function," he adds.
Goldstein says implanting a device should be standard of care for any patient with a weak heart muscle.
But often, even cardiologists don't recognize the preventive value of a patient receiving the device.
"The importance of anyone with a weak heart having such a device is critical," says Goldstein.
While 80 percent will never have the device go off, he says, it can save that one person in five when it does.
"They'll have that insurance policy," says Goldstein. "That's enough to warrant implanting it in all those patients with weak hearts."
Hull doesn't remember much about his stay at the hospital, but he does recall waking up on his birthday, June 10, to a balloon from a friend and the device in his chest.
The device has gone off four times since receiving it. In all likelihood, his heart would have stopped again.
One time, he was shopping when it went off. He left his cart and went home.
The device, which lasts between five and 10 years before needing replaced, transmits signals back to the hospital, so a nurse can tell what happened.
"I can feel it from my toes to the top of my head," Hull says. "It's real quick, but it definitely gets your
attention."
Hull had the opportunity to go back to the hospital with a large tray of cookies, just to make sure the nursing team and staff knew how grateful he was for their care.
Since being released from the hospital, he's even found a new girlfriend and played a little golf.
Although he doesn't feel perfect yet, he's hoping his health will be up to par soon.
"Some people take two years to come back from heart surgery," says Hull. "I played golf the other day, but we didn't keep score. I'm not practicing as regularly, but I'm still playing OK. I can still hit the ball fairly decently."
