Brain bleed: Local man’s recovery from brain injury may be similar to that of Sen. Tim Johnson

| Sunday, March 11, 2007

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Mary Garrigan, Journal staff

Max and Kathy Miller have a message for South Dakota’s Sen. Tim Johnson and his wife, Barbara.

Be patient, work hard and remember that a brain injury knows no schedule.

“I want him to see a picture of me and my wife, just so he knows that recovery is possible,” Miller said last week, six months after he suffered a severe brain hemorrhage which, like Johnson’s illness, required emergency neurosurgery, a medically-induced coma and months of hospitalization and rehabilitation.

Miller experienced a hemorrhagic stroke brought on by uncontrolled hypertension, not by the tangled overgrowth of blood vessels that caused Johnson’s brain hemorrhage Dec. 13.

The blood vessels in Johnson’s brain were weakened by a previously undetected congenital abnormality — an arteriovenous malformation — that caused them to grow abnormally large, weaken and rupture.

The two men had different underlying medical conditions, but the same kind of brain injury — bleeding into the brain that accumulates and compresses the surrounding brain tissue, according to Dr. Christina Cote, a physical medicine and rehabilitation specialist with Black Hills Neurology who oversaw Miller’s recovery.

Strokes come in two forms: Ischemic, which are caused when not enough blood and oxygen get to the brain; and hemorrhagic, the more rare kind that Miller and Johnson suffered, which account for just 17 percent of all strokes.

No matter what the cause of a hemorrhagic stroke though, about 25 percent of brain bleeds prove fatal within the first 24 hours, Cote said. There is a 40 percent fatality rate from the hemorrhage itself within the first month.

Both Miller, 73, and Johnson, 59, beat those early odds. And, statistically speaking, both can look forward now to better long-term recovery outcomes than ischemic stroke victims, Cote said.

Johnson left a Washington hospital in late February to enter a private rehabilitation facility at an undisclosed location. He is now described by communications director Julianne Fisher as “making good progress, but it’s a long road ahead of him.” Johnson meets with his chief of staff and other aides regularly and is “getting back into the swing of things.”

His staff won’t say where he is or how long he is expected to remain there, but his recuperation — which includes four hours a day of speech, occupational and physical therapy — is expected to take months.

All of that sounds excruciatingly familiar to the Millers.

“I knew exactly what they were going through and because of that, at first, I was probably the biggest news junkie for the story,” Kathy Miller said.

But she also understands the veil of secrecy that the senator’s family has drawn around their lives.

“I ache for her. It’s such hard work,” Miller said. “You don’t need that public scrutiny while you’re doing that. You don’t need cameras in your face asking dumb questions like ‘Is he talking?’ an hour after brain surgery. Are you kidding me? Of course he isn’t talking right after brain surgery.”

The Millers’ medical marathon began late last summer, when Miller took her husband to the emergency room after he experienced dizziness, weakness and a host of other symptoms at the end of a long day at the Central States Fair. Doctors eventually sent him home, but he was back in the hospital a week later with similar symptoms, as well as a stomach bug that left him dehydrated and weak.

On the Tuesday after Labor Day, Kathy Miller arrived at the hospital to find her husband confused and disoriented. Tests revealed he had experienced a hemorrhagic stroke caused by high blood pressure. Emergency surgery to relieve the pressure on his brain was his only chance for survival.

Max Miller has no memory of the next month or more. For some of it, he lay in a medically induced coma with a hole in his skull.

A healthy brain produces brain fluid, but when it is injured or swells, its natural drains can become blocked, sometimes permanently. For Miller, a second surgery to install a drainage shunt was needed. His brain shunt drains fluid into his abdomen, preventing fluid accumulation and pressure on his brain. The tubing, which snakes across his skull, down his neck and into his abdomen, will stay in place for the rest of his life.

Miller rallied slowly, but by Oct. 10, about five weeks after his stroke, he was ready to be moved out of acute care and into Regional Rehabilitation Institute. But even that move is lost in the fog of brain injury. “I remember being in the rehab hospital, but I don’t remember coming here,” he said.

At that point, he still required around-the-clock nursing care, was too weak to stand by himself and had lost 50 pounds.

“We basically had a bag of bones,” Kathy Miller recalls. “He was too weak to do anything.”

Michael Latour, director of RRI, explained that comatose or bed-bound patients who get no physical exercise can lose as much as 2 percent of their muscle mass per day for about 20 days, at which point the losses usually stabilize.

A facility such as Regional Rehabilitation Institute is distinguished from a nursing home in many ways, most notably by the minimum of three hours per day of rehabilitation required of all residents. RRI staffers said they have been fielding questions and inquiries from patients and the public about Johnson’s probable treatment.

Like many rehab patients, Miller developed a love-hate relationship with the therapists who retrained his body and his brain by pushing him to his limits — and just a little beyond.

Miller’s brain hemorrhage occurred in his cerebellum, an area at the back of the brain that controls balance and coordination but not language.

His stroke caused little loss of speech, but his attention span, memory and mental focus were impaired. “He’d just zone out,” Miller said of her husband, who is retired after a 25-year career with Montana Dakota Utilities as an engineer, lobbyist and manager.

After the stroke, he had to relearn tasks as basic as how to dress himself. “One of the most frustrating things for me was just getting up off the floor,” he said. “I had to relearn how to do that.”

Learning to walk again first meant parallel bars, followed by a walker, then a cane. It happened in halting steps taken half way down a hallway, then all of the way down the hallway, then down and back again.

“Up there, they celebrate all the little milestones,” Kathy Miller said of RRI.

Between 75 and 85 percent of all stroke victims regain the ability to walk, but less than 60 percent regain independence with self-care skills. Most stroke patients will require some degree of 24-hour supervision when they first return to their homes because of communication issues or impulsivity control.

After conquering his unstable gait, Miller moved on to a host of other tasks involving occupational and speech therapy.

The stroke didn’t change his outgoing, extroverted personality. Most days found him joking and flirting with his therapists. “In six months, I saw him despondent maybe two or three times,” Kathy Miller said. “But that’s always been his personality.”

Max Miller likes to say that his five-week stay in the rehab hospital seemed like it lasted “a hundred years.” In reality, he returned to his Rapid City home just in time to celebrate Thanksgiving.

That’s a longer stay than the typical patient has at RRI, Latour said. The majority of the institute’s 28 in-patient beds are occupied by patients who have suffered either a hip fracture or a stroke. Stroke patients typically average about three weeks in a rehabilitation facility, Cote said.

“It feels like old home week,” Miller said last week during a trip back to the in-patient gym and therapy areas. He underwent six half-hour sessions daily to regain his balance, stamina and mental acuity, including sessions on a colorful floor mat designed to test his coordination and on a Dynavision board, which uses patterns of blinking red lights to improve reaction time and check for visual field blindness.

“It’s been a marathon,” Kathy Miller said of her husband’s road to recovery.

He still has some mild memory and cognitive deficits, but this week, he did something that not many stroke victims ever do: regain the right to get behind the wheel again.

He can drive a car, under supervision for a few weeks, and then, hopefully, independently.

“Only a small percentage get back to driving,” Cote said. “That shows a very high level of functioning, because that’s a lot of complex thinking and behavior to master.”

Miller, a Republican, jokes that he is of a “different persuasion” than Johnson, a Democratic senator. But he likes Johnson’s moderate political positions, even if he might not have voted him into office.

“He’s a good man and a good senator,” Miller said.

One, Miller said, he hopes to see back at work in Washington. Whenever he’s ready.

Frequently asked questions about AVMs

-How common are brain AVMs?

Arteriovenous malformations in the brain occur in less than 1 percent of the general population. It is estimated that about one in every 200 to 500 people may have an AVM. AVMs are more common in males than females.

-Why do brain AVMs occur?

No one knows. Brain AVMs are usually congenital, meaning someone is born with one. However, they usually are not hereditary.

-What are the symptoms of a brain AVM?

Symptoms may vary with location. More than

50 percent of patients with an AVM have intracranial hemorrhage. Twenty percent to 25 percent may have seizures of some type. Patients may have localized pain in the head due to increased blood flow around an AVM. Fifteen percent may have difficulty with movement, speech and vision.

-What causes brain AVMs to bleed?

A brain AVM contains abnormal and, “weakened” blood vessels.

-What are the chances of a brain AVM bleeding?

There is a 1 percent to 3 percent chance per year of a brain AVM bleeding. During a 15-year period, there is a 25 percent total chance of an AVM bleeding into the brain, causing brain damage and stroke. Over a lifetime, there is a 40 percent to 50 percent chance of an AVM bleeding. With each bleed, there is a 10 percent to 15 percent risk of death and a 20 percent to 30 percent chance of permanent brain damage.

Information courtesy of the American Stroke Association

Contact Mary Garrigan at 394-8410 or mary.garrigan@rapidcityjournal.com