For this Minnesota Health patient, recovery was a family affair
When 42-year-old TonyJoe (TJ) Wenker was 15, he had his first grand mal seizure. The cause was a massive AVM (arteriovenous malformation) that had been in his brain since birth.
TJ was a smart, athletic high school student who wanted to be a priest. The seizure would change his life significantly, as it was the first of many caused by the AVM. Over the years, medications and a vagus nerve stimulator would help control his seizures. Regardless, they kept occurring.
That didn’t stop him from attending St. John’s University in Collegeville, MN, for a year and then transferring to Inver Hills Community College, where he rose to state-wide leadership in small college student government. “TJ traveled to several campuses, dealing with student issues,” said his father, Joe Wenker. “He enjoyed it a lot.”
In 2012, the malformation leaked and blood seeped into the fluid-filled ventricles of his brain; however, his body tolerated the seepage and absorbed the blood. The AVM would leak once again with similar results. Neither time would his care team recommend surgically removing the AVM because of its size.
Moved to Minnesota Health
When TJ had his third AVM bleed, there were no beds available at the hospital he’d been taken to before or at any other hospital in St. Paul, MN, according to his sister, Andrea. “The U of M had a bed open and Mom pushed for him to be moved there,” she said. TJ’s University of Minnesota Medical Center (UMMC) care team would be led by Andrew Grande, MD, and Ramu Tummala, MD.
“When Dr. Grande stopped by TJ’s hospital room, they started talking about the AVM and he told TJ, ‘Oh yeah, we can fix that…we can remove it,’” said Joe. “That set both Andrea and me up in our chairs. We’d been hearing for 20 years that it couldn’t be removed.”
What is an AVM? According to the American Stroke Association, arteries normally carry blood containing oxygen from the heart to the brain, and veins carry blood with less oxygen away from the brain and back to the heart. When an AVM occurs, a tangle of blood vessels in the brain or on its surface bypasses normal brain tissue and directly diverts blood from the arteries (which can handle high pressure) to the veins (which can’t).It’s not uncommon for an AVM to rupture.
Another rupture sent TJ back to UMMC. “This time,” said Grande, “the blood wasn’t being absorbed and we needed to insert a ventricular catheter to remove it.” TJ resisted having the surgery. Eventually, he left the decision in Andrea’s hands as his designated healthcare proxy. With support from the family, she decided that TJ should undergo the procedure.
A lifetime of seizures and the series of AVM leaks had taken a tremendous toll on TJ. But the real battle came in 2013 when the AVM ruptured and it became clear that it had to be removed. It was the biggest AVM that Grande and Tummala had ever faced. “The size of it made it really tough,” said Grande. The decisions the neurosurgical team had to make were daunting. For instance, the malformation needed to be embolized using a minimally invasive procedure that would shut off the blood supply to numerous vessels in the AVM, preparing it for removal.
Ordinarily, Grande and Tummala would do these embolizations over several weeks to prepare for the kind of surgery that TJ needed. The amount of bleeding exacerbated TJ’s situation and the embolizations would have to be done over a series of days instead.
20+ hours of surgery
Then, TJ underwent more than 20 hours of surgery performed by a team led by Tummala and Grande. He lost the equivalent of his entire body volume of blood during the surgery and was comatose for several weeks afterward. In addition to losing about 100 pounds due to inactivity, TJ would end up with gastrointestinal track problems. He also developed hydrocephalus and would require an additional procedure to insert a permanent ventricular catheter that would remove the accumulating fluid in his brain.
When TJ left UMMC, he would be seen at many other care facilities, including Sister Kenny at United Hospital in St. Paul, MN; Courage Kenny in Golden Valley, MN; Augustana Care Facility, Minneapolis; and finally, Dungarvin Residential Services, where he currently resides. In addition, Grande referred TJ to Diane M. Chappuis, MD, of Physical Medicine & Rehabilitation at Allina Health, who continues to work with him.
“I was the main pray-er”
His family took over TJ’s care. His mother, Danielle, led the team, which primarily included Joe, Andrea, and his younger brother, Alfonso. “For the first couple of months,” Danielle said, “I was the main ‘pray-er.’ My role was to sit and pray and be there for TJ. I also had to figure out all the paperwork and bills. I learned to speak up really fast.”
Advocacy came naturally to Danielle as she had played that role for her grandmother several years before. “I knew a little bit,” she said. “When I didn’t know something, I just kept calling people and asking questions.” One thing took Danielle by surprise. “I was amazed by the support and encouragement provided by Doctors Grande and Tummala and the U of M care team,” she said. “They were always there for us.”
“We’ve been incredibly blessed by the people at the U and the care that TJ has gotten there,” added Joe.
At first, the entire family – including TJ, when possible – was heavily involved in every decision – from making and taking him to appointments, to finding him a safe place to live, to providing a social life for him. “We accepted that was what we had to do,” said Joe. “It was really hard…I won’t minimize it at all. Your life basically stops. The other role for me was to make sure the family – especially Danielle – was doing okay. Everyone wants to show up and do things, but they need a little care and nurturing as they’re walking through that process.”
It took Danielle a while to learn how important that was. “If you pray, pray. If you don’t, do whatever helps you recover your strength,” she said. “It’s really important to take time for yourself…even if it’s only five or ten minutes.”
The silver lining
As with many difficult situations, there was a silver lining. The entire family grew closer. “One of the joys was getting to know Alfonso and Andrea again,” said TJ. “Before all this happened, I didn’t really know them…I kind of did my own thing.” Being 12 years older than Alfonso and 4 years older than Andrea explains why TJ may not have felt close to his siblings prior to the surgery.
“Our family bonds have strengthened because of TJ’s care process,” said Alfonso. His job at the Minnesota Council on Foundations gave him the flexibility to help when needed. “I was great at task-oriented things,” he said. “I would pick up food and bring it to the hospital waiting room, update the Caring Bridge site, write a letter, or plan an event to help raise money for TJ.
“One of the things I learned is that local government isn’t interested in complete recovery,” Alfonso continued. “They fund you to the point at which you’re okay when you’re on your own. We had to raise $20,000 for 18 months of additional occupational and physical therapy for TJ.”
Foundation of faith
Andrea, who teaches English as a Second Language to elementary school kids at a charter school in St. Paul, gives a lot of credit to the family’s faith for helping them get through TJ’s surgery and ongoing recovery. “There were times when we would just get down on our knees and pray,” she said. “We’re also fortunate to have an extended family and friends who have been there every step of the way.”
TJ agrees. “I saw someone recently who doesn’t have that family support,” he said. “They’re in bed right now because no one is around to do anything for them. That’s how I would have been if I didn’t have so many people around.”
TJ’s recovery process evokes different responses from his family. “The recovery went much quicker than I anticipated,” said Danielle. “Even though he was very sick, had every kind of infection you could imagine, and was more in the hospital than not for three years, his physical and mental recovery just moved along. It was kind of miraculous to me.”
Alfonso has a different perspective. “I didn’t realize that the result of the bleed, pressure, and subsequent surgery would cause brain damage and that TJ would need the same kind of care as a stroke survivor,” he noted. “Or that the journey would be so long. I didn’t know we’d have to help him learn to walk or to talk. I didn’t fully appreciate what all this meant.”
Throughout his recovery, TJ has shown just how resilient he is. “Every time I thought there was a challenge, I found a way to overcome it,” he said. “That’s why I was able to come so far.” Even Grande is impressed. “The biggest thing is TJ’s own courage and commitment to life and to getting better,” he said. “He’s a great guy with a wonderful attitude. He’s smiled through this whole thing.”
Everyone needed support
While the family came together to help TJ, they initially resisted getting help for themselves. “And then when TJ was at an appointment with Dr. Chappuis, Heather Odell, who is a stroke rehab care coordinator, told us about YESS [Young Enthusiastic Stroke Survivors], a support group that she had started for stroke survivors and caregivers,” said Andrea. “My first reaction was, ‘We don’t need a support group.’” And then she laughed and added, “Oh yes, we do!” The family usually goes as a group to the monthly YESS meetings.
“I find it helpful in two ways: I can see other family members who are in the same place…I don’t have to explain,” said Andrea. “It is also good for TJ to be in a place where he feels comfortable enough to open up and share.”
Despite all his progress, TJ is essentially different than he was before. “You need to accept what is now the new you,” TJ said. “It was hard at first.” Alfonso agreed, adding, “I had to let go of who he was before. It’s important to accept what is right now…doing that is hard work, but it relieves stress.”
Since his major surgery, TJ has recovered enough to be able to walk on his own using a leg brace and cane. He speaks slowly and deliberately because he suffers from aphasia. Talking wears him out quickly. For someone who loved to read and in high school could precisely recall the contents of a page after just scanning it, TJ now reads at a fifth or sixth grade level. He follows along with audio books provided by the National Library Service for the Blind and often goes to the local library with Andrea.
“It takes a long time for people to get better after a stroke or traumatic brain injury,” Joe pointed out. “We’re used to things happening quickly, but the brain takes a long time to heal. It’s the toughest thing to deal with because you can’t always see what’s wrong.”
One of the biggest lessons TJ learned throughout all of this is that no man is an island. “I couldn’t do this on my own,” he said. “I would advise other patients to rely on their support systems and to not be afraid to ask for and accept help.” To the families of patients, he advises: “Give them what they need…don’t stop. And remember that it takes time.”