While Chiari malformation is not life-threatening, it does threaten the quality of life of those who suffer from it. The following patient testimonials illustrate that the team of medical experts at The Wisconsin Chiari Center are dedicated to understanding and providing the best treatment for Chiari malformation.
For the first time...his head didn't hurt
When Spencer started experiencing headaches during his senior year of high school, he treated them with over-the-counter medications. After a couple of weeks with marginal relief, it became apparent something was not right.
After his doctor out ruled a sinus infection, he ordered an MRI. The MRI showed Spencer had a small, but apparent, Chiari Malformation.
“We were relieved it was not a tumor or aneurysm,” says Staci Miller, Spencer’s mother. A subsequent appointment with a Neurologist confirmed the Chiari, but he didn’t believe the headaches were caused by it. It was too small and didn’t meet the guidelines.
Witnessing the pain Spencer had been enduring over a month now, his parents ordered a surgical consult. The surgeon agreed with the Neurologist. The Chiari wasn’t the cause of Spencer’s headaches. The Millers were devastated.
Over the next several weeks, Spencer tried multiple medications, even narcotics. Nothing worked and he was feeling worse.
“We see a Neurosurgeon at Cleveland Clinic for another consult and hear the same story, it’s a headache,” says Staci. “Upon returning to Grand Rapids [Michigan] we enrolled Spencer into pain management to try and get some relief from his headache and again nothing helped.”
Spencer had a bright future ahead of him. He was top of his class, involved in sports, and worked part time, but his headaches were affecting his quality of life. He has now missed over 60 days of school and loses his part time job. He manages to graduate from high school with honors and even wins a Technology Award.
“He is working so hard to push past the pain in his head,” says Staci. “However, college is looming and I fear that it may be put on hold indefinitely.”
Staci renewed her determination to get him surgery, knowing in her heart this is right. When the fourth Neurosurgeon’s office called to cancel Spencer’s appointment because his case is too conservative, Staci mentally broke down.
“My husband set me down and said, ‘in a day you’ll pull yourself together, you’ll go back through your research and you will find a way,’” says Staci.
He was right. The Miller’s hero was discovered in Dr. Dan Heffez, Neurosurgeon, who was more than 275 miles away at the Wisconsin Chiari Center at Columbia-St. Mary’s in Milwaukee.
“I can’t describe the emotions I felt when Dr. Heffez said he’d perform the surgery, but I looked over at my son and I watched his eyes well up with tears of relief,” says Staci. “We know it wasn’t not a promise that his headache will go away, but Dr. Heffez was willing to try and give him a chance to be well again, normal.”
The surgery went as planned. Shortly afterward as Spencer was recovering in the ICU, he quietly began to cry. “I hit mother panic mode and asked him what’s wrong,” says Staci. “He looked at me with tears running down his face and said ‘nothing.’” For the first time in 13 months his head did not hurt. They both cried with joy.
It has been over a year since Spencer’s surgery and he is doing well, even completing a 5K race this past October.
A year ago, the Millers would have never thought this was possible. They are forever grateful to Dr. Heffez and the staff at Columbia St. Mary’s for saving their son.
A New Lease on Life
After nearly 10 years of chronic headaches and other symptoms, receiving the diagnosis of Chiari Malformation was comforting and scary at the same time. Although I finally had a reason for my symptoms, the thought of possibly needing brain surgery was a bit overwhelming.
Following my diagnosis, I spent a great deal of time researching the condition, as well as finding doctors who specialize in the treatment. My research led me to Dr. Heffez. And, although I don't live in Wisconsin, the inconvenience of the travel was minor in comparison to having the surgery done correctly the first time.
After my initial consultation with Dr. Heffez, I knew he was the one I wanted to operate on me. He is extremely knowledgeable about Chiari, and his bedside manner is wonderful.
It's now been seven weeks since my surgery, and I feel like I have my life back. I am no longer in pain, and I no longer depend on any pain medication to get me through my day. I am able to actually enjoy life again, and it's wonderful!
I will always have a special place in my heart for Dr. Heffez and all the staff at Columbia St. Mary's. My family and I were treated with respect throughout the entire process, and everyone was sincerely concerned about my care and well-being. The hospital was clean and comfortable, the nurses were wonderful, and the beautiful lake views were an added bonus.
I am truly thankful for Dr. Heffez for giving me a new lease on life!
My Life Back
2009 was the first time I heard the words Chiari Malformation. At that
time, I was told the extreme pain and pressure I felt in my head were
severe migraines. I was assured they had nothing to do with Chiari
I went for second and third opinions from top notch hospitals throughout Minnesota, only to hear again and again that I was simply suffering from migraines, and that Chiari wouldn’t cause the pain I was experiencing. I even had a neurologist correct me when I told him I had pressure in my head. “No, you have a headache,” he said.
I spent years seeing a neurologist who was treating my symptoms as migraines. I was on many medications – regular infusions of Botox – as well regular trips to the ER, MRIs every year and a couple of Radiofrequency Ablations. Nothing would take away the pain. I was told that if I felt 50 percent better than when I was first treated I would be considered a success. I would just have to learn to live life with the pain.
By 2014, I knew I couldn’t live like this. My health had declined to the point that it was difficult to function. I felt fatigued all the time. I lost strength in my fingers, my legs were weak, my arms hurt, the pressure in my head was worse, and I was sensitive to light and sound. I was sleeping my life away because I had so much pain.
I finally googled Chiari centers and that’s when I found Dr. Heffez. I will never forget my first appointment with Dr. Heffez. It was the first time I had a doctor believe what I was saying. He told me my pain – all my symptoms, in fact – was caused by Chiari Malformation. I left his office and cried. I knew at that moment my life was going to change.
In January 2015, I had my Chiari Decompression done by Dr. Heffez. I am writing this 10 weeks after surgery and my life has changed for the best. I no longer suffer from debilitating pain. My son, who had always seen me as sick, now calls me “the new mom” because I can do things with him. I laugh and smile. My daughter and husband call me the “old mom,” as they say I have returned to the outgoing cheerful person I once was.
To this day, I still get tearful when I think about Dr. Heffez. I feel a thank you just isn’t enough. Because of him, I have my life back. I will forever be grateful to Dr. Heffez.
Dr. Heffez listens to his patients and explains things in a way that’s easy to understand. He is a down-to-earth doctor who cares about the health of his patients and making a difference. Only if more doctors could be like Dr. Heffez, this world would be a better place for Chiari sufferers.
I can’t say thank you enough to Dr. Heffez and his wonderful team for giving me my life back. Thank you for being an outstanding doctor. I would recommend anyone to The Wisconsin Chiari Center.
A Letter of Thanks
Dear Dr. Heffez, Surgical Staff, and Hospital Staff of Columbia St.
I wish to extend the warmest thanks for the care I received from everyone involved in my diagnosis, surgery and recovery this past April 21, 2014. The surgery has changed my life in so many ways.
Prior to the procedure, I studied it in-depth, researching how the procedure was performed and reading all I could about others results. Three things that long term results seemed to depend on stood out:
- The skill of the surgeon. Dr. Heffez and his team are exceptional. The nursing staff, from pre-op to the student nurses, was so attentive and kind it felt as if I was the only patient they were attending to. Everyone involved was top notch and I thank them all from the bottom of my heart!
- The personal physiology of the individual – no two people are alike, so no two outcomes are alike. This must be factored in into any research and outcomes you may encounter if gathering data to assist you in making your decision.
- And, personal responsibility during recovery. How willing a patient is to follow the directives of their doctor will affect the long-term results. The most skilled work can be undone if the patient fails to listen and cooperate with healing directives. I tried my best to follow these religiously, even setting an alarm to ensure I rested at regular intervals the first few weeks home: no heavy lifting, etc. I wanted to ensure all the work invested in me had the best chance to succeed.
I feel that my personal experience attests to the skill of everyone involved in my Chiari surgical journey.
From the day of the initial consult until today, I have encountered the highest professionalism tempered with a real concern for my wellbeing.
The information the consult provided allowed me to make an informed decision on whether or not to proceed. I understood fully that there is no cure for this condition but that it could improve the quality of my life.
And for me, the end result has been little short of miraculous! For 16 years, I had been treated for fibromyalgia and each year I had lost ground, experiencing more and more pain, which had become debilitating. Pain held me hostage all day long, every day. There was no escaping it even with medication. Medication lessened it, but I could not escape it. I also suffered from poor balance all my life as well as frequent migraines since my teenage years.
Upon awakening after surgery, I had none of the “usual” body pain that I'd experienced for so many years. Yes, there was pain from the actual surgery, but my body pain was gone! It has not returned! I can sit without pain. I can write and hold a pen again without pain. I can play the piano again, something I'd not been able to do in about three years. The list of my “small” improvements could go on and on. I have not enough words to describe how good it feels to be “me” again!
A week after surgery, I found my balance was vastly improved. I could walk toe-to-toe and stand on my right foot without falling over. I could not do this prior to surgery, and had never been able to do this in my life. It has become my new "party trick," as in, “Hey, wanna see what I can do?” It still amazes me every time I try it!
Another amazing difference is in the migraines. I have had a couple in the past six months. The difference is how the pain affects me. Since I was 14, every migraine has not only had skull pain, but my right eye would feel as if it were being compressed and would burst. Now, there is no pain at all in the eye, which has made the migraine seem so much easier to endure. I still have pain in the areas around the right eye, but that blinding pain from the past is gone.
I'm still coping with other “mileage” complaints, conditions that are in no way connected to having a Chiari. That's the joy of living long enough to accumulate some mileage. But, not having to deal with the daily “grit your teeth and keep going” pain that had been my world has been amazing. My life is mine again.
So, if I could sum up my Chiari experience, I'd say...due to Dr. Heffez and every other individual involved, you all gave me back my life! For me, you have given me a gift no words can fully express. Thank you, thank you, thank you!
Marion K. Smith
Donna Gervase's Story
During the past two years I was experiencing pain and increased discomfort in my feet, legs and back. I had been to several doctors and told them I felt two different types of pain. The MRIs and other tests showed there were two separate problems. The doctors I saw informed me there was no way both surgeries could be done at the same time. I was determined to find a doctor who could address both issues.
I began researching the Internet regarding my condition. It soon became obvious to me that I needed to consult with a Chiari clinic. After reviewing the credentials and resources available to me, I scheduled an appointment with Dr. Heffez at the Wisconsin Chiari Center in Milwaukee. He confirmed the diagnosis of congenital tethered spinal cord and an old fracture at L5 that did not heal correctly. He determined he could repair the damage with one surgery, not two separate surgeries as previously stated by doctors.
I am happy to say that one year after my surgery I am doing well. I have no limitations on my activities, which include playing golf, gardening, exercising and shopping. My back pain has been alleviated and my feet and legs are much improved. I would honestly say that I am capable of doing 90 percent of what I did 20 years ago. Did I mention I am 71 years young? Due to the brilliance and dedication of Dr. Heffez and his caring staff I now have a bright future to look forward to. I will be eternally grateful to him and his wonderful staff for their concern and expertise while in their care.
Andrew Green’s Story
For Andrew Green, it all started about four years ago with headaches.
At first he didn’t think too much of them. But as they persisted, became more frequent and increasing intense, Andrew became worried. Next came the change in his blood pressure, which skyrocketed unexpectedly. Doctors thought both developments were stress related and treated them as such. But when the chronic hiccups and cough emerged, doctors were stumped.
“I’d wake up in the middle of the night having a hiccup attack. They got to a point where I almost couldn’t breathe,” says the 28-year-old Miami native. “I also had probably the worst chronic cough you could ever imagine. It was also unexplained. There was no infection, I had X-rays done of my chest and nothing showed up. But I always had this cough.”
For three years, Andrew was in and out of doctor’s offices, trying in vain to treat each new symptom as it presented. Nothing worked. Meanwhile, the symptoms – ringing in his ears, imbalance, hearing loss – kept piling up. At his worst, Andrew says he had 23 different symptoms.
“I felt like I was dying,” he says. “I didn’t know what was happening to me.”
Finally, in April 2012, he visited a cardiologist who performed an MRI and discovered the chiari malformation. The two neurologists and two neurosurgeons Andrew was then referred to, however, either didn’t see the malformation or didn’t believe it to be the underlying issue.
Thankfully, his cardiologist did believe the chiari malformation was the cause of all of Andrew’s issues and helped him seek out an expert. As they took to the Internet, the Wisconsin Chiari Center was the first hit that popped up. Andrew called and sent in his MRI and a couple weeks later he had an appointment scheduled.
In October, 2012, Andrew came to Milwaukee. Above all, he remembers the sense of validation he felt when he first got to the Wisconsin Chiari Center. Andrew says Dr. Heffez didn’t promise him anything, but just hearing him say the brain stem compression and chiari malformation could explain everything gave him immense hope.
The decompression surgery took place one month later and the turnaround was complete and immediate. Andrew recalls waking up from surgery and instantly sensing that something was different, that everything was okay.
“I went in that day with all kinds of symptoms. I was coughing that morning, hiccupping that night,” he says. “When I woke up in the ICU, it was all gone. I felt pretty good, considering I just had brain surgery.” Even the hand tremors he had experienced since he was a child disappeared. Most likely, this was his earliest symptom that had gone unnoticed.
Today, Andrew is back in Miami, living his life without any worries about what mysterious illness will crop up next. He’s grateful for this new lease on life Dr. Heffez and the whole team at the Wisconsin Chiari Center have given him.
“It’s just a wonderful hospital with wonderful people. First class all the way,” Andrew says. “Everyone there was just out of this world. From the person putting in my IV to the guy who shaved my head, it was a wonderful, wonderful experience.”
A New Freedom
For as long as Terri Hoffman can remember, she’s been in pain.
Her frequent migraines started almost immediately as a toddler and with them came vomiting and bloody noses. In her teens and early 20s, the migraines subsided a bit but were replaced with colitis and joint pain – which turned into full-blown fibromyalgia as she got older. Then last summer, the dizziness and vomiting started. Pain was a constant part of Terri’s life.
Last summer, when Terri’s new ailments appeared, she attributed them to her new glasses. But even when she wouldn’t wear them, the symptoms remained. She was constantly bumping into things and falling over. At night, she’d be up for hours retching and vomiting with severe stomach cramps. And then, come morning, it would all just go away.
“I’m only 46 but I felt like I was 96,” Terri says.
Her faith in God and strong work ethic kept her going through it all, fighting through the constant pain and discomfort to raise a family and work at an elder care facility. But these new symptoms were too much so Terri started searching for an answer.
For awhile she came up empty, as she bounced from specialist to specialist. First her primary care physician thought it was an inner-ear issue and sent her to an Ear, Nose and Throat Specialist. That doctor sent her to a gastroenterologist, who subsequently sent her to a neurologist. It was through her neurologist that Terri finally received an MRI that revealed her chiari malformation. However, the neurosurgeon she was referred to thought the risk of surgery was too high and wanted to just treat the symptoms. Terri wouldn’t hear of it.
“I refused to leave with that kind of mentality,” she says. “I told the doctor, ‘You don’t know what I’m suffering through here.’”
Like most, Terri had never heard of chiari, so she scoured the Internet to learn as much as she could. During her searches, she would always see a website for the Wisconsin Chiari Center. Living about a half hour north of Seattle in Edmonds, Washington, though, she would just scroll past it. One fateful day, something inside her told her to click.
As she read about the work of Dr. Heffez and the rest of the team at the Wisconsin Chiari Center, Terri began to feel a sense of hope. She called immediately, sent over her MRI, and scheduled an appointment. On October 23, 2012, Terri packed a bag, said goodbye to her husband and two children, and boarded a plane to Milwaukee.
The surgery took place a week later. Dr. Heffez performed Chiari Decompression Surgery, in which he removed a small section of bone at the back of the skull and spine. He then sewed a patch of tissue into the lining of the brain that expands the space and relieves compression of the brainstem and spinal cord. Ultimately, this procedure frees patients of the pressure to the brain and the brainstem eliminating the symptoms associated.
Terri’s surgery went off without a hitch and within 48 hours, Terri felt like a new woman.
“I remember walking down the hall the first time and I was holding onto the wall,” she says. “A nurse asked if I was dizzy and I had to think about it for a second but, no, I wasn’t. It was just out of habit.”
Today, Terri is doing great. It’s like night and day, she says. The migraines are gone. The fibromyalgia is gone. The double vision is gone. The dizziness is gone.
“I’m so grateful to Dr. Heffez. Without him, I wouldn’t be where I am today,” she says. “It’s like living in a cage your whole life and then all of a sudden being freed from it. I’m just so grateful.”
Karen Kastamo has nothing but praise for the Wisconsin Chiari Center. She writes:
“My experience with the Wisconsin Chiari Center has been great. Finding Dr. [Dan] Heffez was a blessing. I remember leaving the Chiari Center, after seeing Dr. Heffez for the first time, so happy to finally have an answer to my many symptoms. Dr. Heffez and everyone that works with him have all been so wonderful…and helpful.”
A Search for Answers Leads to The Wisconsin Chiari Center
After visiting a number of doctors who simply wanted to prescribe drugs to cover her symptoms, Laura Barnett wasn’t sure where to turn.
“I could hardly walk across the room,” Laura says. “I had horrible headaches, numbness down my left leg and arm, and tingling. My symptoms would get worse as the day went on and, by about 10:00 am every day, they would be totally debilitating. I’m an active person, but I’d become very limited in my mobility. It was frustrating and depressing.”
While researching her symptoms online, Laura discovered The Wisconsin Chiari Center. After completing a Patient Information Questionnaire, Laura was contacted by the Chiari Center and an appointment was scheduled. At her appointment, Laura finally received a diagnosis: Cervical Spinal Stenosis, compression of the nerve roots of the spinal cord. In July of 2009, Laura had surgery to correct her condition.
Laura had nothing but praise for Dr. Dan Heffez of The Wisconsin Chiari Center. “Dr. Heffez was incredibly thorough and compassionate. He really cared and it showed; he worked to figure out what was really causing my symptoms and correct the problem. I believe he is really in this profession to help people. Dr. Heffez gave me my life back.”
Laura said the staff of The Wisconsin Chiari Center was tremendous, as well. “The administrative assistant was an angel and nothing but professional. She was caring and compassionate, but also quick and easy to work with. I felt very well taken care of the entire time I was there.”
Today Laura is healthy again and has resumed her active lifestyle; she’s even training for a marathon. Even better, she is once again able to enjoy activities with her two teenage children. Laura is always quick to recommend The Wisconsin Chiari Center to others; “I can’t say enough good things about it!”
Dr. Parker impressed with care given to his 30-year-old daughter at the Wisconsin Chiari Center
Dear Sir or Madam:
My daughter was recently a patient in your hospital. She had a correction of an Arnold Chiari Malformation Type 1, performed by Dr. Dan Heffez, and spent 2 nights in the Surgical ICU, and 3 nights on the Ortho/Neurological Ward. I was extremely impressed with all aspects of your hospital. The physical plant was in excellent condition. Everything was extremely clean and well organized. The staff was uniformly excellent and supportive.
I am a licensed Health Care Risk Manager and a member of several Risk Management societies. With my background, I have extensive experience in identifying weak spots in hospital systems. I was very impressed by everything I saw during my daughter’s stay. I could only hope for staff as caring, careful, friendly, and helpful as I found there. The organization of the wards made for efficient care, and I never saw any significant waiting times for supplies or medication. Special therapy was well timed and communicated to us very effectively, with easily visible reminders.
The coordination of the Chairi Center, headed by Dr. Heffez, and St. Mary’s Hospital was outstanding. There was a seamless transition for my daughter and our family from the initial workup to the surgery and throughout the recovery period. There were never lapses in communication, or confusion.
I would not hesitate to refer patients to your facility in the future. You should be very proud of your entire operation.
James W. Parker, M.D.
FAAAAI, FACAAI, FAACA
A Patient’s Search for an Answer
By: Sarah Ludwick
When your life depends on it, you will go anywhere, to any lengths, to save it. But for Sarah Ludwick — a corporate litigator, a wife and a mother — at age 32, she knew her time was running out and no one could tell her why.
In 2001, within five days of giving birth to her second daughter, Ludwick developed postpartum eclampsia, a rare condition that had spiked her blood pressure and caused brain swelling.
A spinal tap was performed to test for infection. As a result of the procedure, she developed a spinal fluid leak that resulted in the settling of her brain and the compression of her brain stem unbeknown to anyone. “I knew right away there was a problem,” Ludwick recalled.
She was sent to her home in Whitefish Bay to rest. “I was told the eclamptic symptoms would subside and my blood pressure would go down,” she said. But blinding headaches, short-term memory loss and overwhelming confusion impaired her ability to take care of her two-year-old daughter Hannah and infant Sophia. “Some doctors even thought I was suffering from postpartum depression,” she said.
Ludwick’s neurological condition continued to spiral downward. She had trouble grasping and holding onto things. Her balance faltered and she experienced crushing pain in her legs, numbness in her face and tingling in her hands. “They thought I might have multiple sclerosis or fibromyalgia, but I was also tested for cancer, Lyme disease, lupus and other diseases.”
She admits her symptoms were confounding. Ludwick had both cognitive and physical disabilities. She was immobile and bedridden for long periods of time, her memory continued to fail and her symptoms would change suddenly. “One week, I’d have problems with my right hand, the next week it would be my left hand.”
After two years of debilitating illness and pain, and no real diagnosis after seeing many doctors, she sought out a pain specialist in Seattle. “I flew out there barely able to do it physically. But I knew I was running out of time,” she said. The doctor told her the problem was neurological and she needed to see a brain surgeon. “He recommended Dr. Dan Heffez, a neurosurgeon who worked in Chicago at that time,” she said.
Ludwick unabashedly refers to Dr. Heffez as her hero. “He has an ability to really listen to his patents,” she said. Dr. Heffez diagnosed Ludwick with the malformation called Chiari. He also felt that the brain stem was being compressed along the left side by a major artery. In 2003, he performed surgery to relieve the compression of her brain stem.
“My condition had gotten so bad that the weeks before the surgery I had to sleep sitting up. I would have suffocated laying flat in bed. The artery was crushed up against my brain,” she said.
Heffez told Ludwick her situation was like the perfect storm – a physical predisposition to the Chiari malformation, high blood pressure and a spinal fluid leak following a spinal tap – all came together to cause her condition.
After surgery, Ludwick did well and it took her about a year to recover. She was becoming more active and getting physically stronger. “Cognitively, it was like night and day,” she said. But in 2005, she started to black out and have similar symptoms. Dr. Heffez determined that the right side of Ludwick’s brain stem was now being compressed by a second artery, a finding that was not noted in 2003. To conduct the repair, Dr. Heffez performed another similar surgery here in Milwaukee as he had recently relocated his practice from Chicago.
Ludwick continues to progress, although she has some persistent effects from the long term compression of her brain stem. A woman with finance and law degrees, she now has trouble helping her daughter with her 4th grade math. Ludwick also has some short-term memory issues and she has some level of pain throughout her body, but for the first time in a long time she can be responsible for the care of her family, which has been her goal all along.
Now at 39, Ludwick hopes her story gives hope to others. “Like me, most patients with Chiari are misdiagnosed and will see eight to nine doctors before getting a correct diagnosis. I have no doubt that if Dr. Heffez hadn’t correctly diagnosed me and done my surgery, I’d be dead,” she said. “He’s a remarkable man.”
Ludwick was willing to travel anywhere to save her life, yet it was here in her community where she found her answer. “It is amazing that this world-renowned doctor who specializes in Chiari malformations is right here. We are so fortunate,” she said referring to Heffez and his move to head the Wisconsin Chiari Center at Columbia St. Mary’s Hospital.