The Nerve Center

Missing My Mom

Mon, 03 Dec 2012 12:15:16 GMT

My mom, Mary Jane, died 8 year ago. Dec. 25 would be her 86th birthday. Several years earlier she suffered a stroke. She certainly was a candidate for a stroke. She smoked since she was 15; she handled stress poorly, mostly by drinking much too much; and her dad had died of a stroke in his early 60s. Additionally, she didn’t have any kind of a handle on other possible risk factors. She rarely went to the doctor so she wasn’t aware if she had blood pressure or blood sugar issues. She didn’t exercise, and her eating habits included a summer sausage sandwich on buttered white bread with a pickle and piece of cheese at 2 a.m. She consumed lots of salt and not many fresh fruits or vegetables.

One morning mom woke up with a terrible headache. She never got headaches. She was alone. My dad left for church every morning long before she awoke. As she told it, she got up and was very imbalanced. She kept bumping into the walls. She waited but nothing improved. She didn’t understand that this was an urgent matter in which time was of the essence. Finally, when my dad got home, it was clear that mom was in trouble. 9-1-1 was called and she was taken to the hospital. Upon arrival her blood pressure was more than 200 over 110.

“Sudden” is a key word with stroke. Sudden changes in vision, speech and balance and sudden numbness are symptoms. “Time” is another key word. 2 million brain cells die every minute during a stroke. In the United States, stroke is the 4th leading cause of death and kills more than 133,000 people each year and is the No. 1 cause of serious, long-term adult disability.

The Stroke and Neurovascular Program at Froedtert & The Medical College of Wisconsin is a Primary Stroke Center as designated by The Joint Commission. It was the first such center in Wisconsin and one of the first in the nation. The Froedtert Acute Stroke Team (FAST) is ready 24 hours a day to respond to the needs of stroke patients, quickly, and if necessary, with new and emergent treatments that are not always available elsewhere. The physicians and other staff are unsurpassed. And the programs here for stroke rehabilitation include physical medicine and rehabilitation physiatrists, physical therapists, occupational therapists and speech therapists, psychologists, psychiatrists as well as patient and family support groups.

Mom did go to a rehab center. She did regain most of the physical losses she had experienced. She could walk and talk, but she couldn’t think nearly as well as she did before. She loved words and could no longer play scrabble. She watched "Jeopardy" and "Wheel of Fortune" but didn’t beat the contestants to the answers any more.

She really suffered the psychological effects that can come with stroke. About 50 percent of people who have had a stroke experience depression. Sometimes it can last for as long as three years. Her doctors tried any number of meds and even an in-patient stay for depression. Her primary care physician finally concluded that something in the area of her brain that affects mood and motivation was damaged. Her depression was intractable.

I miss my mom. I miss the way she was before the stroke: Cadillac-driving, cigarette-smoking, vodka-drinking, poker-playing, hard-driving, business-savvy woman. That was her identity and it did not include thinking about “risk factors.” It’s impossible to connect that Mary with the thin, weak, apathetic, frightened person she became.

Could it have been prevented? She could have addressed the risk factors and quit smoking, drinking and worrying. She could have stopped avoiding doctors. She could have started exercising, eating right and finding ways to reduce stress.

If she had the stroke anyway, would it have made a difference to recognize the signs of stroke and come directly to Froedtert (she went to a closer, community hosptial)? YES! Quick treatment leads to better outcomes.

As I struggle with my own risk factors including, obviously, family history, I know that I will or my loved ones will respond FAST if this happens to me. I have a large refrigerator magnet that lists the steps to take:

Face – Does the face look suddenly asymmetrical, especially if the person tries to smile?

Arms – When asked to raise both arms, does one drift downward?

Speech – Is speech slurred or abnormal?

Time – Did this happen suddenly? Time is of the essence. Note the time that the symptoms first appear. There are some treatments only available soon after the symptoms appear.

Moving Forward

Tue, 16 Oct 2012 15:29:51 GMT

The 2012 Ride/Walk for Parkinson’s started out as a chilly, overcast day; but the warmth of the participants filled everyone’s hearts! More than 350 people rode or walked to raise money for the Parkinson’s Program at Froedtert & The Medical College of Wisconsin including the three Parkinson’s specialists here in Neurology, Karen Blindauer, MD, Brad Hiner, MD and Katie Spangler, MD.

We proved that family and friends trump disease and that exercise is good for – and possible for – all of us! With over 50 volunteers the day went smoothly. We even had a Medical College anesthesiologist, Zeljko Bosnjak, doing magic tricks in the Children’s Area! The kids were spellbound! Thanks to all who sponsored, donated, volunteered, and participated.

Trauma Season is Upon Us

Tue, 12 Jun 2012 11:27:51 GMT

Editor's Note: This is the first of a two-part blog entry.

Terrence Green spent 23 years in the military, including active duty in the Gulf War, before taking a position in Homeland Security. On January 16, 2003, at 2:30 a.m. driving just south of the Wisconsin-Illinois border on I-94, the brakes on Terrence’s truck failed. So did the emergency brake. Terrence still sees the next events, in his mind’s eye, in slow motion. The vehicle gained speed down a hill, took a nose dive, flipped over, and landed in the northbound lane facing on-coming traffic. Before the roof of his truck was cut open to pull him out, he remembers telling an officer on the scene, “Tell my kids I love them.”

Terrence believes that what happened next saved his life. His supervisor in Homeland Security, reached by phone, insisted that Terrence be taken to Froedtert despite the fact that he was in Illinois. Froedtert is a Level I Trauma Center with a well-developed Spinal Cord Injury Program. Thankfully his supervisor knew that. It’s OK – even a good idea – to ask the paramedics or ambulance personnel to bring an injured person here to Froedtert.

Terrence had damaged his C-4 through C-7 vertebrae. His spinal cord was swelling. By the time he arrived at Froedtert he was in a coma.

Terrence laughs about the fact that his name changed while he was in a coma. His sister started calling him “T-Bone” because while he was unconscious he repeatedly called out for someone to bring him a T-Bone steak! He is now “T-Bone” to just about everyone.

Spinal trauma

Traumatic spinal cord injury is usually a result of motor vehicle crashes, falls, sports or violence. The good news is that prevention and education efforts result in fewer and fewer traumatic spinal cord injuries each year. Cars are much safer. Air bags make a big difference. Injury prevention education makes a difference, too.

In addition to traumatic injuries, non-traumatic spinal cord injuries can occur due to a medical problem such as Multiple Sclerosis, Myasthenia Gravis, tumors, myelopathy (compression caused by degenerative spine disease), post-polio and more.

People with spinal cord injuries may require surgery if there is pressure on the cord or if there are bone fragments that must be removed. Sometimes it’s necessary to insert a rod to hold the spine together. T-Bone needed surgery that involved the placement of rods and titanium pins in his cervical spine.

The spine and spinal cord

The spine is a boney cage that protects the spinal cord. The spine has 32 bones (vertebrae). From top to bottom it is divided into parts – cervical spine, thoracic spine, lumbar spine and sacral spine. The higher the injury, the less function the patient has. Actor Christopher Reeve’s injury was to C-3. Injuries to C-1 through T-7 leaves a person with a range of paralysis called quadriplegia and involves a change in movement and sensation in all four extremities.

The spinal cord, which does not regenerate after being damaged, stretches from the base of the brain down through the lower back. It has a “jello-jiggler” consistency.

As a result of his accident, T-Bone has quadriplegia. He is a “functioning quadriplegic.” He is able to care for himself with very little assistance. That took some time and no small amount of work. “They are miracle workers,” T-Bone says of the team that works in the Spinal Cord Program. “They know when to push and when to back off. They won’t let you give up.” After the accident he could only move his eyes back and forth and now he can walk with the aid of a walker.

Often, the people who sustain spinal cord injury represent high risk takers, people that “live on the edge.” Adjusting to this type of devastating injury is probably the most challenging thing a person will go through in his/her life. In spite of this, most people with spinal cord injury return to being active, vital members of their communities.

The movie Murder Ball depicts the lives of a group of people with SPI that have formed a very aggressive basketball team. They play in light-weight, very fast wheelchairs and they exemplify the idea that it is possible to continue to live an active, exciting life with a spinal cord injury. Very often people return to the activities they enjoyed prior to their injury using hand controls, such as racing cars or skydiving in tandem.

Patients are helped by staff, other patients

Each year there are around 100 people admitted to The Spinal Cord Injury Center at Froedtert. Just under half of those have traumatic injuries. Working with these patients is an incredible staff that includes physicians and specialists in physical, occupational, speech, respiratory, recreational and vocational therapy. Nurse case managers, social workers, chaplains and psychologists are also important parts of the team.

The same staff provides a continuity of care by working with patients through their inpatient stay as well as their outpatient treatment.

Froedtert & The Medical College of Wisconsin neurosurgeon and researcher Shekar Kurpad, MD, PhD, is the medical director for the Spinal Cord Injury Center. It is a CARF (Commission on Accreditation of Rehabilitation Facilities) accredited program with a specialty designation in the Spinal Cord Injury System of Care. The Spinal Cord Injury Center serves as a clinical site for several research studies. Donna Johnson, RN, BSN is the program coordinator and has been with the program since its inception in 1986.

Every Tuesday evening there is a discussion group for people with spinal cord injuries – inpatients, outpatients and family members. T-Bone is a faithful attendee. After nine years as a person with quadriplegia, T-Bone is a great role model. He has learned to slow down and to share the advantages of slowing down with others. He has learned to deal with his chronic pain without the use of narcotics. He practices a variety of relaxation and distraction techniques that help him get through the day. He has learned that when strangers don’t treat him well because of his wheel chair, it is a reflection on them not on him.

“Peer Advisors” like T-Bone visit the unit every week. These are all people who have had spinal cord injury and have gone through the program at Froedtert. They volunteer to come in and meet people who have new spinal cord injuries. They meet and encourage their families. It is invaluable to know someone who has lived with spinal cord injury and has returned to life in terms of work, relationships, kids or school. It has been invaluable for me to meet T-Bone. His mark is everywhere in the Center from the Wii fit game he donated to the dart ball game he plays with young men on the unit. He has his favorite chair next to the microwave. He can see who’s coming and going from that seat. He calls out to the therapists, nurses and the people in the program. He can distract a young man with endless talk about sports or zero in on his need to discuss a personal issue. T-Bone is a role model, a father/brother/friend. He may view the dedicated staff of the Spinal Cord Injury Program as miracle workers; but they in turn view T-Bone as a miracle.

Trauma Season is Upon Us; Part II: Traumatic Brain Injury

Wed, 11 Jul 2012 16:27:35 GMT

Last summer, my youngest daughter fell at Miller Park during a Brewers' Game and hit the back of her head on the cement steps. She came home with a headache and nausea. She didn’t feel better the next day. In fact she felt confused and dizzy, too. She went to the Emergency Room here at Froedtert & The Medical College of Wisconsin. They scanned her head to look for any bleeding. Fortunately there was none. But they did diagnose her with a Traumatic Brain Injury. This was the first time I realized that a concussion is a traumatic brain injury. She was told she couldn’t work, couldn’t study, couldn’t exercise and couldn’t even think for a week. She was told to sleep or rest. If her symptoms did not improve, she was to come in to the Traumatic Brain Injury (TBI) Clinic in the Neurology Department. I work in the Neurology Department, and I didn’t know we had a TBI Clinic! That was before I met Mary Voegeli, Nurse Practitioner in Physical Medicine and Rehabilitation at Froedtert & The Medical College.

Mary informed me that falls are now the leading cause of Traumatic Brain Injury. Motor Vehicle Accidents moved into the No. 2 slot about 10 years ago as automobile safety improved. Violence is the third leading cause; sports the fourth and military incidents the fifth. Prevention is the only cure.

Mary is passionate about Traumatic Brain Injury. She has worked with people with TBI for 25 years — first at Sacred Heart Rehab and now here at Froedtert. She works with an amazing team. Kathy LaFavor, RN, is the program coordinator; Mark Klingbeil, MD, is the medical director and the son of Gerda Klingbeil, MD, who is a pioneer in the field of TBI. Sara Swanson, PhD, is the interim division chief of neuropsychology. She and several of her faculty members evaluate people with TBI including Drs. Bobholz, Geiger, McCrea and Sabsevitz. Mike McCrea, PhD, is a nationally known expert on brain injuries, especially those involving military and sports events. He has published numerous books and articles on “post-concussion.” He also conducts research funded by the U.S. Deptartment of Defense looking at the impact of concussion in the military.

Drs. McCrea (left) and Klingbeil review patient information together in the TBI clinic.

TBI can range from a mild concussion to coma. The injuries that result in a bleed, a clot or seizures often must be treated by a neurosurgeon. Sometimes a serious TBI will result in amnesia. The longer the amnesia lasts, the more serious the injury is. Repeated concussions can result in depression and other dramatic mood changes that can end in suicide. Behavior and personality can change and people can appear drunk. Athletes from grade school through professional sports are at great risk for repeated injuries. Dr. Julian Bales from the Brain Injury Research Institute has performed autopsies on athletes and the effects of head injuries and the findings are distressing. In response to his findings, “Play Smart” was developed and is promoted by the Brain Injury Alliance of Wisconsin. Play Smart is a statewide health initiative on concussion education and prevention that provides information on the signs and symptoms of concussion and how to respond appropriately. The material is intended for coaches, parents, athletes, volunteer coaches, athletic trainers and more.

Fortunately, over 75 percent of the incidents of TBI are mild and people recover. The difficulty for people on the mild range of the spectrum is that the disability can’t be seen. It’s an invisible injury and truly a silent epidemic. 5.3 million cases are reported each year and many more go unreported. If headaches or trouble focusing on school or work continue, the injured person must be seen by a medical provider. Brain imaging is ordered to rule out a bleed.

The person is treated in the TBI clinic by having a joint visit with Dr. Klingbeil who performs a physical exam including evaluating dizziness and balance and one of the neuropsychologists who tests to assess depression, cognition and concentration. If a brain injury is left untreated it can delay recovery. Fortunately there are some things that can be done:

Speech and language therapy can assist in improving thinking and concentration
Vestibular therapy and/or physical therapy offers help with balance and dizziness
The Otolaryngology Department has a program for tinnitus
The Neurology Department treats headache with a variety of non-narcotic medications
Psychiatry/Psychology can work with the patient on depression or anxiety
Occupational Therapy can access driving ability and develop a program for improving reflexes

As I think about TBI, I am embarrassed about an incident in my family some 20 years ago. At that time, my oldest daughter was a select soccer player. She was a fearless and aggressive competitor. I remember watching her in one game when she went in to head the ball at the same time her opponent had the same idea. Their heads collided and both girls went down. Sara vomited on the sidelines but insisted she was fine. She played the remainder of the game with a concussion. She went home to bed. I remember both my husband and I bragging that Sara was so tough that she had played two quarters with a concussion! I’d like to think that if I had known a concussion was “a traumatic brain injury” that I would have taken her out of the game. We are all beginning to know better; but more education is needed. Dr. McCrea is conducting a clinic for any/all coaches and trainers on the subject.

From left, Drs. McCrea and Klingbeil, Mary Voegeli, NP, and Julie Janecek, PhD, post-doctoral fellow in neuropsychology.

Mary Voegeli knows that TBI is a family illness. It is difficult to be empathetic regarding a condition they can’t see. There are some unfortunate stereotypes associated with TBI such as the assumption that the patient was doing something bad when this happened or the observation that the person must be drunk when they are simply dizzy and confused. Often the person with TBI becomes uninhibited resulting in inappropriate talk or behavior. At those times teaching the family to use a quiet room and calm approach is helpful. Sometimes ambient noise is very upsetting to the patient. Even the noise in a grocery store can set someone off. Knowing and avoiding those situations keeps life easier.

Sadly, many people with more serious TBI lose friends and relationships. They can become bored and lonely. This can lead to a higher incidence of substance abuse. These situations “break my heart, “ Mary says. She encourages people to attend the support group facilitated by psychologist Dr. Richard Markell for people with traumatic brain injury and their families. They meet on the 3rd Tuesday of every month from 6 p.m. to 7:15 p.m.

Mary’s hope is that people can return to work, driving, school and sports. Most patients can make progress indefinitely. “I don’t count anybody out!” Knowing Mary, that doesn’t surprise me.

Symposium Success

Mon, 17 Sep 2012 14:57:54 GMT

The 5th Annual Symposium for People with Parkinson’s and Their Families held Sept. 15 in Waukesha was a success with 350 attendees, 20 exhibitors, marvelous food and conversation!

People heard from Andrew Feigin, MD, on current research in the field of Parkinson's, and while some folks thought it was a bit “over their heads,” they were grateful to learn about the advances in the field and all of the treatment options in the pipeline.

Christa Lassen-Vogel gave a practical and encouraging talk on taking control of Parkinson's as an individual through the committed incorporation of exercise, understanding the nuances of the disease and good communication with your provider. Patrick Dean gave a moving presentation on care-giving and grief, focusing on keeping joy in our lives despite the losses.

Our own Karen Blindauer, MD, director of the Parkinson’s and Movement Disorders Program at Froedtert & The Medical College of Wisconsin, really stole the show with her detailed, comprehensive talk on just what is causing the variety of symptoms that can manifest as part of Parkinson’s. The fact that many of these symptoms develop years before a diagnosis of Parkinson’s is made makes finding a cure so very challenging.

From left, Christopher Sheridan, RN, program coordinator of the Parkinson’s and Movement Disorders Program, and Drs. Karen Blindauer and Katie Spangler.

You may have noticed the graphic at the top of this blog for the Moving Forward ride and walk. To enable us to provide community education events like the symposium to you at an affordable price we hold a fund raiser once a year. Please register to participate, donate or volunteer at the active.com website.

Our young onset Parkinson’s patient, Maureen Gile, and I were on the Morning Blend last week talking about this event.

A Well-Developed Program

Tue, 04 Sep 2012 14:29:31 GMT

What does it mean to be “a program?” Let me give you an excellent example. The Parkinson’s & Movement Disorders Program here at Froedtert & The Medical College of Wisconsin has a large, interdisciplinary team serving the needs of patients and families with Parkinson’s and other movement disorders. There are three physicians, Karen Blindauer, MD, Brad Hiner, MD, and Katie Spangler, MD. They are each neurologists who have specialized training and experience in movement disorders.

All of the nurses and neuro-rehabilitation therapists (physical therapy, occupational therapy and speech therapy) have specialized training in Parkinson’s disease. The team uses the services of a neuropsychologist, clinical psychologist, psychiatrist, registered dietician, social worker, research coordinator and outreach coordinator as well as a neurosurgeon and his team who handle deep brain stimulation (DBS) surgeries. DBS is a treatment option for about 15 percent of people with Parkinson’s as well as for people with essential tremor and dystonia.

Meet

These people meet every week to improve service to patients, to discuss candidates for DBS and to learn about community resources for our patients both inside and outside the Froedtert & The Medical College system. Working together and supporting each other is an essential component of teamwork.

Education

A new patient is educated about their disease through written information and a "Newly Diagnosed Orientation." Annually, there is a symposium for People with Parkinson’s and their families. Sept. 15, 2012, is the date for this year’s symposium at the Country Springs Conference Center. Over 400 people attend. Currently there is still space available. To register, call 1-800-272-3666. The program is rich again this year with Andrew Feigin, MD, movement disorders neurologist from the Feinstein Institute for Medical Research of the North Shore-LIJ Health System in Manhasset, NY, speaking on genetic therapy for Parkinson's. Christa Lassen-Vogel from the Davis Phinney Foundation will outline holistic approaches to managing Parkinson’s, and Patrick Dean, founder and director of the Wisconsin Grief Education Center, will conduct a caregiver-only breakout session on the small and continuous losses that people experience — and grieve for — when living with a loved one with Parkinson’s. Dr. Blindauer will give a fascinating look at Parkinson’s “under the microscope.” The research of Dr. Heiko Braak will be discussed along with non-motor symptoms of Parkinson's. It’s clear that there is often a lot more going on than simply a loss of dopamine and Dr. Blindauer will explain this. There are other talks and exhibitors that provide services and goods that make life easier for people with Parkinson’s. It’s the best deal around for $10 including breakfast and lunch!

Support

Patients and families receive support in many forms. There are 5 Parkinson's support groups, one essential tremor group and one Huntington’s disease group on campus and in the community. The services of the team social worker, psychologists and psychiatrist are utilized. Our community outreach coordinator also serves as a one-on-one contact by phone and in clinic with families that are struggling. Caregivers are of special concern for the program. If they “go down”, the whole ship sinks! The monthly caregiver support group is well-attended as is the Caregiver Holiday Tea. This year, on Saturday, Nov. 10, the program will present “A Survival Training Workshop for Caregivers” of people with Parkinson’s, Huntington’s and other movement disorders. The program offers support for the Huntington’s Disease Society of America’s state conference and is planning a social event for people with Huntington’s in their 20s 30s and early 40s with the hope that these folks would meet more regularly. The program will be at the Country Springs Conference Center in Waukesha. The fee for the event has yet to be determined, but it will be no more than $20. Call 1-800-272-3666 to hold a spot.

Financial support is also offered to various community exercise programs for people with Parkinson’s because exercise can reduce stress, improve balance and flexibility, and hold some symptoms at bay. Additionally, group exercise promotes socialization, which is so good for the brain and the spirit.

Fundraiser

How does all of this get paid for? The program offers the Symposium (for a minimal $10 per person); pays professional support group speakers; distributes loads of books and other written and other video materials; sends nurses and therapists for training in the latest treatment programs for Parkinson’s; makes financial contributions to four Parkinson's exercise/dance programs in the area; and this year, brings in a national speaker to work with our caregivers.

Once a year, the program raises funds. Moving Forward: Ride/Run for Parkinson’s is a day for people with Parkinson’s and their friends and families. No one talks much about Parkinson’s. People just have fun — exercising and socializing, eating and playing, entertaining their children and grandchildren. This year, Moving Forward: Ride/Walk for Parkinson’s takes place on Sunday, Oct. 7 from 8:30 a.m. to 1:00 p.m. in downtown Dousman. This will be the 4th Moving Forward event. Each year all of the money that is raised is spent on education and support for people with Parkinson’s and their families. Consider coming or donating to Moving Forward at http://www.active.com/event_detail.cfm?event_id=2039260. Or contact me at vconte "at" mcw.edu.

How to Have an Effective Clinic Visit

Tue, 31 Jul 2012 12:02:44 GMT

In the fall of 1999 I had been having some recurring right-sided abdominal pain. One event was so bad that I had to go to an ER; but nothing was discovered. I was given Ibuprofen and told to call my primary on Monday. At that time, I was not under the care of Froedtert & The Medical College of Wisconsin. My primary gave me a cursory pelvic exam and told me he assumed that a cyst had ruptured — there was no history of a cyst — and not to worry. When I pressed him about a referral to gynecology, he seemed miffed and said, “Well, if you don’t think I can handle those needs…”

This approach didn’t feel right to me so I called the office of the by-then-retired obstetrician/gynecologist who had delivered my kids. I found out I could get in to see his replacement on short notice. This specialist’s very thorough pelvic exam revealed a mass on my ovary and an ultrasound confirmed it. I was scheduled for a follow-up consult in his office later that week.

What are the teaching messages in this part of the story?

An ER is going to assess for immediate danger and refer you to your own doctor. Just because nothing is discovered in the ER does not mean that something isn’t wrong.
Any kind of a cursory exam is unhelpful. Many conditions require the expertise of a specialist, and it is not an insult to a primary care physician to ask for a referral to a specialist.
“Go with your gut.” If something doesn’t sound or feel right, it probably isn’t. With the right doctor, things started to go right.

I realized that this follow-up consult was critically important and that I would have to thoroughly understand what was being proposed so that I could make appropriate decisions. I brought along a dear friend — a nurse — to act as my second set of eyes and ears; to take notes and ask additional questions. My friend took extensive notes about what was discussed and decided during that visit. She typed up the notes and e-mailed them to me along with a few links to ovarian tumors and ovarian cancer. I pored over the information. For me, knowledge is power. I really understood what was going to happen and how the medical staff would proceed.

Teaching message? Bring someone with you to important clinic appointments. At some point in our life, we should bring someone with us to all clinic appointments. It doesn’t have to be a spouse if that person will be too upset or distracting or unable to contribute medical history or to take notes. Or if the spouse offers the moral support, a child or friend can offer the informational support.

Reading and re-reading those clinic notes was crucial as it turned out. I was scheduled for surgery on Wednesday, Nov. 10. Unexpectedly on Sunday, Nov. 7, I was rushed to the ER in crippling pain with a plummeting blood pressure. My ovarian tumor had ruptured and torqued my ovary. Emergency surgery was imminent. Despite the pain, the trauma, the drama, I remembered the extensive notes my friend had taken. Part of the plan had been that during my surgery, if cancer was found, my gynecologist and a gynecological oncologist would meticulously search through my intestines to see if any tumors existed there. That would require a clean colon. I knew my colon wasn’t clean, and I knew that it would be next to impossible to have the gynecological oncologist available at such short notice. I asked the ER doc to speak to my gynecologist and advocate for surgery the next day when both my colon and the correct surgeon would be available. I said that if the pain could be controlled, “GoLYTELY®” would do the rest. I don’t recommend postponing emergency surgery, but in this case, that’s what happened.

Monday morning the news was good and bad. The tumor had been malignant. It was starting to attach to the wall of my uterus. That meant it was staged as Stage II. But there was no doubt that it had not spread further. There was no evidence of tumors in the intestines. Most ovarian cancer isn’t caught until Stage IV when it has metastasized throughout the abdomen. I was very lucky to have had symptoms. Most women do not. I was also lucky that finally someone listened to my symptoms. Had I not insisted on following through with the original plan for surgery, I would have still had only Stage II ovarian cancer. But no one would have really known that. I would have waited and waited for that possible recurrence elsewhere in the abdomen. Knowledge is power.

After a course of chemotherapy, I have had no recurrence. This is a long and dramatic story about the importance of having someone with you on a clinic visit. It’s not my favorite story but it is the best story I know on the subject. Other tips to make your clinic visit productive are as follows and apply specifically to the Neurology Clinic here at Froedtert. In most cases these are good guidelines for most clinic visits.

Arrive on Time. Allow enough time to park and find the clinic. More than 15 minutes late may result in being rescheduled either later that day or another day.
Bring, or send in advance, medical reports and records related to the condition for which you will be seen.
Bring images related to this current condition. Bring/send the CD’s or films themselves, not just the reports.
Bring a list of your medications including strength, dosing, prescribing physician, how long you have been taking it and what the medication is for. Include over-the-counter and herbal medications and energy drinks.
Wear comfortable clothing — nothing too fussy or complicated to remove including stockings. Bring any assistive devices you use — canes or walkers.
Bring another person that knows you and your condition well. Another person can supply some of the medical history that you may not remember; they can take notes; they can ask questions you may have forgotten.
Bring the completed Medical History Form if one was sent to you.
Know what your goal is for the visit: a diagnosis, a second opinion, less pain, a cure, medication refills. Tell the doctor what is particularly important to you.
Be prepared to give a clear history. This can be written down or given by your spouse/child/companion if you are not able.
Bring a list of questions. The doctor will review it but will probably only be able to answer your top two to three questions.
Bring the information about the pharmacy you want to use. If you have a mail order pharmacy, you might also want to list a local pharmacy for any emergency prescriptions. To reorder medications, call your pharmacy and they will contact us.
After the visit you should call the office if you have questions about a new medication, medication side effects, new symptoms, the results of lab work or a study or if you thought a study or therapy were going to be scheduled. You will be calling the doctor’s nurse or administrative assistant. They will convey your concerns to the doctor, get an answer, and call you back. After hours and on weekends your call will be returned by the on-call resident.

Huntington's Disease Convention: The Apprehension and the Awe

Fri, 04 May 2012 11:58:35 GMT

On Saturday, April 21, I spent the day at the Huntington's Disease Society of America’s 10th Annual State Convention. Jean Morack, ACSW, MSW, MS, social worker for the Wisconsin chapter planned and facilitated the event. Jean also facilitates a monthly Huntington's disease support group at Froedtert & The Medical College of Wisconsin. Attendance at 148 participants was the best ever. This was my third year. I always go with a feeling of apprehension and always leave with a feeling of awe. Apprehension because it’s just a lousy disease and I don’t like to think about it. Awe because the people — the families I meet — who have to think about it, worry about it turning up in their children, and live with it 24/7 are such strong, loving, joy-filled people.

Carmen Leal was one of the keynote speakers. Carmen cared for her husband who had Huntington’s for 12 years. She often broke out in song throughout her presentation. And she was funny in that way that only someone who has suffered can be. It was so real. She was "disrespectful" of physicians who had misdiagnosed her husband and had closed their minds to the intense caregiving realities that she faced every day. She was glib about the kinds of down-and-dirty caregiving tasks that involved bowel and bladder and feeding issues. She was respectful of her husband and saw his humanity and love when he could barely form words any longer. The audience loved her.

Huntington’s disease (HD) is an incurable neurodegenerative disorder inherited in an autosomal dominant fashion (each child of someone with HD has a 50 percent chance of carrying the gene regardless of gender). It is characterized by progressive movement disorders, psychiatric manifestations, behavioral abnormalities and cognitive impairment. Symptom onset is usually between 33 years and 44 years; subtle cognitive and motor changes may precede diagnosis by many years. There are no proven therapies that slow the progression of HD.

Betty had come to the Neurosciences Center at Froedtert & The Medical College about five years ago. Even without gene testing, it was quite apparent to the movement disorders neurologists here at Froedtert & The Medical College that she had Huntington’s. Gene testing confirmed it. More people with HD are seen in the Neurosciences Center here than anywhere else in the state. After coming to Froedtert, Betty did better for a few years. Dr. Brad Hiner developed a strong bond with her and encouraged her to add calories in some creative ways and take a medication to help with her behavior issues. She went from 80 pounds to 120. She went through physical therapy and improved her balance. These years have been reasonably happy ones for Betty and her daughter and grandchild. But now, predictably, she is deteriorating. During lunch at the conference, Betty felt calm and I was calm and patient with her; so she talked to me and we teased each other and laughed. She has a great laugh. She told me her story:

Betty was adopted. She never knew her birth parents. Despite the fact that her symptoms were typical Huntington’s she was always just characterized as “eccentric.” She can be argumentative and has writhing movements. She has been detained by police more than once because of what appeared to be drunken behavior. She was not diagnosed until after her daughter had a child. Now, of course the daughter is “at risk.” If she tests “gene positive,” the daughter’s child will be at risk. Betty will probably not be with us at next year’s convention. She’s not eating much, she has swallowing difficulties, and she’s using a wheelchair. If she is still alive, she will need long term care.

HD often begins during a time when family life is most complex and therefore most disruptive to the family structure (e.g., child-rearing, career development). Children can be particularly affected: Distress is aggravated by concerns about their own genetic susceptibility, and as many as 40 percent of children of HD patients describe HD as splitting their family apart. Careful assessments of familial coping and psychosocial needs are an integral part of ongoing care for the HD patient. Melinda Kavanaugh, MSW, LCSW, is a Madison social worker who is doing a dissertation study on the experiences and needs of children or teens who are helping a parent with Huntington’s disease. Melinda was one of the facilitators of the youth gathering sessions at the convention. These kids need to know they are not alone.

Debbie’s father left the family when she was just a toddler. Her mother found him “difficult and different.” When Debbie and her sister were in their late teens, a man knocked on their back door. He appeared “spastic.” He said, “I’m your dad and I thought you should know that I have Huntington’s disease.” Both Debbie and her sister tested “gene positive.” They aren’t sure if they are symptomatic or not but they are very alert to that possibility. Debbie’s sister’s daughter is also gene positive. Debbie’s two daughters have not been tested but the youngest one “is a handful.” Is it because she is scared and mad? Is it because she has Huntington’s? Young-onset Huntington’s manifests very intensely. It has a different course of the disease than adult onset folks. But sometimes, a child or adolescent believes they have it, and it almost becomes their identity. That’s one reason that people cannot be tested younger than 18 and should only be tested after they have gone through genetic counseling. The reality is that both young-onset and adult-onset people can have a life — relationships, work, hobbies, interests, joy. Over time it becomes more difficult to hold on to those things. Sometimes the knowledge that they are gene positive puts that life in limbo. I’ve seen young people stop all manner of living and simply think about, write about, talk about Huntington’s. It’s understandable but very destructive.

Common Symptoms and Supportive Care

Patients are best served by an interdisciplinary team familiar with treating patients with HD, like the one at Froedtert & The Medical College of Wisconsin. First-line strategies are non-pharmacologic and include gait/balance training, speech therapy, and orthotics and leg weights to assist with upright posture.

Pharmacologic therapy can treat the following:

Chorea (involuntary, writhing-like movement) is the most frequently targeted symptom for pharmacologic therapy.
Depression is a significant psychiatric problem and rates of suicide are higher in HD patients than the general population.
Agitation is also common, and a small number of patients develop psychosis and emotional lability (including episodes of extreme anger).
Manifestations of anxiety including those related to eating.

Establishing strict daily and hourly routines can help lessen anxiety, short-term memory deficits, intrusive thoughts, and fear of abandonment. Gradual loss of memory and executive function are common. Consequently, increasing impairments in initiating movements and conversation occur. Yes/no questions may be preferable over open-ended questions when cognitive impairments become severe.

Jim is 40. He's divorced. He has a teen-aged son. His dad divorced his mom when Jim was a kid. She was “odd.” Her mother was in a mental institution. Neither was ever gene tested or diagnosed with HD. His mom died of something else. Jim had trouble at work and lost his job. He’s not able to concentrate or focus and is having problems with his speech. He has problems reading and can’t concentrate or comprehend. He can’t remember appointments. He lost almost 50 pounds. He has a “muscle twitch” and often feels like he’s going to fall. Even though Jim lives alone, he has to rely on his dad now to take him to appointments ... and to things like the Huntington’s convention. Jim and his dad are amazingly nice guys. I’m glad they came. I’m glad I came too.

Epilepsy — 1970 and Today

Thu, 26 Apr 2012 14:27:37 GMT

A seizure is an electrical storm in the brain. A “provoked” seizure might be the result of childhood fever, electrolyte imbalance, or alcohol or drug withdrawal. If an individual has more than two “unprovoked” seizures they are diagnosed with epilepsy. As with other diseases, the person comes first. Once the diagnosis of epilepsy is made, the individual is a “person with epilepsy,” not “an epileptic.”

My cousin, Mary, is a person with epilepsy. She was 2 years old when she had her first seizure. That was just over 40 years ago. She has been on seizure medications ever since. And most of that time she has been taking the “old generation” of meds. They had numerous long-term side-effects, many of which my cousin suffered: problems with gums and teeth (I remember at some point in her childhood, all of her teeth were capped with silver); loss of calcium leading to osteoporosis (she has incredible pain in her hips and lots of mobility issues). She built up a tolerance to the medication and had to take higher doses on a more frequent basis leading to more side effects.

I asked Linda Allen, RN, coordinator of the Epilepsy Program since 1991, what has changed in the last 40 years. The short answer was, “A lot!” The longer answer is extremely interesting and hopeful. She covered medication options, diagnostic tools and surgical interventions.

Brain imaging has dramatically improved. Pictures taken of the brain with strong magnetic capability allow for more slices of the brain to be seen, uncovering lesions that may not have been seen with older imaging.

Any abnormality on an MRI is called a lesion. Lesions in the brain such as tumors, blood vessel abnormalities, stroke and scar tissue may cause epilepsy. Still, two-thirds of epilepsy is of unknown etiology, or cause.

There were eight anti-epileptic drugs 40 years ago that are now called the “old generation.” Today there are 17 more FDA approved “second generation” medications with far fewer and less harmful side effects.

Sometimes lesions can cause uncontrolled seizures even when a person with epilepsy is “on meds.” For these people, surgery would be considered.

Surgery has evolved tremendously. The entire pre-operative protocol is very extensive. When Linda started working here the EEG machines were paper and ink and EEG techs had to fill the ink wells before starting the test. Each EEG produced a one-inch thick ream of 20 x 24 inches of paper. Now they use digitalized computers so record storage isn’t an issue.

Besides the EEG, other equipment that gives precise results are the 3T High-Resolution MRI scans, the fMRI or WADA, the MEG scan, and sometimes a SPECT or PET scan. Those tests along with Neuropsychological testing give a complete picture of whether someone will be a good candidate for surgery.

Most surgeries first require that an invasive set of electrodes be placed on the brain to monitor seizures and function. The first group of tests helps the team to “know the neighborhood” in which they will be working to remove tissue. The results of these electrodes give the exact address. Additionally, the electrodes monitor seizures and function so that only the correct tissue is removed. Occasionally it is required to perform this as “awake surgery” so that the patient’s function can be tested during the operation.

Essentially, the surgery removes the “epileptic zone” of the brain. Here at Froedtert & The Medical College of Wisconsin, we have an incredible surgeon, Dr. Wade Mueller. He has been with the program since its inception in 1991 and has performed many hundreds of epilepsy resections and brain tumor resections. Dr. Manoj Raghavan, the director of the Epilepsy Program, has been with the program since 2003. He is a key team player for decision-making for epilepsy surgery.

For patients who do not want surgery or are not candidates based on the criteria, another option exists. Dr. Mueller also has one of the highest number of Vagus Nerve Stimulation (VNS) procedures in the country. VNS is a pacemaker-like device implanted in the chest with a single wire tunneled to the vagus nerve. Dr. Mueller is assisted in the operating room by the Epilepsy Program medical director, Dr. Manoj Raghavan. The average response rate to this procedure is a 50 percent reduction in seizures or intensity.

More treatment options are coming down the road. Deep brain stimulation, responsive nerve stimulation and transcranial magnetic stimulation are all currently being researched.

Froedtert & The Medical College of Wisconsin offer all of the latest treatment options along with experience and willingness to educate and support patients and families. Linda Allen, along with Froedtert social worker LeeAnn Lathrop facilitate a month epilepsy support group on the fourth Wednesday of each month from 6:30 to 8 p.m. in Conference Room 2NT at the hospital.

There are weekly comprehensive meetings with both the Froedtert staff and the staff of Children’s Hospital of Wisconsin to review the care of individual patients.

It all makes me wish that cousin Mary was 2 years old again.

We Begin at the Beginning

Mon, 16 Apr 2012 15:42:25 GMT

No one comes to the reception desk in the Neurosciences Center “at the beginning” of their illness or when first presenting symptoms. Many folks have already been to numerous providers to finally arrive at the door of the specialists here that have the ability to make an expert diagnosis and begin a treatment plan. You may be weary. You may be wary. Know that we will welcome you.

And yes, you will have to begin at the beginning. Being a “good historian” is so helpful when first meeting with a physician. If you aren’t one, bring someone who is: a spouse, a child, a close friend. Sending ahead or bringing thorough medical records with you helps provide this history. So do scans and labs, etc.

At that first visit you are a puzzle that the physician has to piece together through observation, information gathering and possibly some new scans and labs. If the doctor seems to be doing more thinking than socializing, that’s OK. These are a group of extremely bright and well-trained physicians. They are the teachers and mentors of the next generation of physicians. When their thinking caps are on, you are the beneficiary.

You know the expression, “it’s not brain surgery?” Well here, many times it IS brain surgery ... or nerve biopsy ... or magnetoenphaography ... or ... Deep Brain Stimulation. Or 100 other diagnostic tools and treatment options, many of which we will discuss in this blog, which I'm calling "The Nerve Center." We will also talk about successful clinic visits and successful communication with your care team.

So, this is my beginning with you here in The Nerve Center. I’m not a physician or a nurse or a social worker. I’m an old English major who has a generalist’s background. That sounds almost military, but I’m not that either. I’ve been lucky to learn enough along the way to be helpful to patients and families in the areas of education and support. I’m hoping that being a “lay person” will allow me to write about the neurosciences in a way that is understandable and helpful.

I hope to be able to gather information and stories from our practitioners and our patients that you will find interesting and even enlightening. If you have specific topics you’d like me to research and discuss, let me know.