The Nerve Center

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?

1. 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.
2. 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.
3. “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.

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.