Road to concussion recovery longer for one twin
In March 2013, we wrote about twin sisters Adrianna and Michelle, who suffered concussions 24 hours apart. Since that blog post appeared, Adrianna suffered second and third concussions. The girls’ mother, Karen Schlossmacher-Smith, RN, a nurse at Children’s Minnesota, writes about Adrianna’s experience coping with traumatic brain injuries.
Karen Schlossmacher-Smith, RN
My daughter, Adrianna, suffered her first concussion after hitting her head on the court during a basketball game in January 2012. Two subsequent concussions led to the start of a long road of recovery, one she still is navigating with the help of Children’s Minnesota and its concussion clinic.
At the time of her first concussion, before Children’s had a concussion clinic, Adrianna received a CT scan elsewhere that revealed no bleeding. She performed frequent computer baseline testing until she was cleared about six weeks later.
In January 2013, Adrianna’s head was stepped on during basketball. She experienced blurry vision and was seen by the Children’s Concussion Clinic, where she saw a physical therapist who evaluated gait, endurance and some visual/balance issues. Headaches were minimal. Once again, she was cleared to resume normal activities six weeks later after passing computer, visual and balance testing.
Adrianna’s twin sister, Michelle, followed with a concussion of her own 24 hours after Adrianna’s second had occurred. This, too, was from basketball. Michelle was seen in the ER with extreme light and noise sensitivity and slight headaches. Noise sensitivity plagued her for several weeks and altered her activities and interactions with friends. She was cleared after the same physical therapy, visual/balance and computer testing. But Michelle stopped playing basketball to avoid any further concussions from the sport and is focusing on diving, where this year she placed fifth at the state meet.
On June 25, 2014, Adrianna, who also dives and was attending a camp, smacked the water with her left-front forehead and saw stars. She rested briefly and was told to try again. She did and hit the front of her head again on the water and saw stars but performed the next day. Upon a discussion with the coach about the incident, we noted her right eye was dilated. Fifteen minutes later in the car, she appeared to be fine, with no complaint of headaches.
Shortly after the diving incident, Adrianna was hit on the left side of her face with a ball while playing lacrosse. What followed were occasional days of not feeling well but no obvious eye dilation.
In mid-July, our family took a trip to Colorado and Wyoming. Adrianna became sick immediately after activities and exercise. She was ghostly white, dizzy, nauseated, vomiting, and had extreme headaches, right-pupil dilation and couldn’t stand. She was taken to the ER, where a CT scan was done due to previous injuries. A concussion and altitude issues were examined as the severity of symptoms came on quickly. She slept for most of the next two days.
Adrianna went on to suffer from severe headaches, visual impairment, a dilated right eye, dizziness, and an abnormal gait. She entered Children’s Concussion Clinic again under Mary Koolmo, APRN, and Ann Hickson, MD, an ophthalmologist who specializes in concussions and visual impairment associations. Headaches remained severe, 24/7. She always awoke with a baseline headache of about 4, and then within an hour would be at a scale of 8-10, depending on activity. Basic medications for pain had no effect.
She began working with Katie Gehrz in occupational therapy for visual disabilities and Jenny Henrickson in physical therapy for balance and overall vestibular issues. Henrickson was astute to the drops in blood pressure, dizziness and rapid increased headaches and made a request for Adrianna to see a cardiologist.
She started taking amitriptyline, a black-box drug that was used formally for depression, seizures and headaches. An electrocardiogram (EKG) was done for baseline. She passed out within 24 hours of taking the pill. The pill was slowly advanced as the medical team didn’t think it caused this blood-pressure drop with one dose but Adrianna passed out a second time. She saw Rodrigo Rios, MD, a cardiologist for postural orthostatic tachycardia syndrome (POTS) due to rapid heart rate and passing out. Dr. Rios’ plan was to have Adrianna drink a lot of water — 80-100 ounces is the range we have heard from many in the field — increase salt intake and get to the ground if she felt like she was going to pass out. Upon a third increase, Adrianna passed out again. A side effect of this medication is low blood pressure, and there was a thought that the medication probably exacerbated her POTS. The medication required a slow withdrawal period where she had no pain control due to side effects.
She continued her eye training through Dr. Hixon and to be supported by Gehrz in OT. Gehrz worked on eye exercises, visual perceptual, memory issues and tracking. She was aware of how Adrianna became fatigued with only 5-10 minutes of activities. Adrianna’s eyes would be lively upon arrival then she would look completely drained, turn pale, and headaches increased quickly. Many days, therapy would have to include frequent breaks to try and lower her headache threshold. Sometimes Adrianna would go home and rest for a few hours then return to school.
Starting high school increased the difficulty of dealing with Adrianna’s post-concussive symptoms. She didn’t want to be separated from her friends. School staff mentioned the possibility of home-schooling; it took a lot of time and energy for staff at Adrianna’s school to understand the impact of what she was facing versus that of about 40 other kids with concussions. True visual impairment meant she couldn’t read because she couldn’t see words due to the inability to wear her contact lenses or glasses.
Only a couple of Adrianna’s friends knew she had another concussion. Sometimes it seems like everyone who suffers a blow to the head today is diagnosed with a concussion. Some have no residual symptoms after two days, some have an occasional symptom, and then there are others who are severely compromised to the point that daily activities are altered immensely.
The concussion clinic has added a person on staff to work with school districts in regard to attendance issues, as it can vary in need among students. (Long-term concussion issues can lead to depression and anxiety due to medications and loss of what previously was normal. Adrianna chose to stay involved, paced activities and knew her own limits. Overall, this, as well as having a supportive sister, is what kept her positive.)
One evening, after a routine trip to the concussion clinic, Adrianna was feeling so sick with severe headaches, she was admitted for a short stay and received IV fluids and pain medication to try and counteract the headaches. A CT scan was done to assess any changes since her previous MRI. The fluids had no effect, and the medication relief was brief. Lab results offered up low ferritin and lower vitamin D levels. She was started on some medications to increase these levels with thoughts that increased levels might help with headaches.
Adrianna is in her eighth month since her most recent concussion. Some visual improvement has occurred over the past nine months. She had surgery at Christmastime to drain and clear a mass area near her left nasal-eyebrow region. The surgery performed by Frank Rimell, MD, had its risks, but through consultation with another ear, nose and throat doctor, Barbara Malone, MD, it was felt to be in Adrianna’s best interest to go in and remove the cyst-like matter in hopes of relieving some ongoing pain.
The challenges to date: She has had 30-plus weekly occupational and physical therapy visits, and speech therapy with Melanie Gylling, who assists with strategic methods for educational learning, memory and strategic problem solving and organizational skills in daily activities.
Adrianna continues to follow monthly with ophthalmology and neurology with eye testing for visual depth and tracking. The number of missed school days has been a stressor, but she has learned to advocate for herself. Her processing skills from simple to logistical have been hindered with the third concussion. Reading is done with size-20 font, and she has worked up to 10-15 minute intervals. Her school provides notes and tests with enlarged text, but sometimes the tests are read to her. Her books are on audio, and she records notes during class. Audio is somewhat difficult to revert back to for consecutive homework assignments that might later be added by a teacher.
A neurological assessment exam was done to identify areas of learning that Adrianna may need support in educationally now and in the future, as well as in problem-solving issues more strategically in her everyday life. Simple items and tasks that once were simple now have to be re-evaluated to solve. We’re in the process of obtaining/trialing Livescribe, a pen for note taking in class. Adrianna is able to recite back three to four items in a list when asked to recall. She has not been cleared to work on computers yet, though she gets time each day to use Snapchat to communicate with friends.
Adrianna’s visual field is somewhat clear at 8-12 inches from her face. She jumps back if anything comes within this spatial area. Since having surgery, her right eye no longer is dilated as it had been for six months. She went nearly seven months without exercise, other than walking, and since has been cleared for light aerobic exercise on the treadmill and light swim stokes without her heart rate rapidly increasing.
Since using propranolol for headaches at the suggestion of Dr. Rios, Adrianna hasn’t passed out and her headaches have subsided. The million-dollar questions are: Did the mass removal stop the headaches? Does propranolol mask the headaches? And if she comes off the medicine, will headaches return, or is it a combination that turned the tide?
Adrianna has remained positive throughout this ordeal. She passed her driver’s permit test on her 15th birthday, though, unlike her sister, she hasn’t been able to drive. Adrianna knows contact sports no longer will be a daily part of her life. She has helped manage Michelle to a state diving record. Adrianna plans to manage the boys’ basketball team and track and diving teams to stay involved in the sports that once filled her schedule. Her teachers have been supportive, and she has done well in school with no decreased loads, though with extreme effort and time.
Adrianna’s friends rallied for her during surgery, and she quickly has learned how life can change, to appreciate what you have and make the most of it. Live your life, don’t just exist!