Living Through a Traumatic Brain Injury: Macie Norrod’s Story

It was a Wednesday like many others when Macie Norrod was at her high school talking with friends when she passed out while walking down a flight of stairs, falling headfirst over 15 steps. April 8, 2015 was the beginning of a journey into discovery as to what can happen to a person when they experience a concussion and/or a traumatic brain injury (TBI) and find themselves for a time with more questions than answers, more frustration than hope.

According to the Center for Disease Control, concussion is a type of traumatic brain injury—or TBI—caused by a bump, blow, or jolt to the head or by a hit to the body that causes the head and brain to move rapidly back and forth. This sudden movement can cause the brain to bounce around or twist in the skull, creating chemical changes in the brain and sometimes stretching and damaging brain cells. Medical providers may describe a concussion as a “mild” brain injury because concussions are usually not life-threatening. Even so, the effects of a concussion can be serious. In 2012, an estimated 329,290 children (age 19 or younger) were treated in United States emergency departments for sports and recreation-related injuries that included a diagnosis of concussion or TBI.

In 2013, falls were the leading cause of TBI and accounted for 47 percent of all TBI-related emergency department visits, hospitalizations, and deaths in the United States. Macie has become a statistic and her road to recovery has been long, discouraging, frustrating and emotionally exhausting for her and her family. But through it all, she preserves exclaiming, “I like to say that I didn’t choose to be a patient, but I did choose to be a survivor.”

Gina Norrod, left, and her daughter Macie have been on a medical journey for over two years searching for the correct diagnosis and treatment for Macie’s injury after a fall down her high school stairs April 8, 2015. Photo provided

The daughter of Kevin and Gina Norrod of Knoxville, Tenn., Macie was an incredibly outgoing young lady before her fall. She was a cheerleader and very active in her school, church and community. In a recent interview with Coffee County News – CCN, Macie and Gina describe the incredible process they went through for Macie to receive the correct diagnosis and the treatment that followed and continues still. They share their story in the hopes that it may someday help others who find themselves in a similar situation.

CCN: What caused Macie to pass out?

Macie: Doctors are still very unsure. At times, they have wondered if it could have been my heart rate and blood pressure, but no definite diagnosis has been given.

CCN: What happened afterward?

Macie: Immediately after I fell, I thought I was fine besides the scuffed up knees and embarrassment, of course. I texted my mom and told her, and she came to pick me up from school, and we proceeded to have a normal night. I went to my brother’s baseball game, and sat through two games without a problem. My mom made me a doctor’s appointment for that Friday.

Gina: Macie DID NOT have any bruising or pain on her head. Her legs and feet were bruised. I wasn’t really concerned the day it happened. I called the doctor the following day. On Friday, with Macie fasting, she had a lot of blood work completed, and had her first, of many, doctor appointments. During this appointment, Macie had an EKG and weighed 104 pounds. The doctor was concerned with Macie passing out more than anything. She had to wear a 48 hour heart monitor. We had to go buy a cordless home phone in order for her to be able to call in through the heart monitor for results every day. Macie`s doctor thought that her blood sugar may have been low, but she had drank a water bottle, ate cheese cubes, a cutie, and goldfish throughout the morning. So the low blood sugar was not the case.

All tests performed that day came back with normal results.

By Saturday, Symptoms Manifested Throughout Macie’s Body

The following Saturday morning Macie began having undeniable symptoms that something was wrong.

Macie: I was unable to get out of bed on my own, I could hardly walk, and I had to be carried up the stairs because my body was too weak to hardly move. I became both mentally and physically fatigue. I felt brain dead. I was constantly confused, tired, and unable to finish my sentences, or think for the most part. My mom got me back into the doctor first thing on Monday, and the doctor ordered a CAT scan for the following day.

Gina: Before Macie was diagnosed with the concussion, we had warnings (that I am able to see now). Macie and I got in a fight at Kroger over her miscounting bananas. It took her three times to get it correct. That same day she read a banner wrong. When we asked her to count fingers it took her two times to get it correctly. Macie also would not be able to get her sentences completed. It was like she was tonged tied. It happened when ordering food, answering questions at the doctor, and at home in general.

Macie: My scan came back normal (which was a blessing), but we were getting really upset that we couldn’t figure out what was wrong with me. At that time, it hadn’t even been a week after my accident, and we had no idea what we were fixing to go through.

Gina: Before Macie`s concussion was diagnosed, the doctor thought it could be an inner ear/ vertigo problem. She went to a specialist for this. After this was negative, and the CT scan came back negative, Macie was diagnosed with the concussion.

CCN: How many doctors did you see and what were they telling you?

Macie: Besides my regular health doctor, the first doctor I went to (Dr. Amber Luhn) was a Concussion Specialist at Knoxville Orthopedics (KOC). She referred me to a Cardiologist at Children`s Hospital. He ordered another EKG and an echocardiogram. While for the most part everything seemed normal, we were still very confused as to why I passed out. The next new doctor I saw was a Neurologist at Children`s Hospital. He proceeded to tell us that my problem was nothing due to a neurological problem. He ordered an EEG that once again, came back normal. For the next eight months, I continued to see Dr. Luhn at KOC. She told me for a few months that my injury was not healing because of the “anxiety and depression I had”. I know myself better than anyone, and I knew that I was sick. I was losing hope.

Seeking Help from Vanderbilt

Macie: Finally my mom ask to have me sent to the Children`s Hospital at Vanderbilt. There I saw a Neurologist. The Neurologist at Vanderbilt gave me hope. She told me that she had not seen very many cases similar to mine, but the ones that she had seen, began disappearing at the one-year mark. She sent me to a Sports Neurosurgeon Psychologist. He proceeded to tell me everything that my Concussion Specialist had been telling me. That “everything is due to anxiety and depression, and you are no longer sick with a concussion. You should resume school this Monday.”

Gina: I was so disappointed in him. He said we were blaming every little thing on the concussion (ex. headaches, sleep patterns, dizziness, head fog, fatigue). There was absolutely no way Macie could attend school at that time, but according to the doctor, she should get back to school the following week.

Frustration Grows With Mixed Diagnosis’s

Macie: As my mom, grandma, and I stormed out of his office, I began to start second guessing myself. I started to wonder if everything they have been saying is true. “Am I really making this up? Is all of this my fault?” I wondered. I also saw a Pediatric Cardiologist in Kentucky that proceeded to repeat everything my other doctors were saying. From there, I went to see several therapists whom all seemed to think the doctors are crazy because according to them, I do have “some anxiety from all of this (because who wouldn’t?), but no signs of depression.”

The Set Back

During May and June of 2015 Macie began to get better. Although she wasn’t back to normal cognitively and physically, she was healing. June of 2015, she was able to go with her church youth group to South Dakota on a mission trip and by July, she had been released for light exercise. But what she had hoped was a turn for the better ended up being a turn for the worse.

Macie: July 15, I went for a jog mid-day and I blacked out when I got back home and from then on, it has been a rollercoaster. I began to not be able to sleep at all through the night. I went night after night without being able to close my eyes at all. It wasn’t until October when I developed an ulcer in my tummy that caused me to constantly be nauseous. I lost 7 pounds in 20 days. I became very weak. By December of 2015, I got down to my all-time low, weighing 89 pounds. Starting out weighing 104 pounds, my mom and grandma were really concerned. The majority of the weight that was lost, was muscle.

The Diagnosis

In October, Gina and Macie met with Dr. Luhn again for further examination and consultation.

Gina: Dr. Luhn said that she had helped Macie as much as possible. She got Macie on Patricia Neal`s (Patricial Neal Rehab Center) waiting list for a neuropsych exam with Dr. Klitzke. Macie did not get an appointment until March 2016 because of the long waiting list. I thought Dr. Luhn was crazy because I did not know what a neuropsych exam was, but thank goodness she put us on the waiting list. She also could not get Macie into Dr. Naramore, a psychiatrist, until February 2016. There again, I thought she was crazy. I did not understand exactly what a psychiatrist did. From October of 2015 to March 2016, I really felt like Macie had fallen through the crack until we were finally able to see Dr. Klitzke. If Macie had of been able to see either Dr. Klitzke or Dr. Naramore in October 2015, I think present day would be extremely different.

Gina: In the 9 hour test with Dr. Klitzke, he was able to observe Macie really well. During those nine hours, Dr. Klitzke saw Macie engage in the Q&A, she fell asleep, had panic attacks, and zoned out. As a parent, I was educated greatly in terminology and sleeping information and how it affects the brain. How powerful sleep is to your brain should really be taught in health class at school. Sleep is SO important, and Macie herself will be the first to tell you that you cannot function without sleep. She went almost a full year with sleeping maybe 2-3 hours a night (with no naps). Anytime Dr. Klitzke said a word that I was not clear on, I would interrupt him and ask. I am so glad I did that. Macie and I had not realized she had panic attacks hourly until the visit.

Macie: Dr. Klitske diagnosed me with the following: 1.) post concussive syndrome, 2.) mild neurocognitive disorder, 3.) memory disorder, 4.) insomnia, and 5.) panic disorder. All of these were strictly due from my concussion.

Treatment and Prognosis

CCN: What was the treatment plan and how long were you treated?

Macie: From the day I was diagnosed in March of 2016, our plan was to get my sleep fixed and to see some sleep doctors. The doctor said that as soon as my sleep was fixed, I would start healing cognitively. As of right now, my sleep schedule at night is normal. I am still under medication nightly for that, but with meds, it is normal. As for the treatment ending, that will unfortunately never stop. My doctor just told me a few months ago, that at this point I may not be getting any better cognitively and that I will have to learn to work around my daily struggles.

CCN: What is the doctor’s prognosis?

Macie: I will never be fully recovered. Unfortunately with a brain injury like mine, things are permanent, but compared to how I have been at times, I’ve improved greatly. I like to say that I didn’t choose to be a patient, but I did choose to be a survivor. I have to work so hard to continue to survive each day.

CCN: How are you now?

Macie: Currently my physical strength is back! I am now able to eat without getting nauseous, and I have gained my weight back.

CCN: What life changes have occurred since the accident?

Gina: I had to be careful for Macie to not get depressed. Dr. Luhn said that social media and getting Macie out of the house was a MUST to prevent depression. Not being around friends, social media was very important in keeping Macie connected socially.

Macie: My whole life has changed completely. I have had to get used to my new normal. Not being able to be with my friends at school on a regular basis has probably been my biggest struggle. I`ve struggled with “friends” questioning if I am really sick. Since I look normal on the outside, people assume I’m normal on the inside. People often make fun of me for things that I can`t control due to my disorders. I never thought that going to church would do harm to my body. I can barely sit through a service without having a panic attack, or feeling like my head is going to explode. Going to the doctor weekly, has definitely been different for me. I used to be so scared to go to the doctor, and now it feels like my second home. There have been so many life changes that I could never state them all. My brain injury doesn’t define who I am, it is just a part of me.

Macie’s New Normal

It’s been over two years now since Macie’s fall down the high school stairs. She is still under a doctor’s supervision and continues to take several daily medications as part of her treatment. But on the positive side, she has been released from her Patricia Neal Rehabilitation Center counseling sessions. As for school, until recently Macie was able to only attend one class at school and stay about 20 minutes, which she considered a blessing. The rest of the time, she was on homebound. Macie will soon begin her senior year and her schedule at this time is for her to attend school for one regular class and one elective class. She will have a homebound teacher for her other two classes. In the past few weeks, Macie has also started working some at a law firm and she says, “It is going absolutely awesome!”

Moving Forward with a Positive Attitude

CCN: What have you learned from this life changing event?

Macie: I have learned so much over the past two years. I have learned to not take the little things so seriously, to stay positive through anything life throws at you, and to never lose your faith. This might sound weird, but I am thankful for my brain injury. I would not be the person I am today without it. I try to inspire people every day that even in the lowest times of your life, to not give up. In January, when my life had hit an all-time low, I signed with a modeling and acting manager. Since then, I have signed with one state agent, and one national agency. This journey has really showed me that just because God closes off a few parts of your life, that doesn’t mean He doesn’t have something even greater planned for you.

CCN: What role has your faith played through all of this?

Macie: I have talked to God so much through this time. He has literally been the only person that can actually understand what I`m going through. He`s blessed me in so many aspects.

A Parent’s Advice

CCN: Gina, what would you have done differently from when you first got Macie’s text?

Gina: I would have told the school office when I signed her out early that day what had happened. I would have had Macie go straight to sleep in a dark room with no phone, (having learned that when someone sustains a blow to the head, the best way to recover safely and more quickly is to shut your brain off and have no stimulation, such as light, conversation, TV, etc.) I would have thought to ask for definitions for certain medical terminology. I would have also researched more for support groups. I really felt totally alone. I would have also researched more cases similar to Macie’s.

CCN: What advice would you give parents who may find themselves in a similar situation.

Gina: Parents, do not ignore, if in doubt go to the doctor even without soreness and bruising to the head. Concussions are not visible. Listen to the doctor with an open mind. Ask any terminology you are not clear on. If you have doubts with your doctor, keep searching. Also, ask for doctor referrals. After Knoxville, we went to Vanderbilt to a Children’s Neurologist and Sports Neuropsychologist. From there, we went to Kentucky to another cardiologist. Listen to your instinct. Even though we had multiple doctors begin to say that Macie`s continued problem was depression and anxiety, I knew she had something wrong.

Macie Norrod shares her story of life with a traumatic brain injury in the hope that she may be an encouragement to others. Photo provided

Macie Shares Her Story

Though Macie still has a long way to go in her recovery and management of her TBI, she has chosen to share her story in the hope that she may be an encouragement to others. She has recently begun public speaking and was invited to speak at a Knoxville hospital and addressed Knox County teachers during their in-service as well. For anyone who has questions for Macie about her journey with TBI, she welcomes your emails. She can be contacted at macie.norrod@yahoo.com.

At some time during the past two years, Macie has exhibited all of the following signs and symptoms that the Center for Disease Control says are possible indictors of a concussion.

Concussion Signs Observed

Can’t recall events prior to or after a hit or fall.
Appears dazed or stunned.
Forgets an instruction, is confused about an assignment or position, or is unsure of the game, score, or opponent.
Moves clumsily.
Answers questions slowly.
Loses consciousness (even briefly).
Shows mood, behavior, or personality changes.

Concussion Symptoms Reported

Headache or “pressure” in head.
Nausea or vomiting.
Balance problems or dizziness, or double or blurry vision.
Bothered by light or noise.
Feeling sluggish, hazy, foggy, or groggy.
Confusion, or concentration or memory problems.
Just not “feeling right,” or “feeling down”.
The CDC also states that, “Signs and symptoms generally show up soon after the injury. However, you may not know how serious the injury is at first and some symptoms may not show up for hours or days. For example, in the first few minutes your child or teen might be a little confused or a bit dazed, but an hour later your child might not be able to remember how he or she got hurt. You should continue to check for signs of concussion right after the injury and a few days after the injury. If your child or teen’s concussion signs or symptoms get worse, you should take him or her to the emergency department right away.”

For more information on concussions or traumatic brain injury (TBI) visit the Center for Disease Control website, section Heads Up at https://www.cdc.gov/headsup/basics/concussion_symptoms.html or visit the Sports Concussion Institute website with resources for athletes, coaches, parents and teachers at http://concussiontreatment.com/

July 21, 2017 CCN Article by Rebekah Hurst, Photos provided by Macie Norrod, reposted with permission