August 5, 2017 was a typical night for my girlfriend and me: quiet dinner, just the two of us, followed by dessert at Amelie’s, a popular bakery in Charlotte, North Carolina. After arriving home, little did we know that the night was only getting started.
At around 1AM, Jessie awoke to my arm twitching. I told her I couldn’t move it, but we thought I had just slept on it wrong. A few minutes later, I realized I couldn’t move the entire left side of my body. This was coupled with a noticeable facial droop. Panic started to set in, and neither of us knew what to do. Luckily, I had family close by, and my older sister came right over. The next thing I remember, paramedics were by my side and I was being rushed to a hospital.
The following few weeks were a blur. I’ve been able to piece the events back together with the help of family and friends. I spent six days in the ICU, another week in intermediate care, and was then discharged to a rehab facility to start intense physical and occupational therapy for my arm and leg. While I don’t remember much about my time in the hospital, I do remember one morning a nurse coming in and taking sixteen tubes of blood in order to try to get some answers. Some routine tests, and some sent off to the Mayo clinic for a more comprehensive analysis. Regardless, the tests all had one thing in common – they came back negative.
While I was hospitalized, countless doctors and nurses would enter the room and perform scans, MRIs, and other medical tests that I didn’t even know existed. The only consensus was that I had a right-sided intracerebral hemorrhage in the basal ganglia (structures deep within the brain, a common location for bleeding, although not in someone my age), which resulted in left-sided weakness. It looked like your classic brain hemorrhage caused by high blood pressure, or so I was told.
There was only one problem: I was a healthy 28-year-old man with no history of high blood pressure. My blood pressure was not even high the night of the stroke when the paramedics evaluated me.
Even after being transferred to the rehab hospital, more doctors came in, more tests were done, but no diagnosis was reached. The two weeks I spent at the rehab hospital were both challenging and eventful. In that 14-day time span, my nephew was born six weeks early and my grandmother was in and out of the hospital twice for her own medical reasons. My mom was a trooper, running around to three different hospitals and getting very little sleep. Despite this, I never spent a night alone in the hospital. My family, friends, and girlfriend provided me with more support than I could have ever expected.
After two weeks in the rehab hospital, I was healthy enough to return home and start my outpatient therapy. I had entered unable to walk independently, and I left walking with a cane. I was able move my arm a few inches side to side, but otherwise it was unable to perform any tasks. However, I knew the recovery process was just beginning, and I was told by many doctors that I could make a full recovery since I was young and healthy. Hanging on to that notion was reason enough to work hard and keep moving forward.
While I was still hospitalized, one of my neurologists highly recommended to my mom that we travel to Duke University to see Dr. Dodds in order to try and find more answers. Even though I was starting to accept the unknown etiology, I wanted to exhaust all options before throwing in the towel. Within days of arriving home, I told my mom to make the call to Duke. Little did I know it would be the best decision I’ve made in a long time.
Three weeks later, I made the trip to Durham with my mom, girlfriend, and brother and met Dr. Dodds. She looked at my images and noticed right away that not only did I have a hemorrhagic stroke, but I had also suffered an ischemic stroke as well. She felt there must be a unifying diagnosis to explain the presence of both hemorrhage and ischemic strokes occurring as part of the same event. We sat down for over an hour going through the weeks leading up to that eventful night. I had been sick a few weeks prior to the stroke, going to the doctor several times for headaches, fever, and a rash on the right side of my body. Dr. Dodds said she wanted to ponder everything for a couple of weeks, talk to some colleagues, and get back to us with more answers.
At 9AM the very next morning the phone rang and it was Dr. Dodds. She said it hit her very early in the morning, and she thought she knew what caused my stroke. “Brett, have you heard of varicella-zoster virus?” With little medical background, I told her I was not aware of it. She went on to explain it’s the shingles virus (which explained my rash), and she thought the virus may have gotten into my spinal fluid, causing the brain bleed and thus, causing my stroke. Varicella-zoster virus can infect the blood vessels of the brain, causing both brain hemorrhages and ischemic strokes. She said there were cases published in the medical literature of patients with this particular problem with MRIs that looked very similar to mine. The only real way to confirm her theory would be through a spinal tap.
Lo and behold, the spinal tap confirmed the unimaginable. The virus was present in my spinal fluid. Who would’ve thought? Shingles virus getting into my spinal fluid and causing a stroke? Of all of the possible diagnoses for a brain bleed, I felt very fortunate that at least mine was treatable. Unlucky to have experienced this in the first place, but fortunate. Since that time, I’ve been on two rounds of antiviral medication and will go in for my third spinal tap in a few weeks. The viral numbers came down on the second tap, and they were getting closer to the ‘negative’ range on that study.
After lots of PT and OT, I sit here today typing this story with both hands. I’m able to walk on my own, traveled to New York City last month with my family, and have started working with a therapist on getting back to jogging, playing golf, and hopefully returning to work eventually.
I share all this publicly for one very simple reason – DON’T STOP LOOKING FOR ANSWERS. It would’ve been easy for me to accept the unknown etiology and just move on with my life. However, I needed the answers, if not for myself, for my family, and everyone who spent countless hours by my side helping me through this difficult time.
Although my diagnosis is rare and may not be relevant to all, I encourage any stroke survivor without answers as to what caused his/her stroke to explore all options. Seek a second opinion. Ask if there are case studies published that might relate to your stroke. Don’t stop until you are satisfied. I found my answers, and with the right help and guidance, you might find yours as well.
Sam Eason says:
Jan 24, 2018
Thanks, Brett. Although I am much older, and have not been as adversely damaged as you, your advice to keep on searching is well given. I am in the process of seeing if I can regain my balance after two cerebellar strokes this past summer. I am profoundly deaf, but at age 80 do not want to go through a cochlear implant. I am hoping that Mayo Clinic Jacksonville can help me regain my balance
Nathan P. Thomas,Sr. says:
Jan 24, 2018
Thank you AHA/ASA for your continuous caring support for cardiovascular diseases and stroke awareness for the general public ( prevention and treatments). I appreciate your caring support.
Sonia Munson says:
Jan 25, 2018
Knowledge is power! Thank you for sharing your story. The more we know about the how’s and why’s of strokes the better armed we are for better life after. My mom was 34 when she had a stroke that they wouldn’t call stroke for decades later….I was 43. Still with no real explanation as to the possible why. Very little care or after care when it happened. I am fortunate that I can function tho’ affected long term from not having the proper care. I am now 65 and will go back to PT for another round of rehab to get my muscles back in tune. Have found a wonderful group that believes that there is still room for improvement after all these years. They rock!!
Sandie S. says:
Feb 28, 2018
What an inspiring story Brett. I never had a stroke but I am considered a high risk due to high blood pressure and family history. Your suggestion of ‘DON’T STOP LOOKING FOR ANSWERS” is encouraging. For the past year I have had trouble breathing at rest. Finally, after waking up at 4 am gasping for air I went to my PCP. He said he didn’t understand it. Blood tests came out negative. Never heard about the chest x-ray results. That was over a month ago. Anyhow, by way of another doctor I am going to a pulmonology and sleep study center and a cardiologist. I feel very confident that we are going to narrow down why I am having trouble breathing while sleep. My understanding is that sleep interruptions can cause heart attack or a stroke. Although, I do not have the results yet I feel confident that I did not stop at one doctor’s visit but pursued other medical means. Thank you again for your story.
Jean Marie says:
May 10, 2018
What an incredible story. My mother suffered a left hemiparesis stroke over 5 years ago and lost her speech and mobility but not her spirit. I started a foundation in her honor to also help others in raising awareness to the importance of fighting for answers. I wanted to know if I could use your story on my website. Your experience is certainly not the norm but very helpful for others. My site should be ready for launch in a few days. Its called Pathways Stroke Foundation, http://www.strokepath.org. In the meantime I have a facebook page that you could go to and see who we are. Congratulations on your recovery and thank you for sharing!https://www.facebook.com/Pathways-Stroke-Foundation-976884592324742/
Carlos J Zaldivar says:
May 13, 2018
My Stoke History:
** ** Survived a ischemic Stroke which affected my left side during June 28, 2008. Forty-eight (48) hours later had a Hemorrhagic Stroke on my cerebellum on the Pica area, and developed the Wellingberg Syndrome. **
I am a disabled US Veteran caused by the Stroke which occurred due to high blood pressure while working in Mexico City.
For a few days before the Stroke had a pain from the center of my head down my left side of neck to the middle of my back. Had to go to a doctor and he said it was probably a muscle spasm. Gave me a injection for the pain. Next day it started again and took many “Advils” (not good to do) to reduce the pain. That night I went to bed (no pain). At 3am woke up had to vomit went to bed. At 630am got up seemed normal strated getting dressed, suddenly Could NOT breath. Lifted my arms ask our Lord to help and suddenly was able to breath very little. Finished getting dressed fast went out and started falling on my left side. Luckily a neighbor saw me and took me to hospital.
** To make this short :
I was in Hospital 3 months and my father flew me to Miami VA. Had therapies and I had to put much efforts.
Now almost nine (9) years later, thank God I have recovered about 90% of my functions.
As a result of the Strokes had:
1. Traquea Tube to be able to breath (Windpipe). Was taken out after one year.
2. Feeding tube to eat, could not swallow. Have left vocal cord paralised. Tube was taken out on third year.
3. Neuropathic pains on my left side of face, right palm of hand, under right arm and entire under right leg all the way to my foot (on a scale from 1 to 10 and 10 being the highest. Average still have a 7). I could take more Gabapentin but it makes me go to sleep. Don’t want to sleep my life away.
You must NOT give up, get involved doing outdoor things you like. I have been horse back riding (specially trained horses and swimming with dolphins) I do exercises and continue with THERAPIES. HAVE MUCH FAITH
All Strokes are different and don’t let people get on your nerves. It’s Your LIFE
** I will continue with my items but I am waiting for a Stem Cell treatment to be approved in the USA by the FDA **
Sep 19, 2018
Hi Brett! First off I want to say that I am so happy that you are getting your life back! I felt compelled to comment because our stories are so similar! I suffered and brain stem stroke at the age of 31 (I’m now 34). I had no risk factors and even today I still don’t have a clear answer as to what caused my stroke; it could’ve been birth control, it could’ve been a neck injury that I don’t remember suffering. Either way, all of my tests were normal even after I had the stroke. I had high blood pressure at the time of the stroke as well but never had high bp before the stroke or now. However, I’ve been fighting to get back to 100%. I am still affected on my right side so I’m typing with one hand but I hope to be typing with two really soon. Like you, I went to therapy unable to walk and left with a cane!!! Thank you for sharing your journey. I know the journey is not over yet but WE GOT THIS!!!
Fear accompanies loss of control, in Covid-19 and in stroke - The Stroke Blog says:
Apr 15, 2020
[…] deaths in “young” celebrities impact us emotionally. Two years ago, stroke survivor Brett Patterson shared his story of searching for answers as to why he had a brain hemorrhage in his 20’s. He would be the […]
Julia Page says:
Jan 26, 2021
Hey Dr.Jodi Dobbs we are trying to find you Do not know if you remember Skyler Smith from Duke he had a massive stroke, a brain bleed, and surgery to remove a blood clot.you were one of the doctors we remember that helped him come to..he is such a miracle, he is now in nash general in rocky mount nc because he passes out at times this makes the fourth time..we would love for you to see him and give us some answers..my daughter is so very frustrated that nonone seems to help with what is going on…please if you are still working give us a call at 252-315-6862..or 252-907-3066 we are just so desiring to help him..his wife is Julie Smith a young couple…just so thankful for doctors like you..that truly help..God bless you..also my number is 252 291-5178..we are so looking forward to hear from you..or if know someone that can help us if you no longer work thank you
Jodi Gehring, MD (previously known as Jodi Dodds, MD) says:
Apr 13, 2021
Hello, and thank you for reaching out to me through this blog. I’m so sorry your family is going through so much. I transitioned into a role in 2018 that involves emergency stroke care for Duke and for another hospital system (Sentara), but no longer perform any outpatient/clinic evaluations beyond the emergency setting. I blogged about my decision to make this change in my career, if you’re interested in understanding more about it. https://strokeblog.net/2019/02/where-did-i-go/
The neurology department phone number is on the Duke Neurology website and should get you to the right place for scheduling an appointment with one of the neurologists there currently. I truly wish you and your family the very best going forward.