Recently, I have shared with you successful stories of "inoperable" brain surgeries, as I know how much of a God sent it is to find people who have gone thru this, and despite the long road to recovery, they not only survived the surgery with very good promises for the future, but they got their life back. As my title says, this is the courageous Story of Jamie,
a beautiful, healthy, young pregnant mom of 3.
She suffered a stroke without even knowing what caused it.
Being pregnant when diagnosed, surgery was automatically out of the question. I want to share her inspiring and incredible journey.
Being pregnant when diagnosed, surgery was automatically out of the question. I want to share her inspiring and incredible journey.
Jamie, I pray with all my heart that you will never have another bleed again.
Thank you so much for sharing your story with us.-----------------------------------------------------------------------------------------
Hello, My name is Jamie. I am from Iowa. I am blessed to have an amazing husband, Patrick, and three, soon to be four (April 8, 2014), beautiful daughters; Seeri (6), Jaelyn (4), and Linden (2). I am a PE teacher at the local high school.
On October 25, 2013, I suffered a stroke in the Pons area of my brain stem at the age of 32 while 15 weeks pregnant with our fourth daughter. I was in the best physical condition of my life and ate very well. All my blood work was exceptional and my blood pressure and heart rate were very low. Before this incident, I was completely healthy. Needless to say, the stroke came as a complete shock to me, my family, my friends, and my doctors. My original MRI did not reveal the cause of my bleed because the blood impeded the view of what was behind it. So, my doctors had to wait until my follow-up MRI on December 26, 2013 to get a closer look.
I was in the ICU at the U of I Hospitals in Iowa City, Iowa for 2 ½ days before I was transferred to their stroke recovery floor for 2 ½ days. I was then transferred to the Covenant Rehabilitation Center in Waterloo, Iowa. I spent three weeks there. I tested out of speech therapy after two days, but completed three weeks of extensive occupational therapy and physical therapy. I went to a skilled nursing facility after in-patient to test my ability to be more independent before heading home to my busy house. I quickly realized that I was physically, mentally, and emotionally ready to return home. I completed two months of outpatient occupational and physical therapy after returning home.
After my stroke, I took to Facebook to journal updates about my condition to my friends and family. They eventually started to encourage me to write a book or a blog. After much consideration, I decided to begin a blog. It was the perfect way to express my thoughts, keep a journal that my family and I would have forever, and possibly reach others who have a condition like mine. My first Facebook post was a simple thank you to all who had prayed for us and stepped up to help us in our time of need. I mentioned in my post that everyone who had helped us had motivated me to “Do Better. Be Better.” That personal slogan of mine resonated with many and has since "stuck", hence the name of my blog. My blog chronicles my recovery from my first CavMal bleed on October 25, 2013. I try to be as honest as I can about my symptoms, my recovery, and my feelings throughout this crazy journey I am on.
(also on the top tab bar of this blog: "Do Better. Be Better")
Below I have listed my deficits at the onset of my stroke:
My head: I had tingling in my face from my nose down and my left ear had hearing loss. I could not chew food on the right side of my mouth because it was like my jaw didn't move right. I would look at items with my head shifted to the side thinking I was looking straight ahead. I had facial droop on the entire right side of my face that my doctors called "slight". I would have classified it as major.
My eyes: My right eye was affected by my stroke. When asked to "follow my pen", my right eye would not move past midpoint and would cicade or bounce. My vision was like looking through a kaleidoscope. I went a week and a half refusing to wear anything to correct my vision. I wanted to challenge my eyes so that they would get stronger faster. Eventually the nausea I experienced constantly became too much to handle and affected my therapy too much. I first got a solid eye patch and when one eye was covered; my vision would be clear and normal. I would switch it from eye to eye. About three weeks after my stroke, my right eye began to turn in completely towards my nose. Four weeks after my stroke, my patch was replaced with a film. This allowed for more light to reach my eye and did not impair my vision as much. Two months after my stroke, I received a prism for my lens. My prism is a sticker on the inside of my lens that refracts light to stop my double vision.
My left arm and left leg: My arm and leg were extremely stiff, heavy, and hypersensitive. I could best describe them as feeling like tree trunks laced with nails. Anything that touched me felt like ice and would send intense tingling down my body. Since I felt so heavy, I would tip to my left side and my balance was severely impaired. My sensory input was also impaired. If my left arm/leg was put in to a certain position while my eyes were closed I could not mimic it with my right side. I could not tell whether my extremities were bent, straight, resting on something, covered, etc. unless I was looking at them. If I was asked to close my eyes and hold my arms, palms up, straight out in front of me, I couldn't keep my left arm still like I was supposed to. The crazy thing was, I had no idea it was moving! I also could not touch my left pointer finger to my nose to someone else's finger. My hand/arm would waiver all over the place and I could not pinpoint my touch. Everything, even as light as a fork, felt like it weighed fifty pounds. I could not tell how much pressure I was putting on my arm or leg so I would fall if I was resting on my left hand or forearm. My hip would drop out or my ankle would roll out if my weight was on my left leg. I really had to learn how my muscles flexed and where my pressure points were so that I could mimic my right side and reteach my left side how to move.
My left hand and foot: My hand was useless. My fingers felt like wooden spoons. I couldn't pick up anything. If I did pick something up, it would take SO much focus and I could maybe hold it for five seconds before I would drop it. My in-hand manipulation, the ability to rotate things in your hand, was non-existent. I would have to move my entire arm in crazy ways to try to place something how I needed to. I could not move my fingers separate from one another. They would always move as five. I had virtually no sensation. Unless I was looking at it, I couldn't tell its shape, texture, or size. For example, I couldn't tell if I was wearing my wedding ring or not. I couldn't tell if my fingers were bent or straight. My foot was much the same. I still had good mobility but I couldn't sense when I was hitting the floor with my heal, my toes, or the side of my foot. Unless I looked, I wouldn't have been able to tell you if I had socks or shoes on. I had to really focus on how my leg moved and pushing my big toe to the floor so my ankle was protected.
On December 26, 2013, I found out that my stroke was caused by a cavernous malformation cavernoma (CM) located in the Pons of my brain stem. My bleed was nearly 2 cm in size which was very large and filled most of the Pons. My MRI scan also showed evidence of old blood, so more than likely it had bled before without producing symptoms. This is the only CM I have; the rest of my brain is "clean," and as a result my doctor does not believe it to be genetic or familial. After extensive research into my and my family's medical history, it is believed that my CM is a result of my "shitty luck." Currently, much of the blood from my bleed has been reabsorbed back into my brain and healthy brain tissue has begun to form around my CM. Patrick and I have decided not to have surgery to remove it. The rarity of my CM, the location of it, my current pregnancy, and the uncertainty of my quality of life afterwards were all determining factors in our decision. If it were to bleed again, the blood would push the healthy tissue away from my CM providing a much clearer and safer look and path to my CM for my surgeon to remove it. I will pursue surgery by Dr. Spetzler of the Barrow Institute if I bleed again. I am not going to allow myself to suffer through numerous bleeds. I would rather have surgery, never worry about it again, and focus on living and accepting my new normal.
Today, March 25, 2014, I celebrate the 5-month anniversary of my stroke. My deficits as they are today are as follows:
Memory/Cognitive Functioning: Was never affected by my stroke and still remains intact. Thank goodness! I do not ever want to stop being "me."
Head/Neck/Left Ear: Movement and functioning are all completely normal and 100% functioning. I have not had dizziness since week one of recovery and with the exception of the day I ended up in the ER, I have never had headaches. Even the one I had was slight. I would actually describe it as feeling pressure in my head rather than an ache.
Right Eye: I have moved down to a 20 (started at 30, then 25) in prism strength to correct my double vision. I see so much clearer because there are not as many grooves in the stick on prism as were in the other strengths. I can still see them at times, but my vision is much improved. We go back to the neuroopthamologist on May 19. I pray every day that I will be able to wear contacts by June 1 because I hate wearing glasses in the summer heat. BUT, if the worst I have to deal with is glasses, then I will take it! My right eye is still not mid-line but it is only slightly closer to my nose. You would have to really look at me to notice it. My right eye, from what everyone tells me, blinks normally and tracks pretty dang close to normal. Without my glasses, I still see double. However, there are times when I am not sure if I am seeing double or just blurry. If I look at something, the double image is to the left of it. That double image is right next to it and I only see the outer left edge of it. The image fades in clarity and leaves a few inches of space between itself and the actual image.
I can see up to about two feet in every direction singularly. If I focus extremely hard on something I can usually get it to go to a singular image. However, it takes A LOT of focus. My neuroopthamologist says I can do this because 1) I am retraining my eyes and brain to communicate. 2) My right eye is my dominant eye and it really wants to remain dominant.
Left Arm/Left Leg: Both my arm and leg function at about 95% and feel about 90%. I would not be able to run, jump, or lift weights. BUT, I can do everything else at pretty close to the same speed I always used to and I walk completely normal. My movements are much more natural and fluid and my strength is probably at 90%. When I flex my quads, my left feels pretty close to my right. My balance is probably at 95%. My growing belly contributes that that a bit! I never worry about falling. Both my left arm and leg still feel stiff, especially my toes and fingers. When I get fatigued they become stiffer. Or if Patrick gives me a back, neck, or foot massage they feel stiffer. Picture your extremities having dried wax on them or arthritis without the pain and I think you would be able to relate to what I feel. People would no longer be able to notice the deficiencies on my left side, but I can feel them. My sensation in my leg and arm is probably at 95%. I can tell now when I am on my toes or heals and I can feel how much pressure I have on my elbow, wrist, hip, knee, and ankle.
Left Hand: My fine motor function is at about 90%. There is nothing I can't do, it just may take me a bit longer and require a little more focus. My hand and fingers are moving much more naturally. I sometimes just need to remind them to curl rather than stay straight. They respond correctly when I remind them, but I never used to need to remind them! I can type at about 80% of what I used to. It is difficult because my pinky finger and ring finger still are a little disobedient and like to work as one a lot. I do not think my sensation has improved much in the last two months. It still feel things like you would if you were wearing thin gloves. I can feel my wedding ring on my ring finger a bit more but still not enough to trust knowing if it would ever fall off. So it stays on my right hand!
Stamina: My stamina is great! Any tiredness and discomfort I feel is from my pregnancy and the daily changes my body experiences. I did go on a walk with the girls last week. I was wearing winter boots, pushing Linden in the stroller, and walking a few hills. We went about a mile. I took it very slow and could definitely feel the fatigue in my left side. Everything just becomes much more stiff when I tire. On the positive side, my heartbeat remained low and I never became short of breath, lightheaded, or dizzy.
So how do I feel?
GREAT! My eye is the only thing that makes me feel sick or disabled. I think it bothers me still because it's the only deficit I have that others can notice. When I am around those that know my story I am not bothered by my eye. But when I am around complete strangers I feel like they are trying to figure out what is wrong with me. I understand that I could be crazy thinking this, but I can't shake the feeling. It makes me want to start every conversation with, "I had a stroke in October." just to get the awkward tension out of the way.
Other than that I feel strong and healthy. I am so unbelievably happy and feel enormously blessed because of the AMAZING people I have in my life. Yes, there are moments when I am overcome by fear of the what if's, but 99% of the time I am just trying to do my best to enjoy my second chance at life that I have been lucky enough to receive.
And then there is baby #4. In 14 days she will bless our family with her arrival. Other than obviously having a stroke, this pregnancy resembles my other three. Same symptoms, same weight gain, everything. She has been insanely easy on me considering I have been absolutely awful to her! I am so ready for the moment when I hear her first cry, when she is placed on my chest, and I can kiss the soft skin of her forehead. I don't think I am ever going to want to stop holding her. I am just so ready for the feeling of overwhelming joy. I have never been more excited or more ready to meet one of our children.
The last two months I have not experienced the major improvements that others would notice like I did the first three months. But I consider becoming more "natural" in my movements a major accomplishment. It means my body and my brain are starting to coexist again and there is nothing better than that. Most importantly, I am slowly transitioning into accepting Jamie 2.0. I am beginning to find peace with what has happened to me and learning to regard it as a blessing rather than a curse. This mental and emotional shift has sky rocketed my improvement.
Thank you for reading!