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MoyaMoya and Me!
I didn't have much of a story until this long, unexpected journey began on May 5, 2015. It probably began long before this date, possibly even at birth-however, it was unknown at the time. I had been experiencing chest pains for several months but really thought nothing of it. When my husband and I traveled to Las Vegas for my birthday in April 2015, I began to realize something was very wrong. My chest hurt the entire trip- I couldn't make it more than 50 feet before having to rest. We finished the trip and arrived back home safely, but the journey was just beginning.
On the early morning of May 5th, I awoke with severe chest pains- and this time, they didn't settle down or go away. Jay rushed me to the local ER and tests indicated I had a Myocardial Infarction, or a heart attack, at age 35. A stent was placed and I was released "good as new" with a thousand medications. August of 2015, after a relatively quiet symptom-free summer, I began having chest pains AGAIN. This time they were so severe I couldn't walk to the next room and required assistance to get around at work. I was taking, at this point, close to 30 quick-acting nitro pills per DAY. Again, we went to the hospital and tests were run- I was not having an acute heart attack this time, but testing showed my stent was almost 100% blocked. I had a single bypass (open heart surgery) 9/12/2016. This went off well- recovery took much longer than I expected, but I returned to work full time in November.
May 18, 2016: I was having a pretty normal day and was visiting the on-site clinic at my work- the week prior I had been admitted for chest pain but was discharged and was at the clinic that day getting released back to work. When the nurse took my blood pressure she commented that it was high and that I should rest a moment before they tried again. I laid down, she turned off the lights and left the room. About 20 minutes later the doctor entered to re-take my blood pressure- it was even higher, an "alarming reading." The doctor asked me to close my eyes and raise both arms. I did as I was told and confusion struck when he said "Mrs. Parker, I need you to raise both arms." Well, unfortunately, this was a problem because I HAD raised both arms. Dread filled me when the doctor asked me to open my eyes and my left arm was, in fact, hanging lifeless by the side of the table.
Things happened very quickly after this. The clinic staff called 911. When EMT's arrived a few moments later, I had facial droop, left sided paralysis and slurred speech. I began having difficulty remembering phone numbers and names. They took me by ambulance to a Fort Worth hospital. I was diagnosed with Ischemic Stroke. Luckily, the ER staff was extremely efficient and administered a drug to reverse the effects of stroke- a clot-buster. I believe this drug helped save what is left of my left-side motor function.
Long story short(ish), further testing during this admission revealed that I have a relatively rare condition called MoyaMoya Disease or MMD. This is a neurovascular condition that causes tiny blood vessels to form when blockages restrict blood flow to the brain. These tiny vessels become an "alternate route" for the blood, but they are fragile and extremely susceptible to blood clots or aneurysms. I have Bilateral MMD, meaning MoyaMoya vessels have formed on both sides of my brain, which means the blood supply is restricted and in danger.
Surgery is the only known treatment for this condition- a Neurosurgery in which a bypass is performed. Incisions are made from just in front of the middle ear to the top of the crown and the surgeon takes a vessel graft and carefully reroutes the blood flow in the brain. My right side bypass was performed on July 8, 2016. My left-side, the tricky side, will be performed on October 7, 2016.
My journal updates will include a little about the daily disease process and give you a in-depth look at how different MMD can be between diagnosed individuals.