A year ago today was a huge emotional day in my journey through brain surgeries. Before this day, I hadn’t even entertained the idea of surgery. I knew the angiogram would be revealing but never expected it to tell me what it did…
I laid on my stretcher at Rhode Island Hospital waiting for my cerebral angiogram. I had been laying there for three hours since my procedure was running late due to some complications of another patient’s procedure. My nerves were on fire and I was very thirsty, hungry and impatient.
Peter, the goofy male nurse, tried to joke with me to keep the atmosphere light but all I wanted to scream at him was “Give me the meds!” I knew that the two medications the doctors planned to administer would take the edge off and deliver me to a “happy place” 😉 These medications would allow the doctors to perform the angiogram procedure which was what had me very worried.
Deep down, I knew the procedure was relatively routine yet even the worry about the possible complications consistently brought me to tears as I thought of my children. “What if something goes wrong and I can’t be there for them when they need me? “God forbid, what if I die and am gone?”
My husband and my Mom were at the hospital but couldn’t be with me during this wait. Alone, I struggled with keeping my mind off of the negative feelings. Luckily, I was a distracted by the constant poking, tucking, covering and positioning that the nurses kept doing in preparation for my procedure. Eventually I was wheeled into the operating room since it was almost time for my procedure.
The neuro-interventional radiologist who would be performing my upcoming procedure, Dr. Jayaraman, appeared out of seemingly nowhere. I often compare his quick appearing ability to the butler in the movie Mr. Deeds…”Sneaky, sneaky.” I knew he was coming to discuss my old MRI films with me.
I still have a collection of the big yellow and white envelopes filled with my black and white MRI films from 2001-2009. Many hospital staff members commented on the films as I walked through the hospital with them. Today, MRI results on CDs or flash drives. I truly looked like a dinosaur walking through the hospital with the big envelopes.
Dr. Jayaraman jumps right into his analysis of the films…”So, you have Moyamoya. It’s apparent on your films that you’ve had Moyamoya for a long time. Your first infarct happened prior your new stroke which isn’t consistent with Vasculitis….” He continued but I stopped listening there. It was 1:00pm. I had just been told after 18 years that I have a new disease. I have never been so shocked- EVER!
Fortunately, I had been administered my medications already which helped my reaction. But I immediately started giving myself a pep talk in my head: “Ok, Lisa, you knew an additional diagnosis was a possibility. Heck, you’ve heard the word Moyamoya mentioned before. However, he sure does sound confident of that diagnosis. I know this angiogram will determine it for sure.”
Since I battled health problems for over half of my life, I had begun quite adept at focusing on the positive. I continued my attempt at positive thinking. “But wait, I am okay with this. It is definitely shocking. I probably didn’t need to go through chemotherapy and prednisone for years… but I did and that’s my life. Without my CNSV diagnosis and three strokes, I would not have the life I have today. There is no way Brian would be my husband and my kids certainly wouldn’t be my kids. I hate that I had to go through it all that to arrive here again. But, I feel fortunate about where I am today. I truly believe that.”
I looked up at the clock and it was 1:15pm. I was staring at this random orange light bulb thing above my bed. I kept hoping that I would soon drift off to sleep when I felt the doctors beginning to work on my leg.”
That’s all I remembered until I woke up alone in the recovery area about 1.5 hours later.
I woke up thirsty- extremely thirsty. “May I have some water?” I whispered. One nurse finally brought me a glass of water. However, since the patient next to me was obviously suffering from complications, I was relatively ignored. I drifted in and out of sleep.
“Oh my…That diagnosis. Didn’t Dr. Jayaraman tell me I had Moyamoya disease? Was that a dream?” My thoughts started to plague me again.
I was also inundated with mundane thoughts such as the location of my husband and Mom, and how thirsty I still felt. I was contemplating my ability to move my leg again when Dr. Jayaraman did another an appearing out of no-where act (Sneaky, Sneaky!)
He jumped right into an explanation which I couldn’t focus on since I was worried about someone being with me to hear all this. Somehow, Brian sensed my need and appeared to listen to this life-changing news.
Dr. Jayaraman reiterated that I have Moyamoya Disease. (Still shocking to hear!) He proceeded to discuss next steps which included a meeting during rounds on Monday to discuss my case with my neurologist and a neurosurgeon since it’s so rare. He explained what Moyamoya is and how it’s very rare. He also mentioned the possibility of sending my films to Stanford where the premier Moyaymoya surgeon can review. He explained that he did his residency at Stanford in the Moyamoya Center- which is why he easily recognized this rare disease.
He delivered one final shocking blow: “I think you are a good candidate for a brain bypass.” Brian and I were in complete and utter shock. What?? Brain surgery?!
“A brain bypass could alleviate your symptoms but also increase a healthy blood flow to your brain which will be good. It will also prevent the risk of bleed due to your small vessels.”
Dr. Jayaraman was convincing and reassuring. Surprisingly I was left with a feeling of calm determination. Yes, brain surgery is scary but if it can lead to a better brain, why not? He also explained the risks and how it will make sense to do one more test before surgery.
There was more information that we listened to but somehow I felt relief. Yes, I was petrified about what the future help but Dr. Jayaraman’s confidence despite delivering me a shocking diagnosis left me feeling calm. I was relieved to know and have a plan to move forward. These results weren’t what I expected coming into my angiogram. But thankfully, I had experience in knowing how to stay strong despite scary, unexpected news. This is something I would need to rely upon going forward.