Tag Archives: Moyamoya

Two Decades

This past Sunday was a momentous anniversary for me- the 20th year anniversary of my first stroke. TWO DECADES!! It’s wild.

While it was heavy on my mind, I didn’t focus on my personal situation on Sunday since it was my son’s First Communion. I couldn’t think of a better celebration/distraction than his special day. And it was lovely- a beautiful day of faith, hope, grace and love. And in that way, as I look back, this dreaded day twenty years ago was also filled with faith, hope, grace and love.

My son on his First Communion Day

I still think about May 7, 1997 with a myriad of emotions… sadness, regret, unrealized dreams, and lost opportunities but also gratefulness, appreciation for life, deep emotional connections and continuous hope.

I have been mentally dwelling on this anniversary for the past few months. Mostly because I wanted to have a book written by this date…but that was just an arbitrary date set…and I am happy to report that I am working on a book, so hope it comes to fruition soon. (Add inspiring author onto my resume!)

I look back at that day the week before college graduation when I heard the words, “You’ve had a stroke.” I see my frazzled Mom arriving in my Washington, DC hospital room after an emergency rushed flight from Rhode Island. I remember all the friends who stopped by the hospital to bid me well even as they were on their way to our Booze Cruise Senior Week celebration, which I was supposed to be attending. I recall walking into the tan, sterile Emergency Room alone and noticing the sign listing the stroke symptoms- and realizing that I had all of them. I remember the friends who dropped me at the hospital and sat with me through the procedures and terrifying news. Mostly, I recall the fear of a stroke diagnosis, the throbbing pain of my headache and numbness of my left side, and the awful spinal tap (performed by a student doctor who had never done one before and missed my spine three times!) which diagnosed my stroke.

Lisa’s college graduation.

I also embarrassingly remember how naïve and optimistic I was about my life before that day and still struggle with that sense of loss. Until that point in my life, I had always worked hard to be an overachiever. I always gave it my all in sports, studied hard and received almost straight A’s in school and worked throughout school to be financially sound. I even worked really hard at having fun in college. I didn’t have a passion or purpose but know I was set up for success. I was ready to jump into the business world and give it my all. I literally had a start date ready at Andersen Consulting. I even had a tentative life plan…work a little while at Andersen Consulting (hopefully traveling to see the country) and then go get my MBA. I had California in my mind for that. I assumed I would get married one day and have a family. I never planned to be a stay-at-home Mom but I would be a good Mom. I just had this plan that I was ready to tackle life and have fun.

I didn’t even know it at the time but those dreams went out the window on May 7, 1997 with my stroke diagnosis. I mourn this loss- still to this day. I do a lot of wondering what could have been, should have been or might have been. However, I am older and wiser so I know that life happens while you’re busy planning. God had a different plan for me and despite kicking and screaming against it, I am living His wonderful, perfect plan.

Our family today.

I have learned that I am exactly where I am supposed to me. My life is just what it is supposed to be. I am married to an amazing husband and have two kids who literally make my heart burst (with joy most of the time…;) I don’t have a career but I have a fulfilling, passion filled life that I have created despite my limitations. My life of advocacy and volunteerism has more meaning than I could ever have dreamed of. I am here for my children; I help other survivors and patients; my story inspires others facing adversity; and I most importantly, I am here.

Twenty years ago I never would have believed you if you told me that I would go on to have four strokes, two brain surgeries, two rare disease diagnosis, chemo, menopause, trouble speaking, occupational therapy and many TIAs …but also a wonderful, loving family of my own, a safe nice home and fun beach house with my parents, a “job” where I get to speak to hundreds of people, a blog, a non-profit organization, life experiences through travel and the best friends and family I can ask for.

I don’t say this all to brag, but to remind myself that life is good. I mourn the loss I experienced twenty years ago yet appreciate the ride that life has given me. It hasn’t gone as planned but with acceptance and patience, I am living God’s will and cautiously celebrating twenty years of overcoming!

 

5 lessons learned; Reflections a Year After Brain Surgery

Today is a day of reflection. It marks the end of May (which was stroke awareness month) and leads into tomorrow which is the first anniversary of my first brain surgery!

I’ve looked back at the notes, messages and support from last year at this time and I’m just overwhelmed with emotion. I thought I would take a moment to review what I’ve learned during this past year. I hope my reflection serves as a Thank You to all of you who supported me AND reminds you to reflect on such lessons in your own life.

Strength

I have learned that I am braver than I thought. When faced with the tough decision of undergoing two brain surgeries, I made the decision firmly and with determination….and a little help from my friends and family. I was terrified but knew this is what I needed. Now, a year later, I see that it was the right decision.

Support

I don’t have the right words to adequately express how much and meaningful support I received this past year. My family, friends, community, old classmates, old teammates, my kids’ school, Brian’s work, American Heart Association colleagues…the list goes on and on.  I truly think that I had the biggest army of supporters ever 😉 I could write a book about ways to help somebody going through a tough time only because I experienced such amazing acts of kindness firsthand. Thank you #teamLisa. I will never forget what you did for me and my family.

Anxiety

I learned what anxiety feels like and how challenging it is to live with. Pre-surgery, I was fiercely optimistic but had many anxious thoughts and what ifs about dying. Post surgery, I was afraid to get back to life and didn’t have trust in my body. Losing my speech and suffering from TIAs were super scary. I felt nervous and anxious to do simple things like school pick up. I still have some anxious thoughts but I have come along way. I have gained a new understanding of people who suffer with anxiety on a regular basis and have become more empathetic.

New purpose

I have been a volunteer for the American Heart Association and the American Stroke Association for years but this past year has given me a new story to share with others.  In just the past few months, I have been positively rewarded with various opportunities to use my experience for good.  I served as a keynote speaker at the Go Red for Women luncheon in Boston and even filled in as a Passion Speaker at the Providence Go Red for Women luncheon. I flew to Atlanta to be part of the #StrokeHero campaign photo shoot and I was featured as the face of Alex and Ani’s Wings of Change stroke awareness bracelet.

I also became involved with a new cause, my new disease, Moyamoya disease. Never have I seen such a devoted group of patients,caregivers and doctors as I have found in the Moyamoya Facebook community. I was honored to represent this disease population when I attended Rare Disease Week in Washington DC.  I have lobbied at the State Level to increase awareness of Moyamoya Day and also hosted a small party for other local patients. Being able to take part in these activities and giveback has given me a new sense of purpose and a reminder of how amazing I feel when helping others.

Love

The most important lesson I have learned is recognizing what is important…which is love. I am blessed with tremendous, unwavering love from my family and friends.  I didn’t need to test that strength…but life-threatening illness will remind you how important you are to someone.  May each of you find such deep, thoughtful and compassionate love and friendship in your life like I have.

Today is World Moyamoya Day!

I first learned about the word Moyamoya just over a year ago after suffering my fourth stroke.

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Unfortunately, I learned that Moyamoya means “puff of smoke” in Japanese because the blood vessels in my brain looked like this during an angiogram.

After my diagnosis, I learned that there is no cure for Moyamoya disease but that the recommended treatment is surgery. Last June, I underwent two brain surgeries (a week apart) to augment the blood flow in my brain. Fortunately, despite some speech difficulty, pain and much anxiety, I had successful surgeries.

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I owe so much to my fellow Moyamoya warriors who supported me virtually (and in person) to get through my ordeal. Since my surgeries, I have become a vocal advocate for raising awareness of Moyamoya disease.

While not quite official, Moyamoya patients have started a movement to declare May 6th as World Moyamoya Day! I am proudly taking part in the day this year and asking all of you to take a minute to educate yourself.

May 6 day

According to the Stanford Moyamoya center, Moyamoya is a disease in which arteries in the base of the brain are constricted, restricting blood flow. Fragile blood vessels proliferate around the blocked artery in an attempt to bypass the blockage.

Without surgery, the majority of individuals with Moyamoya disease will experience mental decline and multiple strokes because of the progressive narrowing of arteries. Without treatment, Moyamoya disease can be fatal as the result of intracerebral hemorrhage (bleeding within the brain).

I consistently focused on this fact leading up to my decision to undergo surgeries. Despite it being a terribly difficult decision. I know I had to have surgeries!

Fortunately, I had the support of family and friends that allowed me to travel across the country for almost a month to have my surgeries with the most experienced, best adult neurosurgeon in the country.

Thank you again, #TeamLisa and Dr. Steinberg!

IMG_8206 Team Lisa

Knowing what was to come with a progressive disease, I was anxious to have the surgery and pleased that all went as expected. It was certainly a challenging, scary, anxiety-ridden, painful time but now just 11 months later, I am well.

Today, I join with other Moyamoya warriors to raise awareness and count our blessings. I’m so fortunate to have been connected to the most supportive group of patients I have ever met. Since there are so few of us in the United States (Less than one in 100,000), it was so comforting to have people to speak with before, during and after the surgeries.

Making the correct diagnosis seems like the most problematic part of Moyamoya Disease. If a patient suffers too many strokes, surgery may not be an option. Raising awareness of this disease and educating patients, EMS, hospital staff and doctors of this disease will ultimately lead to more correct diagnosis and better treatment. Help us help others!

To honor the day and create awareness of #Moyamoya, I ask you to change your profile photo on social media to this and hashtag #WorldMoyamoyaDay:

World Moyamoya Day

Today, I will spend some time reflecting on my good fortune to be on this side of surgery.  I am thankful that someone was able to diagnose me correctly with this disease. I am lucky my surgeries went well. I am fortunate to be feeling strong and finally emotionally stable. I am blessed to have a community of other Moyamoya warriors.

Pease join me in recognizing World Moyamoya Day!

Flashback…What would the angiogram show?

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.

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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.

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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.”

Angiogram machine

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!)

Mr. DeedsHe 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.

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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.

Flashback…Feelings during the wait for a plan

This is what I am happy to share…some of my writing from last year that really gets to the heart of my situation. My journal, while my life line last year, is enlightening to look back on…

At this point last year, I was out of the hospital and having various appointments to follow up on my fourth stroke. I had reassuring appointments with two doctors but was still having the heaviness in my left arm and leg without an explanation. Those doctors reiterated that I was a complicated case and that it was possible that I would never find out what was causing my symptoms to show up again. I was laying low until my scheduled angiogram on April 7th that I hoped would show insight. Here’s what I was thinking at the time…

Deep Thoughts photo

“Why won’t my left side come back? I need it to “un-numb.” The frustrating fact of illness is that positive thinking can’t make it better. Working your hardest doesn’t guarantee anything. Isn’t that the kicker in life?? I think so! Generally speaking, hard work and perseverance pays off. That isn’t always the case with illness. I can’t stand that my left side is numb. It is also frustrating that it’s a total subjective feeling at this time. The docs certainly believe me especially given my pass but it’s not obvious…to them, to others and even to the basic medical tests.

I’m not like everyone else; this is a difficult and a tough lesson to learn. Not in the sense that I am comparing my accomplishments or looks or any of the things that women often do (but shouldn’t)…but in that my body isn’t the same as most people. I think I have gone so long feeling well and not having any issues that I started to forget that I’m unique.

I’ve only heard of a few other people in my life who have this feeling of left sided heaviness/numbness/ache. I think many stroke survivors have this feeling yet it’s amplified and renders their limb unusable. Some MS patients have this feeling intermittently.

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Then there’s me…CNS Vasculitis patient whose symptoms mirror Moyamoya disease. Still a rare disease and one that every single doctor I meet questions. Yet, I have gone 14 years without major symptoms. So, I started to think I was like everyone else. I dove back into life with a passion to do it all. After all, I seemed fine. I look like everyone else, I have a similar family to many, I enjoy doing the same things as my friends. BUT I AM DIFFERENT. My body reacts to stress, medications, exercise, food, etc. differently then others. My left side goes numb when I do too much.”

I was still resting at this time, so grateful for all the support of meals, cards, etc…and hugging my kids super tight since I didn’t know what the future would hold.  What a rollercoaster of emotions!

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Same feelings but not the same trip!

Everything this year reminds me something about my brain surgeries. This is my new reality.

For instance, I’m currently on a plane taking off from TF Green airport and I am feeling excited for my trip. Yet deep down, I am panicked as it reminds me of taking off from Boston last year to go to California for my brain surgeries. I’m looking out at a beautiful sunny day (just like last May) as the plane lifts off and am breathing deeply to stay calm. This trip has no similarities to that terrifying one (except leaving the kids) but I can’t help but to reflect.

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I was so petrified to go to California. I stayed positive but didn’t know if I was going to make it. I didn’t know if I would keep my speech or lose functionality of some part of my body. I would miss my kids terribly and worry about them the whole time. I’m tearing up and craving a Xanex even as I type this. Oh it was heart breaking.

Today, though, it’s a good trip. I am leaving to go to Washington, DC- my old home where I lived for fourteen years. I’m going early to see one of my best friends and her new baby. I’m catching up with my maid of honor and having a small reunion gathering of American University friends.

Most notably, I’m taking my scary new diagnosis of Moyamoya disease and double brain surgery survival story to a new place. I’m joining the other rare disease advocates to attend Rare Disease Week on Capitol Hill. I’ve been a heart disease and stroke advocate for years but this rare community is brand new to me.image

I’m nervous to break out of my comfort zone and meet all new people…but excited to hopefully meet some patient peers with whom to compare notes and to make a difference. That always makes me feel good!

I’m also honored and thrilled to be able to bring Moyamoya awareness to Capitol Hill.  The Moyamoya community is passionate, supportive and fierce- so being coincidentally being a representative for them is such an honor. I hope I do them justice!

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It’s all a mental game for me. I am not off to surgery. I am heading to have fun and do something that is going to make me feel good- feel like I am contributing to a better world for patients and their families. I am leaving my children with my husband and parents which is fun for them. I am turning something challenging into something meaningful. ❤️