More Than Conquerors - My Moyamoya Journey

Some people have been curious about my scars so I am posting here.  As a patient at Stanford, the largest Moyaymoya Center in the US, I am blessed to have access to one of the best and most experienced Moyamoya surgeons in the world. Dr. Steinberg completed over 180 of these surgeries last year alone and has been treating Moyamoya surgically since the 1990s.  The difference in my surgical experience from 2012 to now was dramatic. In 2012, my surgery was scheduled to take 6 hours...it ended up taking 8.  I was conscious but had no memory of anything until the next morning. I woke up in ICU still pretty out of it and after trying to eat and get up on my own (2 things required to get out of ICU) I ended up throwing up. I was in the hospital for 3 days post op and had a a big line of staples in my head. Fast forward 7 years. My surgery predicted to take 6 hours ended up taking a little over 4. I was not only awake, but ate dinner and talked story with Bobby & Sara...

Hi everyone! Apologies for the lack of updates! Bobby and I flew home on Tuesday the 15th. We were up early for a 7:30am flight which worked out perfectly because we got home around 10:30 am, had time to grab Zippy's and then take a long nap! Then we surprised the boys by picking them up at school. I think that was the best medicine I could have asked for! The next day, I accompanied Bobby on morning drop offs, went for coffee with him to start our day and then hung out at home. After school, I went with dad to pick up the boys and even cooked an easy dinner for all of us! I'm not too great at gauging my energy and ended up pooped out on the couch! Don't worry.... I was tired but otherwise totally fine. Praise God, it seems like headaches and other symptoms are fading away! Dad took over bath time and Bobby came home in time to put the boys to bed.  I saw my cardiologist on Thursday and got a good report from him. He said my heart seems to be doing well and ...

Oh my goodness everyone, I am so sorry for neglecting the blog! I've been RESTING up and healing this past week.  A quick update:  On Tuesday I had my post-op check up and MRI.  Everything looks excellent and I was able to wash my hair!  Bobby and I also took a SHORT trip to Trader Joe's for some snacks on Wednesday and were able to have brunch at a small cafe this morning.  I also got the results of my neuropsych work up (pre-surgery) and thankfully the restricted blood flow did not affect my cognitive functioning at all!  My blood pressure continues to get more steady and I am weaned off almost all the post-surgery meds; I have just one more to wean off of and I will be back to just 2 pills a day (which I will take for the rest of my life)! Finally, the stitches will come out first thing Monday morning and we get to come home on Tuesday!  Clean Hair! Wow....God is good isn't He?  And through all of this He has been teaching me a few th...

Before and after.... I wanted to get out of the house and instead pushed it a little too far. Half way home, I couldn't get the words to come out. It resolved in a few minutes followed bu numbness in my fingers and face and heaviness in my legs. We called Stanford and they told us to come in just in case (the neurosurgery resident was not available). Right before my language disappeared  The ER was super busy but we got seen immediately. A CT and EEG at the ER ruled out stroke and heart problems.... So it's just my brain rebooting. The plan was to get me hydrated and send me home. What should have been a simple IV to get me hydrated ended up taking over 3 hours because they IV was placed wrong. Multiple attempts helped briefly but were unsuccessful and when they finally got it started it ended up slipping and hurting...and I developed more edema. Bobby was NOT happy at all! Three hours to run a single bag of saline!  Finally after hours we got the doctor to agr...

Well... We are all settled back into the house we are staying at. Mom got to stay Wednesday and Thursday night and Sars spent the day today. It was a pretty chill day... Lots of baseball on TV and just hanging out. Mom did some shopping this morning and I got some walking in. My blood pressure has been higher than usual (and that's OK), but my heart rate has been pretty low and worrying. I woke up last night pretty swollen in the feet, hands and face... But it's getting better and probably my body shedding water from all the IV fluids. My cankles.... Eew!  I talked to Stanford and they  don't think it's an issue because I am non-symptomatic, but I'll need to keep monitoring for any problems. So far me speech continues to hold up and I'm feeling OK.  Dad also said they boys had a good night last night and are doing well. They are definitely missing us, but the support & love from everyone has made a huge difference! Our next door neighbors hav...

So, it was an uneventful night last night. Mostly just a few check ins from nursing staff. Dr. Steinberg's team did rounds during breakfast and have begun working on discharge orders. I should be out of here by noon. So far, I have taken all my meds and got unhooked from my machines. They will hopefully pull my last to lines in the next hour or so. I am sitting in a chair and Bobby & Mom will be here shortly. It was a late night and mom flew all day yesterday so we wanted to make sure everyone got rest! One of my docs, a medical student named Bobby, pulled the random staple in my forehead and the dressing. So now you can see my incision. They used nylon stitches instead of staples, but it still looks like an earthworm stuck my head! 🤣🤣 Lori came up with that description after my last surgery and it's totally true! Sorry for TMI.. but it looks ok!  Looking forward to getting out of here. My roommate is kind of grumpy and I am looking forward to some peace and qu...

Hi everyone! I'm back to blogging! Yesterday was pretty up and down in ICU. I felt pretty good but we just couldn't get my blood pressure where we wanted it. The ideal post bypass BP is in the 130s over 80-90.  As they weaned me off the IV meds to prepare to move out of ICU, mine kept dropping.... Sometimes under 100.  My awesome nurse Heather noticed that when that happened I would have some nausea and get super sleepy. So she kept in touch with the team and they put me back on the IV at a low dose. But as the day went on, the neuro team felt that I am OK at a low blood pressure and made the decision to look at symptoms rather than the numbers. Of course that wasn't easy for us to get on board with because we still have worries about language. Heather was cautious too and worked with us to wean off the meds at a pace we felt OK about. Seriously good nurses are the best part of the recovery process. She and Ilana (another nurse) took great care of me all day and I felt ...

Dana is doing well and she will spend the night in ICU, her nurse Biji was amazing and will be with her until 7am. Biji said Dana is doing good and that her goal tonight will be to keep Dana’s blood pressure high to help blood flow to her brain. Biji said it’s critical in the first 24 hours that they keep the blood pressure high. She will also wake up Dana every hour to ask her questions as protocol to be sure her responses are good. Then if Dana continues to progress tonight they will move her to a step down room tomorrow and most likely discharge her on Friday. Dr. Steinberg and his team stopped by to check on Dana and said she’s doing well. Dana was able to eat and was drinking plenty of fluids. Dana said that she feels much better this time than she felt in December 2012 when she had her first surgery.  That was so good to hear. Thank you all for your thoughts and prayers. Please continue to pray for her recovery. Good night. Bobby Dana’s left side

Dr. Steinberg called me (Bobby) at the waiting room at 6:10PM. He said that everything went very well. He said that she had very low blood flow but they finished and doubled her blood flow now. He said that his team will now finish everything up and she should be moved to ICU and she will be wheeled past me and Rob in the surgery waiting room in around 60-90 minutes. I can’t wait to see her!!! They will keep her in ICU tonight and see if they can move her into another room sometime tomorrow. Praise the Lord! 🙏🙏🙏🙏🙏 Thank you for all your continued prayers for a speedy recovery. Sister Sara and cousin Lauren will be coming to the hospital soon.

We were driving home from picking up Rob at the airport to get ready to head to Stanford when the hospital called. Dr. Steinberg had finished his first surgery early and they wanted me to come in early. We happened to be near the hospital and turned around and headed in immediately. They checked us in right away and got me set up in pre-op. Bobby & Rob are back with me now. We talked to mom & dad, Sara & Lori. They marked my right ear, which is a precaution to make sure they do the correct side. And I unbraided the section of hair in the front so they will have access to the surgical site. I was hoping to have more braided up because it gets pretty gooped up but they asked me to leave a good bit loose. Dad prayed with us and we feel ready for this surgery. Mahalo for your prayers and support. Please pray for Bobby & my family as they wait for the surgery to be completed. It will be a long day! Love you guys!

Sorry for not posting! We have been busy but so very blessed. SUNDAY On Sunday, we attended Bethany Lutheran Church with Aletha & Denis. It's a small congregation but so friendly. They have been praying for me and it was nice to get to fellowship with them. We hope to be able to attend service again after my surgery before heading home. After church, we met up with Jill & Campbell MacInnes for lunch. Jill was my very first contact at Stanford and she even came to meet me for my very first procedure 7 years ago. She was an angel. She and her family have supported so many of us in the Moyamoya community. Her daughter Tara is a phenomenal young woman and Moyamoya advocate. Campbell is also spearheading a Moyamoya patient get together at Stanford every month. We should be able to attend next Monday! It was a real blessing to be able to spend time with Jill & Campbell. We had so much fun that we forgot to get a photo! MONDAY We met with Dr. Steinberg this morning a...

Whew! It's been a busy couple of days. Bobby and I got to sleep in on Friday and then enjoyed a late breakfast at Cafe Borrone. It was yummy! Mexican Mocha  Savory waffles with ham & cheese inside Then I had neuropsych testing from 12:30 - 3:30!  If you ever want to feel like a dunce, do a neuropsych workup... Three hours of memory, vocabulary, math, fine motor, and screenings for anxiety, depression etc.... It was exhausting. But I am curious to see how I performed compared to the last time I was assessed in 2016.  One of the upsides is that I have a solid baseline established and we will be able to tell if this new issue has had any effect on my cognitive function...I don't think it has....but it will be really interesting to find out for sure! After testing we did some errands to Target, Dollar Tree and Costco. Then back to our home base for a delicious dinner cooked by Denis! Then I finally got to shower (I had to wait 24 hour...

Today was a LONG day, but a good one. Since my angiogram wasn't scheduled until 8:30, we didn't have to get up so early. When we got to Stanford, we had a bit of trouble finding the registration desk for the Cath-Angio Lab and Bobby stopped someone to ask directions. I immediately recognized him and asked if his name was Mark... It was and I reintroduced myself. Mark was my nurse for my very first angio at Stanford and for my second one as well. He's one of their nurse educators and just super nice! After checking in, a nurse came out to take me back and we got another great surprise. Leah used to live in Kakaako and was a nurse for 3 years at Queens! She and Mark ended up with me in both pre-op and recovery.  It was so nice to have them both taking care of me and talking story. It was a bit of a wait, as things were running a bit behind schedule, but time passed pretty quickly with my two awesome nurses. The angio itself went very well and I kind of napped through most...

After a late night In-n-Out feast last night, Bobby & I got to bed about 12:30. The man who checked us in advised that we leave an hour early to account for traffic, so it was an early morning for us. I had an MRI with Diamox, ultrasound and pre-op anesthesia consult. I have to say that all of my experiences here at Stanford have always been so amazing. Today was no different. I checked in and didn't even get to finish the paperwork before being taken back to change and prep for the MRI. Everyone indrroduces themself and is super friendly. Before an MRI the tech always checks to see if you are claustrophobic... I told him no and admitted that I have been known to nap during MRIs! This was a longer one...about 60 minutes... And included diamox and contrast and of course a nap! If you have never been in an MRI, it is a tube just wide enough for you to slide into and the scan is super loud full of banging and clicking. You have to wear ear plugs to protect your hearing. But as a...

I'm sitting here on a plane, halfway to California, missing my kids. Dropping James off wasn't too bad... We had Jakey with us and between him & the business of drop off, it was easy to put on a cheerful face, do a quick hug & kiss with a promise to FaceTime once we landed. Dropping Jakey off was another story...he doesn't really understand that we'll be gone for 3 weeks, but in the quiet as we walked back to the car, I couldn't help but cry. I haven't ever been away from the boys for longer than a few days. I think that's the hardest thing about all of this...being away from them and the uncertainty of what my recovery will look like.  Will it be smooth and quick like last time? Will I struggle with speech problems? Will I recover the same level of functioning I have right now? All of that is unknown... Well, unknown to me.... I have to keep reminding myself that God knows all of it. And His plans are always better than our own. Please pray that bo...

As Bobby and I prepare to fly to Stanford tomorrow, we are so so grateful to God for placing amazing friends and family in our lives who have just surrounded us with love and support.  I won't likely have the opportunity to write personal notes for a bit, but I did want to take a moment to say thank you here on the blog.  Mahalo to everyone who has been and continues to pray for us.  The power of prayer is profound and your support and love have kept us hopeful and focused on God and His plan for us rather than on the uncertainly and fear of the unknown.  Your emails, texts and cards are so appreciated! To my amazing friends who are like sisters to me...Jo & Stacie...you guys have always been there for me, and this time around is no different.  From working with Lori to set up a meal train and other ways for people to show their support, to talking with me on the phone, to straight up launching a full IG stories support campaign on my behalf, I will ne...

Wow... So you ever notice how just when you think you think you have a handle on things and your faith is REALLY strong  something will happen to test that? Just last Thursday, Bobby & I had an awesome meeting with our pediatrician (message me for a referral, because she really is AMAZING). We have always loved her for being an unapologetic straight shooter. But one who genuinely comes from a place of respect and care for her patients and families and who will freely admit where she herself has struggled. Anyway... She gave us some great advice on how to handle talking about this new health hurdle with the boys (James in particular). We learned that although we were using more kid friendly words, we were probably over sharing about the situation in ways that aren't developmentally appropriate. She really pushed us to consider how our own anxiety (mostly my anxiety about the boys) and worry might fuel our kid's anxiety. Then she reminded me that anxiety is fear and fear...

Wow...The last month has been a whirlwind.  My surgery date has been set for October 1 and Bobby & I fly up to Palo Alto on September 24 to begin pre-op procedures on September 25.  We will be there through October 15...a full THREE WEEKS away from my babies! Mom & dad will be home with the boys for a week before mom flies to San Francisco to take care of Lily while Sara & Ryan are out of town.   At times I have felt like wallowing in the unfairness of it all or caught up worrying about the boys and how all of this will affect them.  But then I get a reminder about what good God we serve. We prayed for an affordable place to stay and received an offer from my Aunty's friend to stay in their home while they are out of town.  And BONUS...they offered us the use of their car as well! We prayed to find good airfare for our trip and found two tickets that we were able to use miles to pay for! We prayed for insurance to pre-approve the surg...

Seven years ago, I had 2 strokes and was diagnosed with Moyamoya disease.  Moyamoya is rare neurovascular disease that causes the arteries in your brain to stenose (harden and close) for no apparent reason.  As you body fights to restore blood flow to your brain it develops tiny blood vessels that appear on an MRI as a "puff of smoke" or Moyamoya in the Japanese language.  These collateral vessels are extremely fragile and cannot provide the blood flow your brain desperately needs.  As a result patients often suffer Transient Ischemic Attacks (TIAs), stroke, seizures and other associated symptoms.  I was blessed...excellent doctors, great health insurance and a recent doctoral degree meant that I had the resources necessary to research and understand my diagnosis, get a quick and accurate diagnosis and treatment.  At the time, doctors thought it possible but unlikely that the Moyamoya would advance to my left side.  Two months after diagnosis, I ...