On Feb 1st I was working from home and had a bad headache, left side body numbness, nausea, and blurry vision. I seriously felt like I was about to have a stroke or heart attack! I told Mark to take me to my doctors. So we went and they checked me out and said I probably had Bells Palsy (wrong) and they would do an MRI on Monday. When we left something did not sit right and I told Mark to bring me to ER, so we went to Noble. After some neuro tests and a CT scan they told me I had MS (wrong again) and again would schedule a MRI for Monday. I still felt uneasy about being discharged, but went home anyway. Later that night I woke up with a jolt of pain in my head. I told Mark to get me to hospital ASAP! We went to Baystate this time. After 8 hours in the ER they got me to my own room and I was admitted. Later that night I had a 2 hour MRI. I've had a MRI before and was fine, but there was something about having my head pinned down that gave me multiple panic attacks! It was awful, but I stayed still. The tests came back and the doctors saw something of concern so they ordered a CT scan witha dye to be injected into my veins, but it was a weekend so the results took a while.
The next day my parents were visiting and it was Super Bowl Sunday. My dad had a party he was invited to and I told him to go and that I was fine. I told my mom to leave too so I could nap. I swear 5 minutes after they left this grim faced lady comes in the room looking like she's going to serve me a death sentence. She proceeded to tell me I had narrowed ventricles in my brain and one is totally blocked. She said it appears that I have something called MoyaMoya. I tried to stay strong and asked what it is? Am I going to die? Is it treatable? She grabbed my hand and didn't answer any of my questions! At that point I lost it! (Can i say that this is my second negative exerience with baystate not being able to explain a diagnosis. When i found out Colton had spina bifida my doctor didnt answer any of my questions too) All I could think of is my kids being motherless! For those that know me know I stay positive, but this seriously brought out a weakness in me. I called my dad hysterically crying telling him to get back ASAP! He arrived and this lady proceeded to tell him a whole bunch of stuff like I will need support (duh!), that I will end up in a nursing home (never!) and basically had no right to be delivering this news to us because she knew nothing about Moyamoya.
So my first thought was get me out of Baystate because they are not touching my brain. Mark called Coltons Neurologist ,who we highly respect to see where we should go. He suggested Mass General in Boston. My parents then did research and found that Dr Oglivy at Mass Gen deals with Moyamoya a lot. I felt comfortable right away and they had a bed for me there. The neuro at Baystate admitted that they don't know much about it and didn't feel comfortable treating me, so I was released to go to Mass Gen.
Mass General is amazing! I had more neuro tests and another CT scan. I was released 2 days later to come back for surgery.
My surgery was Feb 13th. It was hard because Mark and my Dad couldn't be there before, but my mom was. I had worked so hard to get Colton into Boston Children's and his appointment just happened to be Feb 13th. So my dad and Mark brought Colton to his appointment and my mom brought me to Mass Gen. So basically leading up to the surgery I received lots of pokes and IV's etc. I just tried to relax (I loved the station they have with relaxing music and pictures). When they brought me in the surgery room I was a mess (a medicated mess) and it seems like a big blur! I think my surgeon could tell I was nervous and came over and held my hand while they put me to sleep (he seriously is amazing and has a great bedside manner. Some doctors seem to forget that they are working on a person and not just a disease). Waking up I felt so sick and in pain. I was basically in and out of sleep till the next morning. All I remember is my dad, Colton, Mark and my mother in law coming a few hours after the surgery and Colton saying "She's not talking to me. Why is she mad at me?". I guess he was really interested in my boo boo and even asked "what kind of boo boo is that?!". My mom said he was flirting with all the nurses and showing them where he gave blood earlier that day. He's been exposed to hospitals and surgeries since the first day of his life so this kind of stuff doesn't faze him.
So basically I am still recovering 3 months later. I have good days and bad days. I have days that I freak myself out thinking I am having a stroke. I have days when I think "why me?". I have days that I feel great and like myself. The thing with this type of brain surgery I had is that it doesn't work right away. They did something called a EDAS where they take a ventricle and make burr holes to the brain and place the ventricle through the burr holes on the brain in hopes that it will start to bring Bloodflow to my brain.
So moyamoya is pretty rare! Of course only I would get something crazy like this, but I guess God knows I can deal with it. I truly am like 1 in 2 million (numbers have been updated recently so it may not be 2 million anymore). Moyamoya is basically narrowing of blood vessels in the brain and other small ventricles form to help suffice the loss of blood flow. So when you look at a picture it basically looks like a puff of smoke and moyamoya means puff of smoke in Japanese. There are several procedures that are used to help with this disease, but there is NO CURE. Right now it's just the right side of my brain that has this issue, but it can happen to the left side at any time. So I am going to require yearly MRI/ct scans to stay on top of it. The procedure I had can also take 8 months to a year for it to start proper blood flow to my brain. That part is what makes me nervous because I am still at risk for a stroke, but I am trying not to think about that. It's just hard trying to be a great mother and wife, but feeling tired and run down all the time. It's hard to let myself rest when a 3 year old doesn't understand what's wrong. Kadyn luckily is amazing and helps me a lot with Colton. She's quiet, but I know she is concerned and worried about me. She is my future little neurosurgeon and actually enjoyed checking my incision for possible infection.
Some symptoms I was having is extreme fatigue, arm and face tingling/numbness, mild headaches, and sometimes I would forget words. I also have had a history of occular migraines. This disease is often misdiagnosed because it is so rare.
It's been a crazy few months for us! I went back to work a few weeks ago and it hasn't been easy. I still have symptoms and I am still tired. However I refuse to let this get the best of me! I got this.