Wow, I guess I had a lot to say...

and I'm sure there will be much, much more to come.

Power of Prayer, Family and Friends

It is amazing to find out how many people have been praying for me. I was on so many church prayer chains, and had so many people, even those that I don't even know, praying for me.

The local MOMS club and MOPS that we belonged to were also praying for me. They also gave me and my family gifts, watched my kids for me when I was in ICU, made and brought over meals...it was just so amazing to see how many people care for you. My Mom and sister each also stayed with us for a week each to help out around the house, take care of the kids and cook meals. They are such a blessing!!!

It was hard to accept help, but I was at a point where I knew I needed it all, and was so very, very thankful for everything!

Halloween 2010...

Is the one year anniversary of my strokes.

I remember Halloween 2009...

My husband and I took our kids Trick-or-Treating. We went to my in-laws house first. I remember telling them that I had a huge headache. Actually, I was having frequent headaches. It seems I was telling a lot of people, many times, that I had a headache the few weeks prior to this. We went to a few houses in their area and then went home. There we went to a few houses and my headache was too much so I went home to hand out candy.

I took some Tyenol and went to bed. The next morning, Novemeber 1st, was the day it all started. It was a Sunday. The day my Vikings played the Packers. But before that game happened, I was in Urgent Care not feeling well, just a little *off*, without normal use of my left arm and hand/fingers. It was after 3:00pm and I wanted to make sure every nurse/Doctor that I talked to knew not to speak of the game. I didn't want to know the score. We were DVRing it for later that night. That's how we watch football. You just can't really *watch* football with the kids around. And, we did watch that game that night, and I believe we won!

How I am physically and emotionally

I had very few symptoms from the stokes. I was and am very lucky!

Before the actual strokes I had some tingling in my fingers in my left hand. I didn't think much of it other than it was strange. I thought maybe I was starting to get carpel tunnel or something like that. I really didn't put much thought into it. In hind sight, it was the start of something very bad.

After the strokes I lost some control of my left arm, hand and fingers. I could still move them all, it just took a little extra effort to do so. It just didn't feel right at all. There were times as well that I lost all function in my hand and fingers. I couldn't move them or feel them at all. It was so scary!

Since the surgeries I have't had any of that any more. I do however, get dizzy and light-headed when I get up from sitting, to a standing and walking all-in-one motion. Not horribly, but enough that I hold on to something for about 10 seconds before it stops. My left foot also has this "humming" feeling when I am still. It's hard to describe, but it's like an very slight vibration feeling. Both things that I can live with. Key words...I can live...with!

That takes care of the physical part. That was easy...I'm still not sure how I am/feel emotionally about it still, most days are different. Obviously I am so super thankful that I am alive and well and doing as well as I am. I don't know another Moyamoya patient that is doing as well as I am. The emotional side is hard. I went from first symptoms to surgery in one month. That is unheard of! But, since it was so fast, it was like a blur..a whirlwind of disbelief. I felt I had to be strong for my family. My children were so young; they didn't know what was going on. All they knew was that mommy was sick and was in the hospital with head ouchies. I didn't want them to see me scared or cry. I had to be strong for them. Actually, I rarely cried. I don't really remember ever crying actually. I did what had to be done, there were no options. It was what it was. After all was said and done, and we were home, back to our normal life, that's when the reality of it set in. But, again, I wanted to be strong. I was a stay at home mom to 2 young kids. I wanted them to know that all was fine and mommy was ok. That was may main priority...to get things back to normal and get the kids back into their normal routine.

Now it's a little different. Now there is another woman I know who has Moyamoya as well, but is not doing as well. I feel so bad/sad for her and her family and feel frustrated that there isn't more I can do for them. I have some guilt issues as well...first, that I am doing so well and she isn't. I know this isn't my fault, but I have my hair and normalcy and she is in this "medical hell limbo world". It's just so sad and tragic. Secondly, I have guilt that I never got back to these same doctors after I went to San Fransisco. I feel like had I got back to them and told them that they misdiagnosed me with the Vaculitis and that is WAS Moyamoya, maybe that would have helped them correctly diagnose this woman only 3 months later, and she wouldn't have had to go through all the crap she had to go through. Again, logically, I know this isn't my fault, but the "what if's" can drive you crazy. So, yes, my days vary.

Hero/God-like

My Neurosurgeon, that is.

I think this may be common to think of the person that saved your life as a hero, or even God-like. I mean, come on, without him I'd be dead or in a stroke-induced state of life within about 5 years. How can he not seem this way to me? He gave me my life back, he gave my children their mother, and my husband his wife back...he's a pretty amazing person if you ask me. :)

Another woman in my area diagnosed with Moyamoya as well.

She is a 30 year old mother of four. Our experience is eerily similar...

She and I both started out at the same small local hospital. We were both told we had sinus infections after going to Urgent Care. We both were transfered, by ambulance, to another, bigger hospital. Again, the same hospital. She and I both saw the same Neurologists, and were both misdiagnosed with Vasculitis of the brain. We were both to do the same treatment: six to nine months of steroids (prednisone) and a type of chemotherapy treatment. This is where we saught a second opinion and went to San Fransisco. Unfortunately, she didn't. She went through all of that only to be reassessed after there was no improvement and then diagnosed with Moyamoya. Her doctors aren't specialists and she's had 2 surgeries, one to bypass the Moyamoya and another skin graft, to help correct her incision site. She is still under their care, and is in my thoughts almost constantly. I just wish I could do more.

Six month follow-up trip to San Fransisco

In August (2nd - 10th) 2010, I flew back to San Fransisco for my six month follow up testing to see how my surgeries were doing. I had to do many test...cranial angiogram, MRI with contrast, two SPECT tests, with and without diamox, a Neuropsychological exam, cranial ultrasounds and blood tests. I also participated in my third study for Moyamoya.

The ultrasounds measure how the flood flow is doing in my grafts. Those are a piece of cake and they lady who does it is cooky, in a really fun way. She's so much fun! I had that Wednesday, right after my Neuropsychological exam, which was so crazy! I have no idea how they read into those things!I also had a SPECT test without diamox on Wednesday. Whew...busy day!

Thursday I had the cranial angiogram. The procedure itself is really no big deal. They give you a little bit of anesthesia, but not much, as you have to be able to participate in the procedure. I was required to stay overnight in their 23 hour observation room. I did not know his and was not happy about it. I guess there is a slight chance of brain bleeding from the procedure and since I was in San Fransisco alone, all alone in my hotel room, they couldn't release me. I was released at 9:00am Friday morning.

Friday morning I had to also drive about 2 miles away for a 9:00am MRI. They had taken out my IV at the hospital and I had to have another one put in as soon as I got to the imaging place. I was mad because they should have left the other one in place. I also had the SPECT test with Diamox that day. They left my IV in for that, which was very nice.

I had Saturday and Sunday to myself, which was nice. Saturday I drove down to Monterrey Bay and spent some time on the beach. It took about 2 hours to drive to, but it was a nice, relaxing drive. Sunday I just bummed around town. I went to an open air mall and enjoyed some shopping and lunch.

Monday I had my appointment with Dr. Steinberg to go over my test results. My appointment was at noon and I saw him at 3:00. Yes, late, but with a world re-known Moyamoya specialist, you're lucky to see him and you'll take him when you get him!

My test results were very good! He said that my surgeries were very successful and everything looked great! He said my SPECT test before surgery was "HORRIBLE!" and after surgery my brain looks "like a normal brain". That was awesome, awesome, awesome news! I was also told that I didn't have to go back for another three years!!!

Actual Diagnosis

Moyamoya disease with watershed infracts in the right hemisphere and occlusion of the right M1 middle cerebral artery, high-grade stenosis of the right A1 anterior cerebral artery, and occlusion of the left supraclinoid internal carotid artery with moyamoya vessels bilaterally. SPECT cerebral blood flow study demonstrated a large territory of impaired hemodynamic reserve in the right hemisphere as well as some left-sided hemodynamic as well.

SURGERY #1

Surgery for revascularization of the right hemisphere - A 1.0mm diameter parietal branch of the superficial temporal artery was found as a donor. A 1.2mm diameter M4 branch of the middle cerebral artery emerging from the sylvian fissure on the frontal side was found as the recipient.

SURGERY #2

Surgery for revascularization of the left hemisphere - A 1.2mm diameter frontal branch of the superficial temporal artery was found as the donor. A 1.6mm diameter M4 branch of the middle cerebral artery emerging from the sylvian fissure on the frontal side was found as the recipient.

Surgery photos

Surgery #1 - December 2, 2009

right side, 7 hours

Surgery #2 - December 9, 2009

left side, 8 hours

Both surgeries were performed by Dr. Gary Steinberg at Stanford University, Stanford, California.

My Moyamoya story...

On Sunday, November 1, 2009 I woke up with a slightly heavy left arm and slightly clumsy fingers. I could still use and move them, but it just took a little extra effort. I had no pain, but something just wasn't right. After being up a few hours I decided to go take a nap, to see if that would help. Two hours later, still no improvement. My husband took me to our local Urgent Care. I had a CT scan and an EKG and was sent home with an appointment for an MRI the next day.

The next day I went back to the hospital for my MRI appointment and was to see my primary care physician right after. During my appointment he told me that I had a stroke and that I was being admitted to the hospital immediately. I was in shock! I drove myself to this appointment. I was so sure it would have ended up being nothing. I called my husband, crying, and told him the news. He took our two young children (4 and 2) to his mother's house and came to the hospital.

Little did we know this would be the first of three hospital admittances.

While at the hospital they did many tests. I had another MRI, this time with contrast, an EEG and a TEE (transesophageal echocardiogram). They thought maybe I had a hole in my heart which sent a blood clot to my brain, which wasn't the case. All of the tests came back fine, except this MRI showed "several" strokes. I was even asked, in an accusatory way, if I had ever been on drugs, specifically cocaine or crystal meth. I was shocked that they would even ask me that. The answer was obviously no. Before the results of the MRI were known I was scheduled to be released after an overnight stay. I was so glad to be going home. I missed my family terribly!

Instead of being released, I was transported by ambulance to another, bigger hospital. I was admitted to the Neurology floor and was scheduled to have an angiogram the next day. I was very scared and confused. I didn't know what was going on and none of the doctors seemed to know either. One of the Neurologists who specialized in Multiple Sclerosis came to see me at about 10:00 that night. We talked for a long time and he had me perform many hand/eye coordination tests. Despite the slight heaviness in my left arm and lack of coordination in my fingers, I was very strong and functioning fine. This was the first Neurologist I saw.

The next day I had an angiogram. During the test I showed signs of stroke. At one point it felt like my lip and tongue were swollen and I couldn't speak well. I could tell I was slurring my words. Because of this, I was taken immediately to ICU. The doctor who performed this test told my husband that my brain blood vessels weren't carrying blood to parts of my brain, causing the strokes. He said it looked like Vasculitis of the brain. He explained what that was and that it was treatable to my husband in great detail. After the lengthy discussion he also threw out that it could also be Moyamoya, a rare brain disease, but he wasn't sure.

My husband went home that night and researched Vasculitis on the internet. All four of the Neurologists that saw me were leaning towards Vasculitis so he wanted to learn more about it. I stayed in ICU 4 days, on blood pressure raising medication. Their thought was to keep my blood pressure high as to get more blood to my brain. During my ICU stay I had many blood tests, an artery line to monitor my blood pressure (which was horrible..I actually had a wire-like thing inserted into the artery in my wrist!) and another MRI with contrast. The MRI didn't show any more strokes and all of my symptoms had gone away. I was released to the Neurology floor where I spent the night and was released to go home the next day. That was Saturday.

Saturday night I woke up at about 10:30pm and couldn't move the fingers on my left hand very well...the symptoms were coming back, after not having any while in the hospital. I woke up my husband and told him. I was crying and was so scared. My mom was staying with us to help with the kids and we woke her up to tell her what was happening and that we were going back to the hospital. I chose to go back to the hospital I had just been in, which was about a 45 minute drive. After about half an hour into the drive the symptom had resolved and I had control of my fingers again. We went to the hospital anyway and were sent home. We were told that as long as the symptoms were resolving within an hour there was really nothing they could do.

Sunday night I lost all feeling and movement in my left hand. There was nothing there. We started watching the time while my husband called the stroke doctor that was on call that night. He was very helpful and with the information he gave us over the phone the symptom went away in just over an hour.

The next day my husband spoke with another Neurologist who wanted me to go back into the ICU for further monitoring. Later that day, after much convincing from the doctors, I returned to the hospital: admittance number three. I walked into the ICU and was told that I was in the wrong place because "No one walks into ICU on their own". I was in ICU another 4 days before being release to the Neurology floor for a night and sent home the next day. While in the hospital I was fine, no symptoms at all. None of the Neurologist knew what was wrong with me and were all leaning towards Vasculitis. The word Moyamoya came up again, but as a very unlikely possibility. They were going to start me on a six to nine month treatment of Prednisone and some kind of chemotherapy type drug to treat the Vasculitis. They said it would be a really rough treatment for me. It was at this time that my husband thought he should go online and investigate what this Moyamoya was. They had mentioned it, again as very unlikely, as it was so rare. One in two million people have it.

My husband went home from the hospital at night and spent many hours online reading and learning about Moyamoya. What he read scared him very much. It was a very serious, deadly disease, that had no cure. There was a surgical treatment for it, a type of bypass surgery, but that was it. We talked about it with the Neurologists in the hospital and told them that we were going to get a second opinion before starting their treatment plan for Vasculitis. While looking online, my husband learned of a doctor at Stanford University Medical Center in San Fransisco, that specialized in Moyamoya.

While I was in the ICU my husband contacted this doctor. He was told that my symptoms sounded very much like Moyamoya disease and to send all my films and testing results to his office. All the information was sent overnight immediately. A few days later, while I was at home in bed, we got a call from Stanford University. The doctor said it was definitely Moyamoya disease and he would treat me. We found out that he is a Neurosurgeon who specializes in Moyamoya. He sees people from all over the world for this condition and he has done over 700 surgeries! He said I needed two brain surgeries, one on each side of my brain and that they had two openings: December 2nd and December 9th, 2009. I jumped at the opportunity. None of the hospitals in our area could even start to see me until after the new year and they didn't specialize in the treatment of Moyamoya. I didn't want to spend the Christmas holiday on pins and needles, not knowing if anything would happen to me.

On November 29, 2009 our family flew to San Fransisco. We rented a fully furnished apartment and my sister in law stayed with us to help with the kids. The next two days were spent doing testing at the hospital before surgery. On December 2nd I went in for the first of my two surgeries. It was a 7 hour surgery where they put me into hypothermia, removed a golf ball size portion of my scull and using a donor vein on the outside of my scull, bypassed the bad arteries and sewed a new one to another one in my brain. I was in the hospital for 5 total days. I was released for two days. My son had his third birthday while I was released and we celebrated with a small party. I then went back to the hospital to do it all over again, on the other side. The second surgery took 8 hours and I spent another 5 days in the hospital before I was released. We flew back home 3 days later.

I am very lucky. To go from first symptom to diagnosis to surgery in one month is unheard of. Most people struggle with mis-diagnosis and more serious strokes for years before they get the correct diagnosis of Moyamoya. I most likely wouldn't have survived 5 years without death or serious results from a major stroke without these surgeries. I am now living a normal life with very little to no residual effects from the strokes or surgery. I am a stay-at-home-mom who is very busy with my two young children, living a healthy, normal life with a normal life expectancy thanks to my husband's research online. Had he not looked and researched online I would currently be being treated for a disease I don't have, that wouldn't have helped and would have wasted the precious time I had left with my family.