My Brain Surgery 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 many 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 and oxygen 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. They're 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. 




 

momma2miracles momma2miracles
36-40, F
2 Responses Mar 12, 2010

Wow, what a story; I really feel for you and say so because I have had brain surgery to remove a tunour the size of my fist. Different reasons but similar feelings. I can only empathise because obviously I am not feeling the same at present; what I will share is that it takes time - three months is nothing, you have come through a life changing experience and must feel highly charged, you need and deserve the help from those who love you and you will need time to come to terms with what has just happened. My operation was three years ago after being given three weeks to live, well there is one in the eye for the tumour eh? Be positive, look it in the eye and be strong.<br />
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Your family and friends will not really know what to say and feel useless; every time they cannot see you have an issue (and the thoughts/feelings you have are not physical) so cannot be seen, every time they see you looking fit and well they presume you should be recovered.<br />
<br />
Not so, you have done remarkably well to get this far, your emotional state will be all over the place until you come to terms with this - I am truely sorry to hear your story, really glad you made it out the other side and my thoughts are with you as you fight those demons (Respect, well done and don't give in to it). It is not easy but it does become more managable as time goes on<br />
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If you want to talk I am happy to listen, Stay well and God Bless<br />
<br />
Mike

I now have questions...To me it is still very real and emotional. I feel I do not get the support I still need from friends and family. My mom has down played it so much I feel like she thinks it was no big deal. I have had comments from friends like "Are you still milking that?" While going through my surgeries I was very brave and strong, for my family, my children especially, but now I am still very emotional about it. I feel like family and friends want me to just get over it and on with life because" it was 3 months ago and you're fine now". It is still very real to me and sometimes I need to talk about it but I find it hard to discuss without feeling like "oh man, not this again". Do you ever feel like that? How do you deal with it?