Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Wednesday, January 5, 2011

Mystery solved!

HI all,


For those of you wondering, we finally have an answer as to WHY I suffered a stroke during surgery. We had speculated but didn't really know why, until I spoke with Dr. Spetzler yesterday. I had seen Dr. Spetzler on many occasions while I was in the hospital, but I wasn't thinking clearly enough to ask the right questions at the time, once in rehab I did start to question WHY even though I knew there was the risk of stoke prior to surgery and answers as to what happened were not going to change the outcome or my overwhelming joy of getting this thing out of my head....but I still wanted to know....and now I do know. To explain what happened I should probably start at the beginning .As it turns out my cavernous angioma was in a very difficult location, in the middle of my brain in the insular cortex right next to the right basal ganglia....a place most neurosurgeons don't ever want to go. I knew this from the very beginning when the first neurologist read my first MRI 8/31/09  and told me," You have a very small cavernous angioma (CM)...something you were born with in the middle of your brain....it's nothing to worry about and you better hope you never need it out because they will not be able to get it out without causing you a lot of problems." She proceeded to tell me that lots of people(statistics show1 in 100-300) have cavernous angiomas and according to this first doctor they NEVER cause anyone any problems(sooo not true!!!!). I asked her if my complaints(dizziness, eye problems(can't see moving objects), and a strange feeling of being "out of it" that comes and goes 20-30 times a day(later determined to be partial seizures) were related to my CM....she told me ,"NO, this is an incidental finding....nothing to worry about and it's not causing your problems. You probably have an inner ear infection" and she sent me on my way with a prescription for sea-sick medicine which did nothing to resolve my complaints. I found it hard to believe that it was merely a "coincidence" AKA incidental finding that I had neurological complaints, they find a big mass in my brain and the mass is according to the first neurologists no way the culprit of my complaints. So glad I didn't take her word for it....and I started my tireless pursuit for answers after getting home and putting my MRI up the window to see if I could find the "tiny" thing she described. Well, I'm no MRI expert and I almost fell over after "finding" this tiny thing immediately. Turns out it wasn't tiny 2.4cm(2.2cm =1 inch) diameter to start and nearly 4.0cm(size of a ping  pong ball) a year later. Although, all my repeat MRI reports called the lesion "unchanged" they gave much larger dimensions with each scan.  This is where Angioma Alliance helped me tremendously...so many answers....so many kind, knowledgeable people that are afflicted with this condition sharing their experiences, struggles, and successes. After finding the first neurologist gave me quite a bit of inaccurate information I went on to see several more doctors that ordered different tests MRAs, an angiogram after my CM was clearly visible on MRA (cavernous angiomas normally aren't supposed to show up on MRAs because they are slow blood flow lesions, and only high blood flow lesions are supposed to show up on MRA) and one MD suspected an AVM . Turns out I didn't have an AVM, but like many/most people with the "sporadic" kind of cavernous angioma (means you only have one of these monsters in your head and you most likely do not carry the gene that passes theses onto your children) I also have a DVA(developmental venous anomaly)...very important to make sure your surgeon knows all about this and doesn't touch it if you have one. So as I kept a running list of questions and I saw doctor after doctor asking them all I could. The lack of awareness in the neurological community regarding CMs was glaring as I saw specialist after specialist. So many doctors gave me dangerous advice, but as I worked up the food chain of neuros and neurosurgeons I started to get more consistent correct answers, and more scary MRIs followed (every consecutive MRI showed more bleeding and growth). This is when watching and waiting started to seem like a bad gamble, even though I didn't want anything to do with such a frightening surgery. I contacted Dr. Spetzler in MAY 2010 half thinking he was going to tell me to not have surgery and then I could feel like I did the best I could for John, Jack and myself. If one of the best neurosurgeons in the world thinks I should leave this thing alone then that was going to be the end of the road, but his resident called me and turned our world upside down. He told me," Dr. Spetzler reviewed your scans and recommends surgery for you." I think I had to catch my breath for a minute. I felt sick to my stomach literally. How could I leave it if one of the the best specialists is telling me he thinks I'm going to better off  by having this scary surgery? John and I decided to go to Phoenix to interview Dr. Spetzler in person and get a feel....besides we were going to Phoenix for our nephew's graduation in May anyway....we just planned to extend our trip and see how we liked Dr. Spetzler. We saw Dr. Spetzler in May 2010 and he was great. The nicest, funniest, most personable surgeon we met....and by this point in time we had met quite a few. At least he looked at the MRI and didn't just tell me, “You look healthy, I think you're tired" like the last neurosurgeon told me. He answered all my questions...finally ...and gave us lots of time. Every previous doctor seemed at least partially irritated by all my questions. After we got home we thought...and thought....and thought. At one point I thought I was ready for surgery and I scheduled it, but as the date approached I just wasn't ready and we had a few other more pressing things to deal with at the time, so I postponed surgery and tried to get a few more opinions. My theory is that you can never have too many smart people give you their opinion. I sent all my stuff to Dr. Samson in Texas because I had heard great things about him, but he didn't feel comfortable giving me an opinion without him evaluating me in his office....which I was disappointed about, but totally understand. I also sent my stuff to Dr. Steinberg at Stanford because I had also heard great things about him. His office called me and was super nice and knowledgeable too! He also recommended surgery, and I thought for some time about having surgery with him, but the tipping point for us going to Phoenix was that we have family in Phoenix and we knew we were going to need as much help as possible considering we have an almost two year old to take care of  on top of this major brain surgery.(Tom and Rebecca....you guys are awesome!!! Thanks for all your help!) After getting Dr. Steinberg's opinion, it was finally clear that surgery was our only option and we decided that the risk of the surgery was less than the risk of leaving my "active, large" cavernous angioma. Anything that was possible in surgery was also a possibility of leaving my aggressive cavernous angioma that had bled 3+ times prior to surgery. I kept saying and thinking ", As long as I'm alive after surgery....I'm going to be fine"...and that holds true. I'm alive and I'm way better than fine...I'm wonderful even if my speech is a little strange or my smile is a little crooked....it's all getting better all the time anyway! There were many factors that went into this decision and this is a very personal decision for anyone facing this dilemma....but for us this was the perfect decision even though I ended up with a stroke....because I'm going to be 100% better eventually and if I never had surgery I don't think I could say that. I wasn't 100% before surgery  and in fact, I think I was getting worse for the last year and a half, but I think I'm going to get there now that we've "uncluttered" some space in my brain. So back to the point....why the stroke? I have almost 0 risk factors for stroke other than major brain surgery. Non-smoker, previously "healthy" weight....now maybe "underweight", low blood pressure, normal cholesterol, active lifestyle, previously(prior to becoming dizzy with every activity) very physically fit/active. As it turns out, the blood vessels in my brain happened to be in the way of the surgery. According to Dr. Spetzler there was a tiny normal blood vessel running through my cavernous angioma that had to be cut in order to take the cavernous angioma out. They made a decision during the surgery to sacrifice that blood vessel that in turn killed a small piece of my brain AKA "stroke" (they cut off the circulation of blood flow to a small part of my brain because there was no other alternative) in order to remove my aggressive cavernous angioma. Glad they didn't ask me my opinion because I would have been too afraid to make that call....but knowing how I'm recovering so well so far....I'm glad they made that call. I can only assume his experience and expert knowledge guided that decision, he must have known that he wasn't going to mess me up too badly. It also said in the post-op report that my age 36 (considered "young" in neurological speak) was a factor in their calculated decision to sacrifice that blood vessel. So that's the story. Feel free to ask any questions if I left out something you may be wondering.

As always, thank you to everyone that has helped us and continues to help us during this difficult time. We couldn't have gotten here without you and we still have a ways to go!!!

Best wishes to everyone!

7 comments:

  1. I hope everything continues to improve for you Elizabeth. You are a brave lady.

    As co-ordinator of Cavernoma Alliance UK, which is available to all Americans and anyone else in the world, although we are based in the UK, can I request that you put a link to our website as well. The address is www.cavernoma.org.uk Thanks and I wish you continued joy.

    Ian

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  2. Elizabeth,
    You are such an inspiration and I'm so happy you're doing so well after EVERYTHING you've been through (APPLAUSE, APPLAUSE!!!)
    I too can't imagine NOT having surgery and am also grateful for having one of the GREAT NS you mentioned.
    You & I are also very blessed in being married to great guys who are right there with us.
    Onward & upward,
    PattiG :)

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  3. The WHY is always so hard, and I am glad you got answers! I think that having this information will also bring more peace to the situation, take away the worry of the WHY and help further your recovery. You are doing so GREAT and are so BRAVE! xoxox, Elizabeth

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  4. Uncle Nick & AuntieJanuary 7, 2011 at 6:44 PM

    Elizabeth,
    Thank you for sharing your story with all of us. Letting us in to your world helps us remember how very special life is. You have taught us so much about being Thankful for EVERY day! Jack has such a brave mommy. Your love for Jack is so tender. You and John are wonderful parents. Jack will read this blog someday and will be so proud to be John and your son. Knowing how sick your were but still gave a 100% to taking care of Jack, your amazing. We love you so much, Uncle Nick, Auntie

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  5. So glad you are doing well! I love reading your positive posts! I hope you are getting stronger by the day! I too have a DVA, but have been told by dr. samson and my neurologist they almost never cause any problems. I guess when there is a DVA they are almost always associated with an angioma (i am sure you know all this :) ) and those darn angiomas are what cause the problem. Stay well!

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  6. Information is the key to everything, with out it you feel lost.

    I´m so glad that you are better , makes me smile, I think there is no way better to start a new year than this, you guys together at home.. so I wish you all ( the hole family and your frends ); Happiness and Health 2011

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  7. just got caught up! I am glad you finally found out why you had the stroke. I wish he would have told your hubby after surgery what happened!! oh well! so glad you are doing better!

    Hugs! your aa buddy!
    Bec

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