To operate or not operate, and if so which kind: that is the question

There are only two or three neurosurgeons who operate on AVM’s at Mayo and they cannot seem to agree on the best course of action for me.  Therefore, we are in no rush to make a quick decision about which route to take.

Dr. F.B. Meyer, the head of neurosurgery seems to think that I would be best served by the traditional intercranial surgery which entails physically going in after this thing.  This approach, following surgery, would involve at least two days in Intensive Care and five days of hospitalization afterward.  He explained that this approach has a 100% success rate….that is, they always get the AVM out. Oh yes, but there are also very real and serious complications in about 18% of cases (this number seems to vary from day to day).

The upside with this approach is that you know where you’re at soon after surgery.  You’re either good and everyone’s happy, good with some temporary short term deficits with fine motor skills like language or right side body movement that can be regained, not so good with a serious lifetime deficit that cannot be regained, or worse.  Again, if we do the math and say there is a 61% probability  of this thing bleeding some time in my life if we do nothing, versus a one time risk of up to 20% long term deficit….well you can see the conundrum…can’t you?  On Wednesday Dr. Meyer pretty much had us convinced that this was the route to take.  However, he then referred us for a consultation with his partner Dr. Pollock.

We met with Dr. Pollock today for about 45 minutes.  We liked him and his demeanor. Dr. Pollock is the world’s leader in a relatively new and innovative approach to  treating larger AVM’s with radio surgery…or the gamma knife.  The gamma knife isn’t really a knife, but rather focused radiation (radioactive cobalt) in exact areas of the AVM.  They have done radiosurgery like this at Mayo since 1990.

Dr. Pollock, however, has pioneered this new approach call “staged radio-surgery” whereby the AVM is divided up into 2 or 3 parts and blasted with radioactive stuff.  It is treated on 2 or 3 separate occasions with one to three months in between treatments.   The plus side of this is that there is only a 5% risk of serious problems with this approach.  The downside is that it has only about a 40% obliteration rate, with varying degrees of success possible as well.  Talking with Dr. Pollock made us seriously consider the possibility of not doing anything.  After all, life is now good!  I would be very happy to live the rest of my years with all of the deficits I was born with, without adding a one!  Both Drs. were in agreement: There are lots of ways neurosurgeons can hurt people.

The main downside to this “staged radio surgery” as I see it is that he has only done 25 of them in the past 11 years (and he’s the only one who does them at Mayo) at one of the premier medical centers in all the world.  In these same 11 years there have been 550 AVm’s treated at Mayo.  I’ve always kind of liked guinea pigs but at the same time I’ve always felt a little bad for them.  Dr. Pollock thinks I am a good candidate for this approach because of the size, density, and location.  When I asked him if he would recommend this for his own son he seemed to dodge the question.

When Dr. Meyer called on my cell phone today I asked him if he would be talking my case over with Dr. Pollock.  He assured me that he would.  I don’t know how neurosurgeons go at it when wrestling through their differences…maybe they just pull out various standardized test scores along their journeys and try to gain the upperhand in that way.  I expect Dr. Meyer to give me a call tomorrow.  I think I’d rather talk to the repair shop guy again…about anything but this.

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7 thoughts on “To operate or not operate, and if so which kind: that is the question”

  1. Hi there – I read your Thank You in the Advocate last night and was shocked to hear what had happened. You have extremely high spirits and it’s actually quite fun to read your blogs because your humor is awesome. The part in the thank you about your football dreams being toast – funny. I am still sad that this happened to you – a genuinely nice man. Sounds like you are in a good place and I hope they can decide what to do soon. Will keep checking in on your updates. Thanks for letting everyone be a part of your journey.

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  2. Pondering upon reality
    Mind bending to unrealistic conclusions
    To things that ought not be
    But seem to be occurring all around me

    Fears abound within me
    I lose my grip and begin to fall
    To places of depression and bewilderment
    To places I never thought to be

    Grasping to some form of hope
    Not knowing where the strength is from
    Yet desperately I call out
    To the one who seems to embrace me

    Now understanding
    Gaining peace and hope within
    It is God who leads me into the unknown
    Helping me face another should be in my reality

    Realization of reality
    Which is not what I had planned
    But in His loving sovereignty
    No other place I ought to be

    For with Him lies eternity
    This earth my only temporal home
    Even though storms rage around me
    Some day I will be forever home

    For in Him lies true reality
    Planned and guided alone by Him
    Lovingly He maps out our past, present, and futures
    In a way we cannot often understand

    Yet how can I question His plans
    Nor be angry for what has been
    I would not give a moment back
    For even the hard moments ARE a part of who I have become

    What I would not be without the hard realities
    Through the moments of heartache and sorrow
    Stronger and more able to understand
    The many others around me living another should be reality

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  3. As you know, I am a pastor in south Alabama. I have been in the ministry for 34 years. I have never been through what you are going through right now. I have had to make “life and death” decisions that would challenge the wisdom of Solomon. When I have not been able to see my way clear, I have always gone back to the verses in Isaiah that God used to settle my call to His service. Isaiah 43:1-7 has helped me in every circumstance. I have not found “answers” there but I have found peace that stilled my heart so that I could hear God’s voice and find His answer. I think I hear you saying in this blog, “I wonder what God wants?”

    Know that I am praying for you as “the brother that I haven’t met yet.”

    http://www.tonydye.wordpress.com

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  4. Mike and Karla,

    We are praying that God will make the decision clear for you. I couldn’t help but think that some of, if not THE greatest minds in neurosurgery aren’t in agreement on the best course – yet the Master Physician knows EXACTLY what is best. That’s why we continue to pray for HIS voice to come through. And, for Karla, my stat compatriat, remember, God is the creator of statistics, but He isn’t limited by them.

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  5. How easy it is for us as pastors to say “Give it to God” . It is much harder when it us or our family. Statistics are merely numbers based on human interpretation. When the scouts were sent out by Moses ( Numbers 13 ) to explore the land of Canaan which God was GIVING them the “statistical” report was showed only 1 in 12 thought it was possible. The other 11 wanted to stay where they were. With God all things are possible. We are all praying that his will is made apparent to you and that you and Karla will be filled with the peace that comes from being in God’s will, walking the path he leads you down.

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  6. Hello,
    My name is Montessa and I was sent a prayer request for you and your family today through my homeschool loop.

    My 15 year old daughter just had intercranial resection surgery on September 10. The surgery was performed on her left posterior side in the occipital lobe at Mayo Clinic in Rochester. Dr. Meyer performed the first of two surgeries. My girl was in the hospital from August 28 to September 23. It was very scary, but we made it through and she’s doing well now. The surgery was performed because of a birth defect that caused seizures.

    Our prayers will be with you, and if you have any questions we’d be happy to answer them.

    Prayerfully,
    Montessa

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