Friday, March 16, 2012

Well that sucks

Anger, frustration, disappointment, annoyance.  There have been a wide spectrum of feelings gone through today.

Gloomy view from waiting room, foretelling
The visit to the neurosurgeon today was full of hope and promise with the recent discovery of the small hole in my brainstem to access my cavernous angioma.  Well guess what, it ain't BIG enough.

Turns out, to have a chance of a more successful surgery, I need to have a big bleed that causes a large hole that makes the full removal or resection of the angioma more possible.  The surgeon described working through a smaller hole like I have presenting problems, as with a smaller field of view it would be more likely to leave a part of the angioma behind.  This would be a bad thing, and would present danger of future re-bleeds.

To go into a surgery as is would present a 10-15% chance of permanent neurological deficit which could be as bad as losing the use of my left arm, losing the use of my tongue, or as little as not having feeling in my thumb.  Simply to access the front of the brainstem surgically is itself a difficult and risky procedure as there are many nerve bundles that need to be navigated through to get to the site.  Having a big bleed that causes a large opening to access the angioma would drop the chances of this permanent deficit to 8-12%.  Not great in either case.

Putting things into perspective, having some slight vertigo and nausea on good days maybe is not so bad when the prospect of losing much functionality that I have now is very real.  I have even corresponded with a nice lady in the past day that took such a high risk procedure and had a bad outcome.  Her prior condition being not too bad, she wished she had never done it and is 4 months into rehabilitation of her walking normally, with likely 7-8 more to go.

So perhaps I can count my blessings that I don't have a neurosurgeon that is overeager to break new ground in my brain!

6 comments:

  1. I'm sorry you're dealing with this....its really tough. To have surgery or not was the BIGGEST, SCARIEST decision of my life. And Dr. Spetzler gave me pretty good odds of doing well with surgery. I felt that either way(surgery or watch-n-wait) it was a decision. It is very personal and only you and your wife can decide what's best after you get as many expert opinions as you need. Your location is very difficult and probably considered "inoperable" by all except the "best of the best". And even with the best, it might prove to be too great a risk. For me, I was so afraid of making the wrong choice....it took me a long time to decide. And I'm really glad I took my time and worked it out ahead of time because when I woke up...nearly half paralyzed I was just happy to be alive. Many people rush into it and regret it later. If you end up worse off....which is always possible....some people get depressed about it and that's a disaster. I feel like most people that regret their decision had unrealistic expectations. Make sure you do lots of research to find what's best for you and your family. Sometimes watching and waiting really is the best choice. You will know.

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    1. Thanks Elizabeth, your story is certainly a testament to the complexities of this. Its good advice to take one's time on this decision and not rush into it. Thanks for your understanding and support!

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  2. Grr . . . Just when you get your hopes up that there is a light at the end of the tunnel, you realize that the end of that tunnel is too damn narrow to squeeze through. I'm sorry to learn of this development. Hang in there!

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    1. As Paul aptly put, I wanted to get all death-star on this thing, but its not yet operational! BAH!

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  3. Josh, I just found your blog and I am eager to read the whole story. For now, I just want to address your recent post. My surgery came a month after the discovery of my angioma. I had a bleed, an MRI, an angiogram, and then brain surgery. Because there was evidence of previous bleeds, the chances of having a catastrophic bleed would increase every year I lived with the angioma. It was 80% in the brainstem and that 20% was enough to make access possible.

    I was told that the surgery was quite risky. There was a chance I would not survive the operation, I could be blind, paralyzed, unable to speak, etc. It was terrifying but the alternative was to wait and hope that the inevitable next bleed would not kill me. Like Elizabeth, it was not a decision, I took lightly.

    Obviously, I survived and with very few physical side-effects. I am very grateful. My only frustration is that I have cognitive deficits and a new personality. Nothing can prepare you for this. My neurosurgeon claimed my symptoms were not possible given the location of the surgery. Research shows that damage to the cerebellum can affect all regions of the brain. I strongly believe surgeons should explain this risk to patients. Even if the changes are temporary, it would be useful to know. I spent two years questioning my sanity because the device I use to understand the world was not working properly.

    Every stage has its difficulties. I am learning to live in the moment and to appreciate what I have now. Elizabeth's blog is a great reminder to have gratitude. Thank you both for all that you share. Josh, it is nice to meet you. I wish you the best. Hang in there.

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    1. Ali, thank you for giving insight into your situation. It seems that you have been through a lot, and it provides a good opportunity to reflect that the unknown outcomes of surgery are vast especially in the areas of those things that are unforeseen and possibly even unknown well in the medical community. I have just read up some on the cerebellum which seems to be a vital and primal brain, and a scary place to have damage from an angioma and surgery. Thank you for the message of appreciating the moment and it seems the surest way to living in peace with this condition.

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