Thursday, February 10, 2011

Don't Operate, but Don't Worry (Much)

My 1st visit with the neurosurgeon!

My father flies up to join me from Southern California.  We have a nice time with lunch and the drive up to UCSF.  This is a nerve racking experience and I am very anxious, it is comforting to have such good company and to help provide input during the surgical consult.  Since this was a rush appointment and we are being squeezed in, we are told that wait will be some time.  The view from the waiting room is amazing and a lovely way to ease into what is an otherwise nerve-wracking consultation.  Points for ambiance!
view from UCSF

There is some good news here, and its all in the silver lining.

Normally it would be suggested to do the surgery immediately, however my cavernous malformation is covered by 1-2mm of healthy brain tissue, and it is 10-15% likely that I will have a permanent neurological deficit by the time the surgery is done and potentially long postoperative recovery.  He would be willing to operate and the choice is mine whether I can live with this thing in my head, but it is not a good amount of risk to take.

Because of the location of my angioma, even when they do normal mapping of the brain tissue to figure out what to cut through to gain access, there is much risk since the location is close to things like:
  •  Sympathetic system, vagus nerve
  •  hypoglossal, nerve for tongue
  •  cranial nerve
  •  sensory nerves
  •  motor tracts
Is this the same thing as saying its inoperable?  No!  But its an assessment of risk, and not a good one.

The recommended approach is to wait for another bleed, hope that the new one ruptures past the healthy brain tissue so there is direct access.  So we go into conservative management mode...

So what are the risks presented with going the conservative approach?

see the silver lining?
Quite good apparently! Instead of the 20-30% annual chance of a new significant bleed as some literature suggests, the doctor suggests its more likely in my case up to a 5% annual chance recurrence and only 1/10th of these those with bad outcomes.  What is a bad outcome... apparently a patient earlier had had a bad bleed and ended up in a coma and was recovering from a surgery which revived that person.  This is an amazing shift of 5 time better odds than what I had been thinking so I'll take it!

Further when discussing what can be done to prevent another bleed I am told:
"nothing you can do to make it bleed, nothing you can do to prevent it"
Not only are the risks downplayed but there is a new lease on life here and a strong sense of fatalism.  I need to just go live it, and hope and pray for the best!

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