Wednesday, February 2, 2011

Post Diagnosis - Mad Scramble

The next 10 days are a mad scramble!

1st is to find out about this condition.  There is not much information out there that is readily accessible.

One excellent resource is the Angioma Alliance, and there is much here about the condition itself for those newly diagnosed, community forums, newsletter, etc.  I would highly recommend to start here for understanding the condition!  My father who is a doctor helped acquire some excellent medical literature and the one that most stood out in understanding the condition in depth is this paper:

Brainstem cavernous malformations: anatomical, clinical,and surgical considerations

Through my reading and analysis it seems that having a cavernous malformation (aka cavernous angioma) in the brainstem with a recent bleed / hemorrhage (or ICH intracranial hemorrhage) is bad news with a annual re-hemorrhage rate of 20-30% at least initially.  This is pretty scary.  But its not clear what this means, whether it applies to my condition and so on.

Further apparently if there is surgery to act on there is apparently a window of time after a bleed where the surgery is better performed during and as it has been over a month since the initial event.  Thus I am in a rush to get to the neurosurgeon that can make this call...

I have been trying to identify the best neurosurgeon to treat this condition.  My father suggests as this condition is more rare it may be worth flying to the best to get the treatment that is necessary even if they are located elsewhere in the country.  I initially get a referral to the UCSF neurosurgery department as having the best expertise for this type of condition in the San Francisco Bay Area.  Getting the referral expedited and cutting through the red tape to get through their neurological center is an initial challenge as they want the initial referral to work up before surgical consult.  I nevertheless get the appointment with the neurosurgeon and its scheduled for Feb 10th.  My father will be flying up to join me, and his support has been incredible through this scary process.

Going parallel on this, I contact the author of the above paper to discuss my situation further and offer to send my MRI scans for review.  The author confirms that the neurosurgeon that I am scheduled to meet with is one of the best in the nation!  I feel pretty blessed to have access to some of the best medical care out there.  I also begin reaching out to the UCLA neurosurgery center for patient pre-screening but there is a lot of paperwork here to get through and this will take some time.

My meeting with the neurosurgeon is tomorrow!




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