Good news on the home front!
There are a few medications that have been getting researched for possible benefits for cavernous malformations, one of which is simvastatin (brand name Zocor ™) and is a generic and long studied medication typically prescribed for cholesterol management, and is readily available.
And as of yesterday I am taking this!
So here is the deal... there is no conclusive study that has gone through human drug trials for my condition. But doing drug trials at all is difficult when you are dealing with a rare disease such as this, and only some 400+ patients registered internationally with this condition. There is a drug trial currently started in the recruiting phase looking to test this medication for efficacy, so we'll know soon enough (I hope) if this has any legs.
Besides cholesterol management, simvastatin (and other statins) has been long known and studied to have cerebrovascular protective effects outside of cholesterol reduction and is used to reduce the occurrence of stroke. While there are some risks associated with this medication, this potential use in my case has been vetted with my neurosurgeon, neurologist, family doctor, and father (who is a family doc by training) and basically seems like a no-brainer (and at least no harm likely).
Further, there has been a mouse model study (actual study here!) to test simvastatin on cavernous malformations introduced by a type of genetic defect that is known to cause these. "They tested their hypothesis by administering simvastatin, which is
known to inhibit Rho activity, to mouse models with the Ccm2 mutations
and saw that the drugs strengthened the damaged blood vessels in the
mice." My condition is known to manifest in part a leaky type vascular structure so the hope is if we can stabilize it, maybe I can have a chance to beat this thing free of major bleeds and have a lovely life "neurologically intact".
That would be cool.
So for now 20mg simvastatin daily for me. Wish me luck as I embark on my self-study of 1!