Wednesday, May 2, 2012

The Experiment Continues with Atorvastatin

A quick update on my statins experiment...

Initially I tried going on simvastatin 20mg, taken nightly before bed.  It was a disaster.  :(

Taking simvastatin I ended up feeling as worse as I have for the past year with symptoms arising that were similar to the beginnings of my hemorrhage a year ago, after only 4 days on the medication.  It was very scary as I thought I might be at the beginning of a new bleed, it was that bad.  Thankfully the progression stopped after I ceased taking the drug and I recovered within a couple of days.

I ended up with fairly fast symptoms exacerbating my usual numbness after taking simvastatin at night and would have insomnia from it (from feeling bad all night). The next days after taking simvastatin would be fairly poor with increased nausea, and numbness on the worst day was extensive with backs of arms, back of ears and pronounced in feet, hands, mouth, tongue. The characterization of the numbness was unusual in its severity especially, but extensions of my usual symptoms associated with my cavernous malformation. I had some headache associated with taking this also, and some muscle soreness which was fairly light.

So now I am switching to a better statin called atorvastatin.  One thing that promises improvement in taking it for my condition is that while simvastatin has a half-life of some 2-5 hours, atorvastatin has a half-life (including active metabolites) of 14-25 hours.  Since I am going for a potential stabilizing effect for my cavernous malformation, having more of a sustained stream active effect in my system seems like a better idea, and even for cholesterol management atorvastatin usually trumps simvastatin and this is partly attributed to its respective half life.

So I have been trying 5mg daily atorvastatin and already found a limit there after 5-6 days where symptoms especially nausea are not tolerable, but no where near how bad the simvastatin was!  So after a few days here of detoxing I am trying a further reduced dosage, and hoping I can get to a level where I can live with it and still have some potential benefits.

My experiment continues!

Wednesday, April 11, 2012

A New Hope

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!

Sunday, April 8, 2012

No More Hangovers!

I went on a great vacation down to L.A., and Palm Springs this week.  Visiting family, great weather, golf, pool, lovely!  I might have had a few drinks on a couple of nights.  But the next morning I don't suffer the consequences anymore!

Its great you know because I can't seem to notice getting the usual bit of a hangover that I would expect, you know slow start on day, bit of nausea etc.  Because I usually feel that way anyway, and is just blends in! :P

So my new normal has some upside, woo-hoo!   Party on then!

Tuesday, April 3, 2012

By the Numbers - Surgical Risk Presented

My favorite way to play the odds in Vegas!
Armed with some fresh data, here is an analysis of what has been presented by my neurosurgeon in terms of surgical outcomes for the removal of my brainstem cavernous malformation...

Doing surgery now:
  • 10-15% chance of new permanent neurological deficit, could be as simple as losing feeling in finger, or losing ability to move on left side of body.
  • 93% chance of successful resection, or 7% chance of failure leading to likely bleeds in the future as its not fully removed
Doing surgery after a hemorrhage external to the cavernous malformation that also creates a large opening in front of brainstem (a lot of maybes):
  • 8-12% change of new permanent neurological deficit
  • 95% chance of successful resection, or 5% chance of failure
Its worth acknowledging that these generic odds are extrapolated from the clinical experience of an expert but they are not necessarily my odds.  But look the world isn't perfect and its what I have to work with.

In my review of case studies and discussion with those that have had surgery, I will for simplicity say that having a failure during the surgery is a bad outcome on par with acquiring a new deficit.  Its a simplification but what is clear is that any brain surgery itself is a traumatic event and requires lots of rehabilitation (many months or more in some cases), and unknown consequences.  Some people even have stokes during their brain surgery or as a result of!

So to boil this down and oversimplify:
  • Now: 17-22% chance of poor surgical outcome (22% pessimistic)
  • Ideal: 13-17% chance of poor surgical outcome (17% pessimistic)
So WAIT!  you must be saying.  Because I know right the odds really don't get that much better, (20% relatively fewer poor outcomes).  That is why a substantial part of this analysis is how I am doing now, and that I should really be much worse off than I am before doing this makes sense, so that the risk/benefit analysis starts to play out better.   Perhaps getting further damaged from a bad surgical outcome when I am already more damaged makes good sense on the trade-offs.  As my neurosurgeon put elegantly in a doctor's note recently, I am currently "neurologically intact".

So playing this out... one meta study (a study of studies) seems to indicate that from brainstem cavernous malformation, the risk of a new hemorrhage is about 20-30% annually after the first clinical event and decreases over time especially after the first 2-3 years.  In one study the progression went like this for cavernous malformations generally (not just brainstem): 20% year-1, 13% year-2, 12% year-3, 5% year-4 and 5% year-5. 

Data on getting new problems from these bleeds is scant, but seems about 1/5-1/3 of these can result in a new permanent neurological deficit, so we might be looking at 4-10% annual chance initially of acquiring a new permanent deficit from the CM, and declining from there if it stabilizes, and a series of years might look like 7%, 4%, 4%, 2%, 2%, ... -- on acquiring a new permanent deficit from a new bleed.

So the trick here seems to pray for the best, hope it stabilizes, help it stabilize, etc.  No?

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!

Wednesday, February 29, 2012

Paying for it

I had the best days ever, and now I am paying for it.  Pretty typical gig that there is a one to two day lag on whatever I did to my feeling bad from it.  This Sunday I have felt as sick as I have for a year since my first clinical bleed.  I am pretty nauseous, when I get up and walk around I am a bit wobbly and disoriented in terms of balance.  Its like a light case of vertigo.  Its not terrible but I am not well.

Continuing through Monday and Tuesday I get twinges of vertigo when I turn too quickly and do mundane things like unloading the dishwasher.  Its not pleasant and I cannot do much of this before needing to lie down and let the nausea subside.

Fortunately I can sit in front of the computer a bit, its just turning my body and head that is slightly problematic.  I am starting a fun project organizing our 20,000 digital photos with Picasa and dealing with some old scans from my childhood.  Good times.  Its actually quite nice to help contemplate life to see the generations unfold like this before my eyes, especially the facial recognition that often gets my kids confused with me as a kid.  Sweet.

I had some awesome days Friday and Saturday, and would do it again, but clearly there are consequences of trying to live a more normal life.  It remains to be seen if there is a new-normal I can sign up for here.

I have an MRI scheduled in 10 days or so and a follow up with neurosurgeon in 2 weeks.  In light of my not being able to live a more normal life I am increasingly interested in revisting a surgical option here.

Saturday, February 25, 2012

Best Days Ever!

I had the best couple of days here with my family.  Pushed myself a bit and it was great.

First, Friday we go ice skating.  I realized while doing it that doing things like holding up kids while skating around the ice rink is likely generating internal pressures that are not good for me.   But its a blast.  Our kids are delighted with the experience, and we are having a great time.

Then, Saturday, its a beautiful day and we go hiking around Vasona lake reservoir.  I am not holding myself back much like I usually do these days.  Our kids are on bikes so this involves doing a little jogging at times to keep up and take care of them.  My wife and I have our hands full.  This is my little experiment to see if I can live a more normal life with this thing, of which I am not so sure.

Boy were these wonderful days with the family.  If I can have days like this with my condition life won't be so bad.