Friday, February 25, 2011

New Symptoms, Full Time Gig Stress

Just when I think I am out of the woods.
Not out of the woods.  photo: Alexander Torrenegra via flickr.

Something has changed in the ramp up to my starting full time March 1st with this company from part time consultant status (the difference between 35-40 hours a week and 50-60 hours, its silicon valley after all).

Some of the symptoms come back in a light way.  Slight numbness of left foot/toes and hand, but more disconcerting is the pulsating pain/pressure that I now have in the roof of my mouth.  I feel it and it seems to coincide with my heart beating.  This is new.  Its unpleasant.  Its frightening.  I notice this peaking particularly while at a conference I am attending on the company's behalf, and towards the end of the day I am having a harder time focusing on the topics at hand and getting a particularly washed out feeling that will be repeated over the next year while under higher stress.

Did I just have a new bleed?  I call to discuss with the neurosurgeon's office, and its suggested that I get a new MRI done.  I just had one done but this had been done with a different medical facility and this new MRI will be done to this doctor's specifications as its the radiology group out of UCSF.

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...

Saturday, February 5, 2011

Outage - In my brain

I am dealing with a systems outage at work today.  Its important and complicated work unraveling a series of events that result in the death of certain machines and tank other parts of the cluster and service with it.

One thing I am feeling while I am doing this is that my head feels like its exploding while I am dealing with this crush of stress.  Its very odd working through this new haze that has come from my bleed a month ago.   

My system reacts very differently to stress now and when the crush is on there is a particular haze I have to cut through to successfully deal with the situation.  Knowing that I have some kind of bomb that went off in my brain does not help things, but this is a physical reaction to stress that my brain and body overall is having.

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!

Tuesday, February 1, 2011

MRI - Rebel Hideout Discovered

Well its official.  I have a cavernous malformation in my brain :(  The radiologist comes back with these findings after reviewing the MRI:
1.0 x 0.4 x 0.9 cm focal lesion in the anterior aspect of the 
medulla most consistent with cavernous angioma.

Here is the picture of my brain that shows this little darling planted in the medulla of my brainstem.

Cavernous malformation in brainstem as seen on MRI taken with contrast, side view

As the neurologist discussed with me later, "Its not that big, its just in the wrong location."  The brain stem controls the vital functioning of the human body.