Tuesday, January 7, 2014

Sub Arachnoid Hemorrhage and Brain Surgery - My Experience (1)

Monday, October 28, 2013
The whole family is home.  Teagan and Kirk from LA and Portland, arriving together about noon. Cara and Craig are here and Scott’s recently home from work.  They’re all outside and I just put a rack of potatoes in to bake, turn, am standing at the counter and *BAM*, in a single instant my head becomes an explosion of pain.
The only thing I can imagine is I am experiencing an intense detox from Chinese tinctures started 2 ½ days ago and put myself into emergency mode, managing to drink some water with ascorbic acid to counteract a reaction and to use the bathroom (knowing once I was down I wouldn’t want to move again) before getting to bed, lying flat on my back and trying to scaffold my head with fingertips in a way that didn’t hurt.  No real way to explain it except impossible.  My shoulders and neck become a single mass of tension.  The pain is greatest at the base of the skull and can bear no touch whatsoever until the next day and then only a feather touch to hair, not the skin. 
It may seem odd to some but I believe we are 100 percent responsible for our lives.  And we, in the larger awareness of ourselves, create with boundless love, experiences that ultimately benefit.   Whatever you may think of this, know it changes everything instantly or does so for me.  Knowing I love myself and ultimately have my best interest at heart then this experience is in some way a gift.  At this thought everything switches from one of fear and resistance to one of open receptivity and gratitude.  Whatever is going on here, and obviously it’s big, it will in some way serve me.  I’m suspended in this perspective when Scott comes in. I don’t remember what I said but hoped to convey off-the-charts-not-normal without being alarmist – or worse, whiny.
** what was Scott's experience?
Time is uncertain – after maybe at 30 - 45 minutes there was a minor but definite ebbing to the pain.  Ebbing is good.   Scott goes to explain things to the kids.  I hear subdued sounds, hoping they aren’t frightened and then I respond to a total, compelling urge to send love and assurance to my head.   With intense focus – and believe me there is nothing except intense focus at this time – I start repeating to myself, reassuring the inside of my head as though soothing a child, “I love you.  I love you.  I love you.  It’s okay.  I love you.  It’s okay.  It’s okay.  Everything is okay.  I love you.  It’s all going to be all right.  It’s okay.  I love you.” 
I feel comfortable with the idea that this and the vitamin C may well have been what saved both my life and my faculties. 
Two Allieve’s followed soon by some of Teagan’s Excedrin for migraines, the pain is intense but no longer impossible.   I sleep well enough through the night and the next day juggle over-the-counter medications to keep it at bay and everyone manages to give me both space and the pleasure of their company as we hang out on the bed visiting like we did when they were little.  Teagan and Kirk head back to Portland about 1pm. 
Wednesday, Oct 30th, 2013
Scott is back to work and the kids back to their lives.  The headache continues its slow ebb and I balance Allieve, Excederin and bed rest between small bits of cleaning up and laundry, taking great care with any altitude changes to minimize intense pounding.  Cara comes in with pictures of herself all gored-up having participated in a mega-haunted house event late last night.  It looks like great fun and since Scott and I hardly ever do such things, it seems a good idea to try it out with Cara and Craig leading the way. I send Scott a text to plan on it, 7pm.   
About 5 pm I decide to search the internet, google “sudden extreme headache” and  find  “thunder clap” headache, characterized as sudden and “the worst headache of my life,”  
Wiki: A headache is called "thunderclap headache" if it is severe in character and reaches maximum severity within seconds to minutes of onset. In many cases, there are no other abnormalities, but the various causes of thunderclap headaches may lead to a number of neurological symptoms. The most important causes are subarachnoid hemorrhage, cerebral venous sinus thrombosis and cervical artery dissection.[1]
NOTE TO ALL: if you experience such a thing GET YOURSELF TO AN EMERGENCY CENTER IMMEDIATELY!  Don't get on Facebook and post, “To all those who experience migraines, my apologies. I just experienced my first and clearly I have not been sufficiently sympathetic,” like I did.
I try to not be alarmed but those are some scary sounding words, ones perhaps I shouldn’t pooh-pooh.  So I call my doctor with apologies for waiting until after hours but here’s the story.  He’s calm, says, “it sounds like it might be okay …but,” and with a sweet tenderness, “this is your brain…”  and makes a call to KGH Emergency to get their opinion.  Within a half hour we are on our way.  And Scott, poor babe, is just home from a doozy of a day and more worn out than I ever see him.
Soon I am triaged, admitted and gowned.  The ER doctor is also calm.  You seem to be doing fine but a CT scan, he says, will helps us rule out other possibilities.  We’ll have the results by 8pm.  Scott has been texting Cara while we wait.  Clearly the haunted house is off and she’s on her way to hang out with us.  8:00 comes and goes.  About 8:20 the doctor returns with clearly a more serious face. 
“The CT scan shows there was some bleeding in your brain.” 
My eyebrows rise.  Totally didn’t expect that. 
 “But it isn’t bleeding now.” 
 I relax because that’s good, right?  
This is when we first hear the term Sub Arachnoid Hemorrhage (SAH) and aneurysm.  Between the skull and the brain is a buffer space of fluid surrounded on both sides by a protective webbing, like a spider web – the sub arachnoid.  (This we learn not from the doctor but from Cara after she and Craig arrive.) “We aren’t equipped to help you here so we’re sending you to Kadlec Medical Center and are arranging transport now." 
If we asked questions I don’t recall right now.  We did look at each other, raise our brows and say, “Looks like plans have changed for the night.”  You will find throughout this coming adventure, Scott and I, either by ignorance or avoidance, never quite seem to grasp the severity of things for hours or, on occasion, days later.
The doctor returns shortly.  “Kadlec doesn’t have facilities for what you need so we’re sending you to Harborview Medical Center in Seattle.  They will do some test and keep you a couple of days for evalutaion.”  I know my eyebrows go up this time.  I look at Scott, “Looks like we’ll be taking a drive tonight.”   “No”, the doctor says, “you will be flying.  Your personal plane will be arriving at about 10:15.”   He steps out. 
I sit up; look at Scott, there’s a momentary quiver to my voice I quickly squelch, “holy shit!  I’m being medevac’d!” There is the unreal mixed with gratitude.  Gratitude I made the call.  Gratitude we are here.  Gratitude such things are available.  The unreal is what this all means.  I’m not afraid.  There is rosiness to Scott’s cheeks.  He gives a little laugh, “you know, suddenly all that crap today doesn’t matter.”   Which seems to sum things up, amidst the unreal we are suddenly clear and alert though not afraid. 
Cara and Craig arrive.  Cara quickly grasps the story, is fully engaged, clarifies with Scott on who to contact and heads home to pack me bag.  Scott and I discuss his going with me but it seems unnecessary.  We’d be stuck there two days without a car and no easy way to get home.  He’ll settle things up at school and drive over in the morning.  This feels right for us.  What we don’t know now but I am soon to learn on the plane ride is that it won’t be two days but two full weeks - in Intensive Care no less, carefully monitored and enduring what they call the **** (there is a term, a euphemism I can’t remember - something like “the gauntlet, or the “ICU dread.)”   For the next two weeks I will be awakened every hour on the hour, evaluated and watched for any changes that might signal a brain spasm or stroke.  At the moment, however, we are blessedly ignorant of this.  We’re pretty sure doctors are practiced at slow delivery of information so as to not overwhelm.  (Scott later learns if the hourly monitoring continues into 3 weeks it can create a psychosis.  Again, we are fortunately ignorant of this for the moment and it never has to be our experience.)  
The moment of quiet is over and there is now much flurry with people coming and going. They need at least two IV ports and my veins are being reluctant so another person is brought in to try.  My blood pressure spikes to 175 so something is given to bring it down.  Then it spikes to 212.  With the IV in place they attach a bag with another potion and the pressure begins to drop.  They need it below 140 before I get in the plane.
Cara and Craig return with a well-appointed bag.  The plane arrives, my nurses Bob and Chris introduce themselves and I am shifted to a gurney, strapped in, wheeled to the hall, hydraulics raise me up so Scott is eye level when he comes to give me a kiss.  Cara is on tippy toes  - and we’re out the door.   
I wonder how it is all sitting with Scott and Cara then let go knowing they are doing what they need to do and give my attention to my present. 
An ambulance takes me to the Richland airport.  A bar resting on my chest is attached to a hydraulic arm and I am hoisted at a slight tilt into the plane.  “Mr. Abe Lincoln here will be your pilot,” Chris says, and I get a quick glance at what looks like a period-appropriate beaver skin stovepipe top hat.  “He’s been working on that beard a long time,” and I get another corner-eyed glimpse of a slight build and a rich mat of russet beard as they heft me the last bit into the plane.
I’m alert, hyper-alert probably, chatty and compliant.  I’m well aware the urgency and earnestness being attended on me and the headache persists but I am not afraid.    I learn from Chris how, before they had the hydraulics, they had to push the gurney and patient up a ramp then hoist them the last part by upper body strength alone.  I watch the monitor above my chest.  This is also when I learn it will be a two week stay. 
It is dark and intimate in the small plane lit only by small task lights.  I take up one side of the plane; Bob and Chris take up the other though I can only see Chris.  They talk quietly into headsets, relaying stats and updates.  I don’t remember if it was in response to something I said, or what, but at some point Chris stopped what he was doing, closed the lid to the computer on his lap and looked at me.  So honest, so straight forward and caring a look, and said to me, “I don’t know if you’re aware how atypical this is for us.  We don’t usually have the pleasure of talking with our patients.   Typically, by this point something very essential about them is already gone and lost.  You’re not out of the water yet but you are strong and healthy.  This is a real pleasure for us.  You are very fortunate.”   I had been spending every quiet moment being grateful, wrapping myself in an awareness of gratitude for a universe that loves me, for the doctors, the hospital, being in a first-world country such things are available, -having  insurance.  Chris’s words, so genuine and honestly given, took that feeling of gratitude I had been very intentionally building and permanently locked it in place behind my ribs and it stayed there for the duration of my stay in the hospital.  He called Scott that night to let him know I had arrived and that all was well.  He called Scott again the following evening to check on how I was doing.   Scott was there with me then so I was able to talk with Chris and tell him directly how important his words were to me. 
Triage  at Harborview Emergency is a happening place.  I’m asked my name, do I know the date, where I am and why I am here.  The hourly vigils begin.  There is a sudden, collective gasp of surprise followed by laughter as I’m shifted from the old gurney to my new one. “Well that was unexpected.”   
I guess black Vibram 5 Fingers aren’t the norm.
New IV’s are set, one with two ports at each arm and fluids are pumping. I am well communicated to by each new doctor – and there are many.  I will be placed in ICU as soon as a room is available and taken for surgery first thing in the morning and here, sign these papers giving us permission to treat.  They let people with brain trauma sign things? (I believe this is the first time anyone mentioned surgery.) I am taken for one CT scan and then another, the second using a contrast dye (an iodine solution) to give detailed images of the aneurysm.  The contrast dye injected into my veins gives an curious flash of hot throughout my body in one heartbeat and subsides after a few more.   
The first option for my surgery will be angioplasty in which they go through the groin into the artery, up into my heart, up the neck and into the brain where a piece of platinum wire will be extruded, coiling upon itself over and over again until filling the aneurysm allowing the blood to flow freely without diverting into the bulge. It is expected to clot on its own and effectively heal itself.  If the aneurysm proves inaccessible in this way they will go inside and place a clip on the aneurysm.  This they all explain very clearly without ever really giving the nitty gritty of artery/heart/neck or saying with the clip we have to open the skull, with the coil we don’t.   They keep things in very general terms and express simply –the aneurysm is very accessible and we feel confident the coil will do the job– that will be it - it will be a done thing.
Between events I go inside and give thanks for my healthy body, the facilities made available to me and the doctors giving attention to my care.  I send love to my brain, my family, the doctors and the people around me.  I give thanks to Creator and the Infinite Universe of which I am a part, which loves me and which conspires on my behalf.  I will spend a great deal of my week focusing on this kind of practice until I come again and again into a very quiet, calm, loving, it-is-all-okay kind of place.   
To my right of me (I’m still in Emergency awaiting a room) is a guy I’m guessing in his 60’s and a vet.  I can’t see him but I hear everything.  The curtains offer visual privacy only.  The doctor’s manor is genuine, the questions straight forward and the vet answers with same.  He’s got all kinds of things going on, diabetes, high blood pressure, can’t get around well, hepatitis and host of other things.  He doesn’t drink, doesn’t smoke but does use meth to get through sometimes.
Beyond him is a woman, I hear her details as interns make their rounds.  She was found passed out in the bathroom of a bar and unresponsive. It takes a while but in time she begins to come around.  It’s longer yet before she can respond to questions.  I am again and again impressed with the genuine care and humanity of the doctors who carefully explain, question and suggest what they can to find a path best for each particular person.  Days later while visiting me in ICU, Cara overhears a nurse bad-mouthing a wife who wasn’t coming to see her husband dying of cancer and seeking assurance he was going to be okay even if she wasn’t there.  The doctor called the nurse on it, giving her a gentle dressing down, saying we can’t judge what’s going on for anyone.  She may have been working two jobs the last three years trying to hold things together caring for him and has young children at home needing her.  We don’t know.  We don’t judge.  We give them the best care we can.  

About 3:30 a.m. I am placed in ICU.  It is Halloween and I’m scheduled for surgery in a few hours.

 Every time I meet a new doctor – and there are many – I am asked the story of why I am there; “I’ve read your chart, but just to be sure I’m hearing it right I’d like you to tell me what happened.” I do this many times over the next 10 days.  Always I am clear, concise and helpful, doing my part to keep us all on the same page.  It is only after I am released do I realize they weren’t asking my participation at all but assessing me at every turn.  They’re cagey that way.   After I was out of ICU the neurological nurse confessed even the way she moved around the room was purposeful.  How I tracked and responded to her told her volumes about how I was doing.

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