Tuesday, March 3, 2015

Post Op Week 7: Opening up dirty windows and letting the sun illuminate my words, and world

Tomorrow marks seven weeks since that fateful surgery--I want to say life-changing, but not enough time has passed to know if its changed my entire life. It certainly has changed my life for the last seven weeks, however. 

(You may ask how I'm feeling. Well...it seems it is my turn with the virus that has gone through the house, so at the moment rather crappy. But it's the normal congested, scratchy throat, cough, low-grade fever type of crappy, so that's, uh, a good thing...kinda. You follow.) 

The other week, I was going through my downloaded photos from 2014, sorting them into folders and whatnot (hmm, reminds me, time to back things up again). As I revisited images from January to December and recalled the days behind them, I became increasingly aware of this slow, steady decline in my health as 2014 progressed. Images of my activities in March stunned me as they seemed completely impossible for my December self. Looking back over the whole of the year, I became aware there had been this slow, sucking quagmire that steadily dragged me down further and further as time progressed. Toward the end of the year, I wasn't living my life; I was slogging through it, enduring the days rather than enjoying. I fought to keep on top of the mire, seeking joy and hope and optimism, but in hindsight, I can see how through that battle I was nevertheless gradually sinking deeper. 

This is what I mean when I speak of the brightness I now feel—there is a mental energy, a drive, a motivation, a...*radiance* to my world that I’d forgotten about. Second to the loss of my headaches—and they remain completely gone—this is my favorite, most exciting post-surgical effect. I cannot describe it adequately, though I have repeatedly tried. The best I have come up with is my life before was like living life looking through filthy windows while wearing earplugs; now, suddenly the windows are crystal clear and the earplugs are removed. Life is BRIGHT and INTERESTING.

(The title of this blog post references Natasha Bedingfield's song Unwritten, which has been borderline anthemic for me in the last few years. Don't know it? Vaguely remember it from a nearly a decade ago? Do your day a favor and listen again to it and let those words soak into your skin. 

No matter where you are in your life, today is a blank page--where your book begins.The rest is still unwritten.)

Speaking of bright, after reading my surgical report I had a light bulb moment. The gradual decline (beyond just 2014) made sense. I’m not sure if my theory is correct, but I believe my health deteriorated as the decades-in-the forming adhesions continuously grew, gluing my cerebellar tonsils to my brain stem, my cervical spinal cord, and even the arteries in the area, gradually and eventually sealing the opening (foramen magnum) shut. My brain became increasingly deprived of CSF until it was starving for it, and the mechanisms in place to balance intercranial pressure became blocked by the long, lonnng term effects of cranial compression. 

What would have happened had I not had surgery? Obviously, it's all conjecture. Dr. Bolognese told me I would most likely either stay the same or get a little bit worse (in what ways, he didn't say, and it was a rare moment I didn't want to ask), so coming from an expert, that is the most likely scenario. I will say research has repeatedly shown long term CSF blockages can and often do result in hydrocephalus and/or cysts in the spinal cord (called a syrinx; the condition is called syringomelia) in Chiari patients. There have also been many reported deaths with the condition; two just in the last month in the largest online Chiari community to which I belong. I deliberately chose the word “with” the condition and not “because of”—their actual mechanism of death may involve the heart (as was the case with one 28yro Chiari community member) or the like, so it is not recorded as directly attributable to Chiari. There is astonishingly little professionally written about the connection between Chiari and death, particularly in adults, perhaps because its sometimes catastrophic effect on systems controlling breathing and heart rate result in those being listed as official cause of death. What is posted in community forums must be read with a skeptically raised eyebrow, but, there is no question death with and caused by this condition absolutely does, can, and has happened. (There is even an episode of Dr. G, Medical Examiner, highlighting the case of a child who died in his sleep due to a Chiari malformation that compressed his brain stem and silenced the autonomic command to breathe. His Chiari had actually been found in a previous MRI but was so dismissed by the neurologist--an incredibly common experience for Chiari patients--it wasn't even mentioned to his parents. They tragically learned of it postmortem.) I don’t mean to be dark and frightening or dramatic, but I also feel the need to stress how serious Chiari can be, and how misunderstanding/misdiagnosing/ mistreating it can be dangerous to outright deadly. 

But that isn’t me, and that isn’t my reality, and I am grateful.

This, however, is me, seven weeks post-op.  The scar is slowly fading as hair grows and the incision heals.

Is it weird I kinda want the scar to be more visible and less hidden?

Rather...interesting hair cut, hmm? Gonna be a bit longer before I can rest my head in a hairdresser's shampoo sink though.

I am also regular-annoying-cold-sick and quite tired now, so this will be it for now for this update. There’s more I do want to say, but the sofa beckons and I’m eager to answer its call. 

So, until next time—continued love, appreciation, and gratitude to you and yours.

Adhesions are NOT endearing--but they tell an enlightening story

Reading my surgical report has revealed some interesting new details. Even though I updated just a couple of days ago, I wanted to share here as well. 

I previously mentioned how the report said the arachnoid membrane (where CSF is housed--well, technically the subarachoid space just below it) had areas of opacity. Well, it also says this: "Numerous adhesions to the cerebellar tonsils were cut sharply...Other arachnoidal adhesions of the tonsils to both the posterior-inferior cerebellar arteries, the dorsal brain stem, and the upper cervical spinal cord were dissected and divided sharply." 

Now, when I read that, I somewhat assumed "adhesion" meant some sort of normal connective tissue that had to be severed during the decompression and tonsillectomy. Turns out, uh, nope. A quick search resulted in scores of medical-vernacular-dense websites describing the occurrence of adhesions specifically in situations of significant cranial compression. 

It took a lot of reading, parsing, looking up terms, and then verifying on other sites, but the gist is adhesions are somewhat akin to scar tissue (actually, one site described it as such) that can form on the anatomy in the area due to extended periods of cranial compression. 

The best description probably comes from, appropriately enough, a textbook called "Craniovertebral Junction: Diagnosis--Pathology--Surgical Techniques": "The effect of chronic severe foramen magnum [opening of the skull] impaction by the cerebellar tonsils is the formation of arachnoidal adhesions, which may be the primary pathological focus. The adhesions may be quite pervasive, involving the brainstem [in my case and as you see quoted in my report above, yes], posteriointeferior cerebellar artery [yes], and spinal cord [yes]. Microlysis of the adhesions is an important part of the internal decompression." 

Basically, everything was so compressed for so long (uh, 41+ years), it sort of started growing together. This explains what was going on with me even more. Here I am, post freakin' brain surgery, and I'm *still* relieved to see MORE black and white evidence that *something was very wrong* with my brain. (Well, brain, arachnoid membrane, spinal cord...) 

Oh, and incidentally, the arachnoid membrane is called that because of its resemblance to a spider's web. :) 

In other update news, I called the anesthesiologist's billing office and confirmed they had billed my primary insurance, but not my secondary. After I gave her the information over the phone, she was able to submit the claim via computer while still talking to me. So, thumbs up there as well. Yay for two months of overlapping coverage! 

And now, I would like to thank my son Trent for waiting until the 5 week post op mark to get sick. I can stay home with him and just be his mommy. I've been able to make him mac and cheese, play ball in the backyard with him, practice his letters and sounds with him, and otherwise more or less keep up with a 5yro who's almost completely unaware of his fever and cough. Almost. Team Umizoomi and an extra long naptime due to both illness and medication ensure I get my rest as well. 

Thank you all, again, AGAIN, so very much. February may be the month of love, but I've been feeling it long before it rolled around. Much love back from me, us, in return.

Five Week Post Op: Surgical Report reports

Five weeks today. Cuh. Ray. Zee. 

And, apparently in honor of that, I received both my surgical report *and* a bill from the anesthesiologist. Honestly, I'm not sure which is harder to interpret. 

From what I gathered from the surgical report, my brain tonsils were thicker and the arachnoid membrane had areas of opacity but not calcified deposits. (Apparently, the brain has 3 layers of membrane: the dura mater is the outer layer, arachnoid mater central, and pia mater final. Between the arachnoid and pia mater is the subarachnoid space, where CSF flows--thus our interest in the area.) Removal of the offending tonsils resulted in "brisk, pulsatile flow of cerebral spinal fluid" going up into and through all the places it's meant to be. Unplugging the CSF dam let the precious fluid flow. :) 

I also kept seeing that he used a #11 blade, so, there's...uh...that, should you want to go shopping for one for yourself. 

The report is obviously dense in medical lingo, but I get the impression that--as Dr. B said the day of my surgery--things went as expected, both with what he found when he went in and then in executing the plan to do with what was found. So, yay, or something. I'm printing up that report and adding it to my Giant Binder O' Medical Stuff as well as sending a copy on to my PCP. 

As for my bill from the anesthesiologist, it was filled with billed amounts and insurance adjustments. Actually, it's fascinating: inserting the arterial line (the one the monitored my blood pressure with every heartbeat and gave my arms a zombiefied look for a few weeks) had a billing amount of $795. Interesting that's separate. Then there's just a charge "anesthesia services," which must be all the etcetera activities involved in keeping Laura unconscious while her skull and brain are cut into. That billed amount is $10,600, but once insurance paid and the amount was adjusted, and we are left with $939. But! What I realized reading this bill while I typed details here is our secondary insurance was not billed--there's only one insurance listed as paying. So, hopefully we can whittle that down a little further. Initially I thought both insurances had paid, but that's two payments for the two different services. Good thing I came here to talk to you guys to realize that detail. ;) Time to roll up the sleeves and start this fun process--one I have a feeling we'll be in for a while--of contacting insurance(s) and medical office(s) ensuring everyone pays what they should before we start writing checks. 

As to how I'm feeling, in hindsight--much better each day! (Though it's sort of like, feel great today! Ooh, do too much. Feel awful next day. Repeat, but with a gradual upward trend.) I say "i hindsight" because in the moment it's still I WANT TO DO ALL THE THINGS AND MY BODY WON'T LET ME. 

Today, for example, I overdid it a tad (who, meeeee?). While according to Fitbit I average about 6000 steps in an entire day, I was just under 6000 steps by 11am. Whoops. (Pre-surgery, my daily goal was 8000.) "Overdoing it" makes me a bit wobbly as my muscles (particularly arms, shoulders, and chest) struggle to keep up with use. My incision area feels swollen and tender--uh, likely because it is--and my eyes ache from the increased pressure. Huh; I just realized I had a headache, but it's such a cute little baby thing compared to what I lived with before I don't call it that. My scalp is tender and my eyes hurt, and I know exactly why. Pffft. That's no headache! ;) I came home and crashed on our new couch, enjoying the built in recliner, and watched a few hours of mindless television, complying with a "Yes ma'am" to my body's demands to STOP IT ALREADY AND REST. NOW. 

I am noticing a few symptoms that are noticeable and annoying, but not devastating, that have lingered. Most aggravating are the short term memory issues. Seriously. Everyone has this sort of experience, as did I in my healthier days, but this is much more frequent than I ever recall it happening before. It's that feeling of walking into a room and forgetting why, but many freakin' times each day in many different ways. I keep my phone handy to type up reminders, and I swear half the time I forget what the reminder was as soon as notepad opens. I've mixed up procedural items (akin to putting the milk in the cabinet and cereal in the fridge) a bit more frequently than before, too, and my word recollection is a bit slower--sometimes the word is just POOF gone--than before. All of this was experienced before surgery, and as all my symptoms ebbed and flowed (except the headaches), I don't know if this is a true increase in that symptom or just its "normal" turn to be more prevalent than others before taking its place in Quiet Symptom Land. 

The feeling of ants crawling up the head and down the arms and legs ("parasthesia" I've learned it's called) still shows up randomly, sometimes even on my tongue, but it's completely harmless and I shrug them off. I do unfortunately still get body aches that feel a bit like my bones are throbbing, and they do still wear me down. 


The skull-crushing headaches are STILL gone. The tremors are STILL gone. The sleep apnea is STILL vastly improved (I think only a repeat sleep study can confirm if it's gone). 

I brought up my other symptoms not to express discouragement, but only to remain as open and honest about how I'm feeling as I am about finances. Again, I feel I owe it to you all--the entire truth, be it financial and physical. I did say going into this if all that went away were the headaches, it would be worth it, and I have absolutely no question *it was* and *it is.* 

Besides, this is only week five. 47 more to go. 

Hugs, love, and gratitude to you all.