My Life as a Semicolon ; ): Quiet Desperation

Sunday, June 30, 2013

Quiet Desperation

Despite the somewhat downbeat title, this entry is actually mostly good news – in a world where "no news is good news".

I went to see my neurosurgeon in Boston a couple of weeks ago, had a new CT scan done, and you know how I love sharing pictures of my brain. So, below, I give you those thousands of words, including the radiologist's report for anyone who cares to dig in to the medical jargon. My doctor's general interpretation was that the scans showed no new damage or re-development of the aneurysm, so that's all good. And that the clips holding the neck of what remains of my aneurysm are still intact (also good). In fact, he said he wouldn't request another of these scans for another two to 2-1/2 years. I have pressed him a bit on the possibility of getting a functional MRI , which would be very colorful and potentially show how my brain has remapped around scar tissue caused by the stroke (which I've recently been amused to learn can also be called a "brain attack"), as well as perhaps showing how brain cells have even regenerated in my right hemisphere (if that's even possible). I would consider it a picture of my New Brain. Insert, "Why, I've got half a mind to..." joke here.

So why Quiet desperation? Whenever I go in for scans like this, I find I have to prepare myself to some extent for bad news and question what lengths I'd even be prepared to go to remedy unexpected problems. Even though I've been feeling fine and didn't suspect any changes, I had to gird myself. If I do have an fMRI performed (insurance has to agree, since it isn't medically necessary), I'll have to do the same, despite the fact that the goal of the scan has more optimistic intent – instead of looking for damage, I'd be looking for healing. But the sword is double-edged – my doctor said he would not normally request such a scan, because just talking to me about how I feel I'm doing, observing my progress, and noting the areas of my life in which I've returned to some level of normalcy (driving, work) provides a meaningful gauge of how I'm healing. Even the fact that I'm curious about an fMFI, he considers a positive sign. That said, I've been down that road before of expecting better results than I received – most specifically with the neuropsychological evaluation I expected to pass with flying colors but which ended up identifying more deficits than I feel accurately portray my day-to-day performance.

Now to the pictures:

Left is right & vice versa, light grey is healthy brain tissue, dark grey or black is scar or dead tissue, reflection is from aneurysm clips.

Arterial view. The reflection is still clips and what's left of the deflated aneurysm.

Highlights my big nose, the aneurysm clips, and the zipper on my fleece.

Pretty similar but somewhat emphasizes the portion of my skull that was replaced.

My plastic skull.

The Radiologist's report:

COMPARISON: CT head Maine Medical Center 8/7/2012, CTA 6/9/2011
TECHNIQUE:
CTA of the head with and without contrast. 3D post-processing of the images was performed, and the post-processed images were used in
interpretation.
FINDINGS:
CT BRAIN:
There are postoperative changes of prior right frontal temporal craniotomy, giant right MCA aneurysm clipping, and synthetic cranioplasty flap
placement over the right frontal temporal convexity. There is an unchanged appearance of multiple aneurysm clips, as well as calcium from a
collapsed thrombosed aneurysm.
There is unchanged encephalomalacia in the right frontotemporal parenchyma with ex vacuo dilatation of the right lateral ventricle. There is
unchanged dystrophic calcification adjacent to the region of encephalomalacia. There is atrophy of the right caudate and right cerebral
peduncle.
There is no evidence of acute intracranial hemorrhage, new mass, or new territorial infarction.
The ventricles, sulci and cisterns are unchanged in appearance.
Scattered paranasal sinus opacification is present with right maxillary retention cyst The mastoid air cells are clear.
The orbits, soft tissues, bony structures are unremarkable, except for postoperative change described above.
CTA HEAD:
Examination of the aneurysm is limited secondary to metallic streak artifacts from aneurysm clips. There is an unchanged appearance of mild
prominence of contrast enhancement in the area of the surgical clips that may represent minimal persistent flow through the MCA aneurysm.
The remaining arteries are unremarkable, with no hemodynamically significant stenosis or aneurysm identified.
CT BRAIN:
Unchanged findings of right frontal temporal craniotomy with synthetic cranioplasty flap and giant right MCA aneurysm clipping.
Unchanged right frontotemporal encephalomalacia.
No acute intracranial hemorrhage, new territorial infarction, or new mass lesion.
CTA HEAD:
Unchanged contrast opacification in the region of the right MCA aneurysm that may represent a small amount of persistent flow. No other
intracranial aneurysm identified.

The real quiet desperation

In addition to my medical travels to Massachusetts, I also recently took a more spiritual journey to The Bay State – driving to Walden Pond to meet my dear virtual and flesh-and-blood friend, Jeniene. When the park turned out to be closed, except for the gift shop, I think Mr. Thoreau would have been pleased with how we reclaimed our day and let the time carry us wherever it cared. Oddly enough, despite being the Thoreau quote which resonated most with me in my youth, quiet desperation doesn't sell well on a t-shirt, so I instead bought a magnet of the much-more-uplifting but no-less-resonant, "I know of no more encouraging fact than the unquestionable ability of man to elevate his life by a conscious endeavor." Our unexpected change of plans (we were originally going to spend the morning at Walden) led to a serendipitous chain of events as we consciously endeavored to lose and find each other a couple of times but always managed to reconnect via cell phone, including a pit-stop in a strangely-familiar parking lot (my visual memory works!) which turned out to be the location where I married my Best Man (meaning I was the officiant at his wedding) in 2009 and had a very nice lunch in a pub in Waltham (while she and I have bonded mostly over Facebook, our face-to-face interactions always confirm we have much more in common than illness. So as my first bona fide road trip since getting my license back, it turned out to be the perfect expression of what good things life delivers sometimes when you just let it. That's the "song" I think Thoreau was talking about.

My Life as a Semicolon ; )

Sunday, June 30, 2013

Quiet Desperation

Now to the pictures:

The Radiologist's report:

The real quiet desperation

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Activities	Immediately after Stroke(early Oct. 2010)	When I left MGH/arrived at NERHP(mid-Oct. 2010)	When I left the rehab (12/21/10)	Now (02/21/13)
Eating	I started with an an NG-Tube, which was inserted during my original surgery and soon was given a G-tube, during a separate surgery. My primary source of nutrients was called Jevity, which is not as much fun or tastyas it sounds.I actually have no idea what it tastes like, but it looks and smells like a combination of coffee milk and Yoo-Hoo	Still on an all-liquid diet of Jevity through my feeding tube.	Early in my stay at the rehab, I took a Modified-Barium-Swallow test with my speech therapist in order to confirm that the stroke had not damaged my ability to swallow or my gag reflex. After passing the test, I was allowed to eat solid food, though even that came in stages. For instance, I rememberthe first group of foods were "mechanical soft" and I drank "nectar thick" liquids"	I try to eat a healthy diet and have no specific restrictions.
Therapy	approximately one hour a day of OT and PT.	approximately three hours a day of OT, PT, and speech therapy (speech encompasses talking, drinking, eating, and cognitive functions.	approximately three hours a day of OT and PT. I was discharged from speech therapy relatively early on, once it was determined that my cognition, speech, and swallowing were relatively fine	After leaving inpatient at the rehab, I began outpatient OT and PT twice a week and also had in-home OT and PT twice a week. after receiving the results of my neuropsych evaluation, speech therapy was added back in. I then had to eliminate some therapy in order to free up time for my return to work. In 2012 I did no formal OT or PT but tried other forms of therapy like chiropractic and Feldenkrais. I am also going to try craniosacral therapy. I've regularly seen a psychologist throughout my recovery.
Walking	None	None	walking with close supervision and the support of an AFO brace and quad cane	walking independently, with the support of a KAFO brace and a straight cane, now equipped with a standing tip(which I love). I periodically walk without cane or brace, when the occasion calls for it (like carrying something).
Toileting	during my original surgery, I was given a Foley cath– an internal catheter – which remained in place for quite a while. It think after not producing enough in my catheter bag, I was given another internal catheter – this time a Straight cath. They can only stay in for relatively short time,I think, so I was granted the opportunity to try aTexas Condom Cath. After that proved unsuccessful, I was given what was simply called a Urinal, but which I referred to as my "pee jug"	Urinal	urinal at night, toilet during the day	all toilet all the time; no assistance required
Bathing	bed/sponge baths	bed/sponge baths,though after about two weeks inpatient at the rehab, I started showering periodically with assistance	showering, seated, with minimal assistance	showering, seated, with no assistance, standing with some assistance
Dressing	maximum assistance required	maximum assistance required	some assistance required	no assistance required, except with some jackets and zippers
Balance	could not stand or sit up straight	could not stand or sit up straight	could stand and sit for short periods of time	can stand and sit without assistance for relatively long stretches of time
Left Leg/Foot	no movement	no movement	large movement from hip and quad.weak in hamstring. no movement in ankle or toes	still weak in hamstring, but much stronger in leg overall. Some ankle motion, but nothing in my toes.
Left Arm/Hand	no movement	no movement	large movements from the shoulder and bicep. Some hand grip. No finger extension.	similar to when I left the rehab, though large movements are easier and my grip is a bit stronger.
Speech	Little and/or slurred	slurred Jamie often remarked that I had a "flat affect."	relatively clear.	most people say they don't notice any issues with my speech, but I still notice some slurring when I raise my voice (which, of course, never happens in a house with two young boys) or when I try to string together too many thoughts or syllables at once; I can't seem to whistle like I used to, my pitch is a little off when singing; and I can't curl my tongue anymore.
Pain	negligible	negligible	negligible	headaches periodically, but no general pain
Aneurysm	primarily removed	no change	no change	as far as we know, no change
Seizures	gone	no change	no change	gran-Mal seizure while sleeping, in August 2012.
Skull	a portion was missing (on purpose)	no change	cranioplasty completed	scars are healing well. There are some "irregularities" in how the plates have healed, especially with the plastic skull flap. That's not unusual. Sensation is returning to areas of my scalp where nerves were severed during surgeries. Sometimes this can cause odd sensations, but not pain per se. I do have some pain when yawning.
Medication	antiseizure meds,Heparin anti-clotting shots to my belly (which is standard for bedridden patients), beta blocker for high blood pressure, though, that was primarily a reaction to my heart episode, not an actual issue with high blood pressure; Lipitor to lower cholesterol, though, that also was prescribed primarily in reaction to my heart episode and the stroke. Baclofen for spasticity.	no change	no change	I'm no longer on the beta blocker, since my blood pressure has stabilized. I've also reduced my Lipitor intake, because my liver enzymes were not reacting well with it.Since I am no longer in bed as much, I did not need the Heparin shots once I returned home. Anti-seizure meds were increased after my 2012 seizure. Lexapro for mild depression.
Heart	some sort of heart episode had occurred, but no direct cause – other than brain surgery – was identified	no change	chemical stress test did not identify any long-term damage caused by heart attack or risk factors for future concerns	no change
Falls	None, though if I had been left alone, I certainly would've fallen over	same	no falls during my time at the rehab, though, I had a couple close calls during transfers from my wheelchair, or when trying to move too quickly	I've had a few falls at home, up through 2012, but have also regularly practiced getting up from the floor during PT. I have to be cautious but not fear falls
Wheelchair	the only way I could be moved was by wheelchair or gurney, primarily gurney	same	I did use the wheelchair for "long"trips down the hall.	When first at home, the wheelchair was the easiest way to get me around or in and out of the house and car. I no longer use it except on excursions that would require a great deal of walking, such as at the airport.
Stairs	None	same	some use of "practice stairs." And actual stairwells, always with supervision	when first at home, I stayed on the ground floor of the house at all times, but now go upstairs to sleep and shower, as well as down to the basement for exercise. I still mostly go one step at a time (as opposed to stepping "reciprocally"), but only need supervision when there is no railing on my right side – up or down. Regularly exercise at work by reciprocally climbing three flights of stairs.
Driving	none	same	same	Car modified for one-handed operation, I got my license back at the end of January 2013.
Sleep	this fight, the noise of the hospital, I generally slept okay. I was pretty exhausted and at times still groggy from anesthesia.	same	I went through some periods of sleeplessness due to noise in the rehab and was given some sleeping aids, which helped.	I've been sleeping pretty well, aside from typical interruptions of young children. Diagnosed with mild sleep apnea in February 2013.
Work	none	none	none	From 7/11 through 12/11, ramped up from part-time at home to fulltime from home . From 1/12-6/12, ramped up from part-time in the office to fulltime in the office, which continues.
Mood	upset by my circumstances but generally positive	same	same	I think working has given me a boost to a certain extent. I try to be positive, though certainly get frustrated at times. I'm also on Lexapro, in part because a study showed a connection between SSRIs and neurological healing. At worst, the study found that patients were less depressed and more motivated to work toward recovery.
Exercise	Little to none	same	I considered all therapy to be exercise.	Again, therapy has been exercise. Without formal therapy, I do regular stretching and have recently added a treadmill to our inventory of equipment. This will hopefully help improve my stamina in preparation for time in the office, as well as help me focus on walking pace and form. I've also been using ourWii balance board, which includes fun, but safe ways for me to put my balance to the test.
Tactile sensitivity	slightly diminished– if tested subtly, for instance, with a Q-tip, I could not easily identify which finger on my left hand was being touched.	same	improved	relatively normal, though I am somewhat hypersensitive to heat and cold.