Tuesday, February 10, 2015

Abby-Normal-Be-Gone: description of surgery and what to expect next

Part 5 of my updates from my GoFund Me, combining two updates in one:

As I can be wordy (who, ME?), I will focus *this* update on the rest of the hospital stay and surgery. I'll write a separate post about the week after discharge and my follow up with Dr. B. 

I left off with the immediate moments after surgery-the drunken haze of semi-consciousness as I slowly came out of general anesthesia. My body, convulsing its offense at the presence of its old surgical nemesis, so angrily and frequently expelled stomach contents that I burned my esophagus. The nurses were on to this certain result (took me a while to connect the dots), starting me on Pepcid as soon as I could swallow anything. I'm still dealing with nasty heartburn from time to time--woke me up for a good hour of OW last night, in fact. 

I was originally scheduled to go to ICU, but, as often happens, there was no room ready for me. Instead, I wound up staying the night in the OR recovery room. Brian, who hadn't seen me in nearly 7 hours, was finally allowed to come in and visit just shy of 11pm. I do the feeling of immediate relief when he showed up. There was my Safe Place. While I seemed completely out of it--I wasn't particularly responsive--I knew he was there and I won't forget the consolation just knowing he was near me. He told me Dr. B told him my brain tonsils were thicker than imaging showed, but otherwise, everything was as expected and the procedure held no surprises. 

Now, normally for a primary caregiver like Brian, there are no limits to visitation, but OR recovery is a different story. I was being constantly monitored and hovered over by at least one, if not two, nurses, and in *this* particular wing Bri's presence was welcomed by me, but in the way for them. They gently made it clear to him he needed to come back tomorrow when I was in a regular room. I was still so out of it--only waking up slightly to retch--that in hindsight, his leaving was not stressful on me. 

However, Bri recently told me I broke his heart when he had to leave that night (as he was being gently shooed out the door). He told me he had to go and would be back as soon as visiting hours allowed the next morning, and I just whimpered a very pathetic, "Nooooooo..." "I'm sorry, honey, but I'll be right back as soon as I can." "Nooooo..." Awww, poor Bri. As I said above, in hindsight, it was all such a blur of time to me it didn't matter, but I do recall in the moment wanting my Safe Place with me, but poor Bri did, indeed, have to go. It'd been a very long day for him as well, after all. 

When he showed up as soon as allowed the next morning, I was still in recovery, but eventually a regular room was made available and I was wheeled into the unit for brain injury and stroke. I suppose brain surgery counts, too. 

I stayed a total of 5 days, 4 nights in the hospital. Each day was a drastic change over the day before. First 24 hours in my regular room, no way no how nuh UH could I imagine being able to leave the hospital. But, as promised, PT Amy showed up that first morning saying the goal today was to get me sitting up, on my feet, and walking three steps to a chair. I looked at her like she'd completely lost her mind. (As opposed to, well, me.) But, I did. Still woozy, still lightheaded, still disoriented, they made sure I was well pickled in medication before trying this challenge. I was proud to sit in that chair for 40min--then oh so eagerly hobbled back into the hospital bed. Day 2, I walked the hall and sat in the chair for an hour. Day 3, I walked around the entire unit, went up and down 4 stairs, and sat in the chair for 2 different 45+min periods. Day 4, I went for multiple walks and was finally cleared for discharge. 

Regarding pain: The crown and back of my head was and is actually mostly numb--turns out some nerves were severed in the process. Dr. B explained those types of nerves will grow back in 6-12mos "like a lizard's tail." So, the good news that brings is I have very little incision pain. What DOES hurt are the muscles and ligaments severed during the surgical process. Still today, even the lightest touch makes my muscles whimper. Neck, shoulders, center of my back, jaw...CRAZY sore to the touch. 

However, I have a high pain threshold. That isn't a brag; as much as I like to think I'm tough, I think it's more a matter of how I've been forced to adapt. But, what this meant was the nurses were practically scolding me for not using my pain pump enough. Then pain management people would come in and look at me down their noses: "You are hardly using your pain pump!" Me, mentally: Oh yeah, that thing! :::pushes button::: Needless to say, weaning me off of it was not an issue. 

Day 5, I was discharged and ready to go back to the hotel and complete my recovery. No way no how could I imagine flying cross-country--yet.

Now, on to what I've been really eager to get to and I'm sure you're most eager to hear: the immediate, noticeable effects of the brain surgery. 

Within hours of being back in the hotel room, I noticed something: my hand tremors were gone. Not reduced, GONE. For about the last 2 years, I noticed my hands would shake, particularly after movement. Walking around, hold out hands, tremor. Initially, they came and went. I then chalked it up to being too stressed in the rush of getting ready in the morning. Then, the tremors just decided to stick around. Starting in February 2014, the tremor in the left hand was consistently worse and longer. August 2014, during a tandem walk (heel-to-toe; you see it used in DUI tests) portion of a neurological exam, my hands started severely shaking because, as my neurologist explained, I was concentrating. WTF? 

I called these tremors my stupid parlor trick--it was the one thing I could do, every time, to show people a symptom when they asked how my condition affected me. Some days they were awful, shooting up my arms and even into my voice, but most of the time they were just there, annoying me. 

But when I woke up from surgery, they were gone. GONE. 

I still test myself, holding up my arms in the way that always triggered the tremors, and nothing. Gone. This was the first thing that made me cry, and still does. 

Also immediately gone was the sleep apnea I'd just been diagnosed with in September 2014. Heck, I've only had the CPAP 2mos. Brian repeatedly expressed stunned surprise over this one. Yes, I still lightly snore (have ever since my babies), but the deep choking sounds and gasping for air? Gone. 

(Gonna be interesting explaining that to the doctor prescribing the machine and to my insurance, who monitors my use of it.) 

I previously described how the headaches have changed, and it is still hard to get a good solid grasp of how much they have changed. My head hurts. A lot of it is occasional sharp twinges, likely from peeved nerves who'd been cut/jostled/harassed during the procedure. My eyes ache if I lie flat for long, but well, that's adding pressure to a the swollen incision area, so that's understandable. I feel tension at the back of my head, but that's most likely from swelling and things being pulled back as I was stitched. But the whole-head, vice-grip, ruin the rest of my day (if not the next few days) pain? Not a sign of it. Not a single hint. Gone? Merciful heavens, I hope. 

I'm eager in the months ahead to see if my other neurological abnormalities change. Dr. B told me he could only guarantee relief from the headaches; everything else was icing on the cake. Already that includes my tremors and apnea, but I'm curious about these: 

* Positive Rhomberg. If I stand with my eyes closed feet together, I cannot balance myself and start to fall. Resultingly, walking through a dark hallway can be a bit like being a pin ball machine--I've had to keep my hand on the wall as I go. 

* Positive Hoffman's reflex/Hyperreflexia. Flicking a finger a certain way causes my thumb to vibrate, a sign of hyperactive reflexes. I have it in both hands, but the hyperreflexia is more severe and generalized on my right side. In the exam just before I flew out here, it was very apparent--tap the left knee, twitch. Tap the right knee, get out of the way. 

* Loss of temperature sensation. About a year ago, we noted this in my lower right leg--freaked me out a bit, actually. Touch me with an ice cube or very hot water, and I know you're touching me, but can't tell the temperature. This is a big red flag to docs because it indicates a spinal cord (or higher) issue--local nerves do not control temperature sensitivity. Incidentally, Bri did test this a few days after my surgery, and not only did I feel the cold ice cube--the cold feeling lingered for a while after. That is a very good sign. :) As this is one symptom that tended to come and go, be better and be worse some days, I'm eager to see if it's come and GONE. 

But the main remaining symptom I'm most hopeful is included in that icing on my headache-gone cake is muscle spasticity. I want to be able to exercise again, however mildly, but I can't with my thighs seizing up after a couple stairs, or my calves seizing up two minutes into a walk, or my forearms seizing up just currycombing my horse. But MAN I really want to be able to move again. 

Now! Well, what now? I saw Dr. Bolognese for a post-surgical six days later and learned the following: 

* It will take a year to see exactly how much benefit I gained from this surgery, but he said I will see 90% of the changes by 6mos. 

* The tremors present-then-absent are attributed to how my cerebellar tonsils were wrapped around the portion of my brain stem that control the arms. He did stress this is a very difficult location to reach; a centimeter here or there, and he could have easily killed me. I get the impression there are few docs that would have been willing to take on that challenge and succeed with the level of art and skill he displayed. 

* He also was not surprised the apnea was gone, and was hopeful for me that my severe fatigue will alleviate as I can get some naturally restful sleep for the first time in over a year. 

* Dr. B closed my incision himself (good, since the plastic surgeon he sometimes uses in more complicated cases charged a fellow patient six figures!); everything is dissolvable except my top and bottom stitch, which my PCP can remove. 

* I can shower/get the incision wet after 2 weeks (ugh); complete immersion, like swimming, will be a good month or so. 

* No lifting, reaching up, pushing anything more than 5lbs. That means grocery shopping carts (!!), getting things down from shelves, gallons of milk...aw crap, just realized it's grooming anything above Trilogy's shoulder too. 

* I will start on PT immediately when I get home. Focus, like with my back surgeries, is core strengthening and range of motion. 

Now...the big question is one he cannot answer, and I know it. Since I probably have a connective tissue disorder--I really should get genetic testing to confirm this--is there a risk of repeat surgeries and (what I dread) cervical fusion? There is no knowing. All we can do is monitor my cranio-cervical junction and watch for any sign of instability. 

Here's the bummer. Chiari is incurable. Treatable, but incurable. This surgery has already provided massive relief and more than I'd hoped for, but I do need to stress it almost certainly won't erase all of my long list of symptoms. Nerves are too freakin' sensitive, and once damage occurs, it can rapidly become permanent. Not always, but often. Heck, I have permanent nerve damage from the massive herniations that led to my back surgeries, and I'm very fine with them because it's more than a fair trade to what I was living with before. Painless but annoying muscle twitches along the outside of my left leg? SURE, I'll take that over being completely immobilized. 

So, in the next year, we will learn what and how much remains damaged, and what bounces back. And I can say right now, if it's just the headaches, tremors, and apnea that are gone, that is MORE than a fair trade for everything else sticking around. I do get the funky feeling of ants-crawling up and down my head and arms still, but seriously...FINE. No pain, no interference with function, just weird. The brain fog, cognitive errors, and sensory overload are maddening and annoying, but intermittent...FINE. 

I can live with all those and their similar minor symptom companions. I can live being different, but functional. 

I can LIVE.

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