Hey, @lilwider (and forum friends)! I should be asking you the same. How are you feeling???
Like everyone else before us, I am taking recovery one day at a time. I was just really glad to get the hell outta the hospital. When an aide walked into my room carrying a post-op plate of pork, that was bad enough, but I had no idea how much worse things were going to get later that night and the following morning.
The plate of eggs and toast delivered the following morning didn’t even make it 5 steps into the room before I shooed the same aide out of the door. I got the discharge green light at 9:17 AM and was promptly on my way home at 9:50.
All in all, my diet in hospital consisted of 4 lemon ice cups, intravenous hydration and Dilaudid as well as a cup of water. I didn’t get the lemon ice until the shift changed after 10 PM, when a more attentive nurse and nursing assistant duo came on duty. Even so, I didn’t get much sleep, if I got any at all, due to the noise. One doctor who was on the unit was such a loud-talker that, without any prompt, the nurse came into my room at about 1:30 AM, pulled up YouTube on a monitor, and found a 10-hour video of white noise without ads. She kindly cranked the volume, but that still did little to drown out the talking and constant noise of alarms/alerts going off at the nurses’ station all night.
Moral of the Story: Take ear plugs, noise canceling headphones, Ensure, and Naked Juice to the hospital!
The first day home wasn’t too too terrible as far as pain and swelling. I chose not to take the liquid oxy that Dr. Coniglio prescribed and instead alternated crushed Tylenol and Advil every 3 hours. The meds were mixed with either cottage cheese or yogurt, because I needed some protein in my system. That and because apple sauce does nothing to kill the bitter taste of crushed pills.
It was the following morning that I was pretty certain I was going to die from asphyxiation due to inflammation, choking on my own saliva, cardiac arrest, panic-induced misadventure, or some combination of the 4. I contemplated calling Dr. Coniglio or 911. My fear was being taken back to the same hospital that tried to kill me with pork or being taken to the hospital just down the road where the outcome likely wouldn’t have been much better. Maybe a shot of epinephrine from a helpful fireman was all I needed, but did I want the spectacle still being relatively new to the neighborhood? Dilemmas, dilemmas.
I made a call to Dr. Coniglio’s office, and thankfully he was in seeing patients that day. He took the call and said I didn’t sound good. I was struggling to get air in through my mouth (I’m not a mouth-breather, just how I was gauging the rate of swelling) and also trying to make sure Plan B - breathing through my nose - was still viable. The inflammation was also shutting down my left nostril. On top of that, the constant clearing of my throat and coughing (aspirating?) along with hacking up phantom phlegm (from being intubated?) had shredded my throat. My soft palate was so swollen, I couldn’t even see the back of my throat, let alone beyond my molars.
Dr. Coniglio said he’d literally been poking my esophagus, feeling out the situation with my c1, and apparently did some northern exploring for Yeti while he was in there, so he’d call in a prescription for a steroid to calm the raging inflammation. Unfortunately, I think he must’ve forgotten, seeing patient after patient that morning, because it took 2 hours from the time I spoke to him for the pharmacist to receive the script and hand it off to my irate 83-year-old mother, who’d been sitting in Walgreen’s for an hour waiting. At 83, you don’t have a lot of time to waste, especially if your kid is sick, even if that kid is 57. Granny on fire! Mercifully, it didn’t take long after the first dose of Prednisone to notice some relief.
Moral of the Story: Do NOT leave the hospital without a prescription for Prednisone!!!
Now that the inflammation is under control, I am more cognizant of the fact that I have no feeling in the left side of my lower lip all the way down to the incision that runs from just below my left jaw/earlobe to my frenulum and sits back about 2 or so inches from my chin.
Aside from being numb, there is some paralysis of my tongue that went unnoticed until I stuck it out while looking in the mirror and saw that it pulls left and sits higher in the back of my throat than the right side does. While I can now swallow, it is still a tricky proposition regardless of whether I am eating or drinking. Small bites of soft food need to be carefully chewed and helped down into my esophagus with liquid, otherwise the food, no matter how soft (and even well-chewed), will sit at the back of my throat, until I either wash it down or cough it out, and then try to swallow it again.
And then once that is accomplished - meaning once I’ve managed to eat without choking myself unconscious - there is the clearing of my throat, the coughing, and hacking up of phlegm. Even though the phlegm is clear, I do intend to check in with my primary provider to inquire about a chest x-ray. I do not need a case of aspiration pneumonia on top of everything else.
I’m guessing the phlegm is coming from a bit of aspirating due to the issues with swallowing and likely because, as Dr. Coniglio indicated, he was pushing my esophagus around. I’m sure being intubated didn’t help matters and just added to the irritation. As much as I have the urge to take some cough medicine, I’m not sure that’s the best idea given the circumstances, so I’ll wait to speak with my primary tomorrow.
Apologies that this is so long, but I’m trying to get it all out while I can think of it, in case it’s useful to someone else at some point.
The last couple of things I’ll touch on are what’s changed since the surgery, my new diagnoses, and what I learned about an old diagnosis or lack thereof just shortly before being wheeled into surgery. First, the constant ear and jaw pain are gone. Bravo! Unfortunately, the pain behind and just above my left eye remains. That is possibly an indication that fibromuscular dysplasia (FMD) rather than VES is the culprit. So, removal of the styloid and decompression of my jugular vein resolved some of the symptoms. However, unlike VES, there is no treatment for the FMD discovered in my carotid and vertebral arteries. It is what it is, for now.
I was hoping that, once I’d been de-boned and flipped Eagle syndrome the bird, I’d be done with medical mysteries and chronic illness. The worst of it is over - knock on wood - but now I’ve got to get on top of FMD and learn if it’s hiding elsewhere in my body. Because FMD is a rare connective tissue disorder in the presence of a couple of other long-standing diagnoses that point to Ehlers-Danlos syndrome, I’m obligated to head back to genetic counseling. It seems VES surgery wasn’t the silver bullet, but rather the first domino in position to topple the rest.
And last words for the evening, before being rolled into surgery, I had a lovely conversation with a delightful anesthesiologist, Dr. Rosenfeld, a wise and well-trusted older owl like Dr. Coniglio. He’d reviewed my medical history and complications with anesthesia. Actually, it was one complication that has not since been duplicated. We talked for a surprising good while. He actually pulled up a chair, sat down beside my hospital bed, and crossed his legs comfortably during what felt like a very casual and friendly chat with an old friend.
After listening intently to my ordeal living with a brain injury that no physician has ever fully acknowledged (except my neuro-optometrist) or given even a provisional diagnosis, Dr. Rosenfeld very gently but firmly told me I’d suffered a stroke, mild, and yet still, a stroke. I think it shocked him just as much to hear that not one specialist had ever mentioned it as it did for me to hear it for the first time.
The brain injury happened in 2011, and just like with VES, it took a random moment by a caring physician to do what scores of others had failed to. I have learned so many things throughout this long journey, things I had not expected to learn, and likely never would have if not for VES. But mainly, I’m reminded of the quote from The Sound of Music, “When the Lord closes a door, somewhere He opens a window.” I would have never guessed VES would be that window.
Moral of the Story: Don’t lose hope. “For everything there is a season, and a time for every purpose under heaven.”
Peace and Wellness,
CoHDa
. Your way of doing things makes much more sense, of course, as it allowed you to arrive home to order rather than semi-order or chaos & that is a giant step toward getting a jump on recovery.
I was dog sitting my in-law’s papillon when I had my first surgery. He’d been trained as a therapy dog when he was younger & he curled up on my lap as soon as I got home from the surgery center & became a permanent fixture there as long as I was on our recliner. His presence was quite soothing.