Recovery: Home

The recovery at home was basically three things:

  1. Sleeping/ Not sleeping but wanting to sleep
  2. Temporary craziness
  3. Side effects and skin infections

Sleep/Not Sleeping: I don’t know if this is common, but I had a hard time with sleeping. I also had times when all I did was sleep for hours and hours. Then, there would be times when no matter what I did, I couldn’t sleep for more than two hours at a time. I think this was in part due to pain, but it was also due to the pain medication. The narcotics prescribed made me feel both fatigued and keyed up, which is a bizarre combination. I finally found a way to get some rest in a reasonable format after I was able to mostly stop the pain meds. I was helped by something as simple as the Sleep With Me podcast and when none of the “tips” for sleeping (no phone, no TV, cold and dark room, etc…) stopped working, I moved to Lunestra  after I had been awake for most of seven days.

Being crazy: First of all, let me say that if you are preparing for this yourself or reading about this for a loved one, I want you to realize that you need to open your heart to forgiveness. Then, imagine all of this: you have had a major operation in which part of your skull was cut out, put on a table while some tools went inside your ACTUAL BRAIN (under the gray part, but still) to put a fancy paperclip on a vessel that has already broken open once, and then you were put all back together again. Then, to stop bad things from happening after this procedure, you have to take a combo of medicines that all by themselves, without the brain surgery part, would make life harder.

So, the medications are bad. One of them, called Keppra, was particularly awful. I read a comment that said taking it is like becoming the Incredible Hulk, and that is the most apt description I have ever heard, though I might have gone with Mr Hyde instead. It was AWFUL, and I was a nightmare to be around from that all by itself.

But, it wasn’t just the Keppra and other meds, there was also head pain. Every noise hurt. My mom scrambling eggs for me was an exquisite kind of torture.  Leaf blowers were demons sent directly from hell. In general, light and noise were bad and worse in terms of their direct effect and the combo, well, let’s just say I’m glad I can’t remember all of that time in my life.

Side effects and skin infections: There were many side effects, for the lack of a better term, from having brain surgery. A big one was my vision was pretty bad for a while. It was better than after the first surgery since I felt pretty confident that it would get better. I also had a particularly hard time with balance and drops in blood pressure upon standing for a while afterwards. Then, I had a skin infection at the surgical site and had to go through all the wound care for that.

Things improved gradually, and I would like to say that I’m completely back to normal now, but that’s not quite true. I’ll write another post about the longer-term recovery since most of this immediate recovery was all over by week 8 past the surgery. The good news is, though, that the immediate surgical recovery was not as bad as after the aneurysm and I’m continuing to improve even now. I’ve had my brain checked quite a few times, and everything is as it should be.

 

 

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Recovery: Hospital

The recovery process since the clipping has been long, and it’s still not over yet.  I’m having a hard time not making a corny joke, like “My recovery has been like a roller coaster, full of ups and downs and vomit” or “if you’re hoping that getting a paperclip in your brain will help things get organized in there, you should consider getting an Easy button from Staples instead.”  Those are pretty lame, so I’ll won’t quit my day job.

Since the process has been a long one, I’ll address the different phases I’ve gone through. This post is about the immediate recovery that occurred in the hospital. Here’s a general timeline:

2 days in the Neuro-ICU. I stayed there two nights, but would have moved to the regular neuro floor on the second day if I hadn’t been having some issues with the drain (more on that in a bit)

3 days on the regular Neuro floor

So, the total hospital time was 5 days.  I went in for the surgery on a Monday (early, early on a Monday) and then I came home on Friday, late in the evening.

I don’t actually remember much of the stay in the ICU. I have a vague memory of a PA telling me that I’d get to leave in the morning the day after the surgery, which seemed surprising because I still couldn’t really sit up easily, then the neurosurgeon saying I needed to stay one more day because of the drain. The drain, you see, was still filling up with blood and CSF, so I couldn’t leave the ICU till that stopped enough for them to take the drain out.

Drain? Like a sink drain? Not quite, but the same general idea. After the surgery, they install a little plastic tube in the surgical site, and that tube is attached to a little plastic bubble so that excess brain fluid and blood can drain from the surgical site and not allow for much brain swelling. As a horror fan, I was totally stoked to have a BUBBLE OF BLOOD attached to myself for a few days. I even took a pic. Please remember that I was also on some pretty heavy duty narcotics, so everything was a bit more removed/distant than in normal life, which may also explain why I thought a bubble of blood was pretty neat instead of gross.  I’ll include photos below, but you don’t have to look if you’re squeamish.

So, after the drain issue was cleared up, I was able to move to a regular room and put on my own pajamas and take a shower, and life was amazing (in comparison). I’m telling you — if nothing else, this aneurysm has made me realize that taking a shower and cleanliness in general is one of the best modern conveniences ever. Sometimes, I hear folks talking about “how things used to be better in the olden days” and I just do NOT understand that. Why in the world would you want to go back to heating up bath water by the BUCKET??

Back to recovering — I wish that I could say that the recovery was no big deal, and it was all fine, and I had no pain. But that’s not true. I will say that the recovery from the surgery was WAY less awful than the recovery after the aneurysm. Here are some pluses/minuses:

  • Plus: I only took the heavy duty pain meds for about a day and a half, then was able to move to the pill form of pain meds relatively quickly.
  • Minus: My whole face hurt. My lips hurt. My head hurt. My teeth hurt. My eyes hurt. My neck hurt. The side of my face hurt. The back of my head hurt.
  • Plus: I don’t remember the pain the same way I do the aneurysm pain. I know I had it, but the combo of drugs and the surgery itself has thankfully removed a good bit of that memory
  • Minus: The staples. I had about 50 staples in my head for a scar that is about 10 inches long. Since I also have relatively bad psoriasis and had been off my medication for a month prior, my scalp was a scaly, blood, itchy, painful mess. A mess that I couldn’t scratch or clean for days.

There is no plus to bloody, itchy staples, so I’m done with that list.

I’ll get to the recovery at home and all that has continued in the next posting. I can say that in general, the clipping recovery wasn’t the worst thing that has ever happened. If you’re reading this, you have an aneurysm that HASN’T ruptured, and you’re considering the surgery, my suggestion is to get it done if the surgeon thinks you need it. The ruptured aneurysm was seriously one of the most awful things. This clipping surgery was not fun, but 2 months after, you’ll feel almost like yourself again and you won’t have to worry about things as much.

 

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BUBBLE OF BLOOD!

 

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From left to bottom right: Last day in ICU,  first day at home, day before staple removal, day staples were removed

Surgery

The past two months since the surgery has not exactly flown by. In fact, I think Oct/Nov 2016 may be two of the worst months in my personal history. I’ll explain why in a later post, but for now… the surgery

Before the surgery:

The week before the surgery, I was taken off almost all of my medications, except high blood pressure medicine and aspirin (ASA). Now, most folks would have been off the ASA, too, but because of my unique situation, the neurosurgeon kept me on the ASA for a few extra days, really to ensure that I would be less likely to have any clotting around the stent.

The day before the surgery I had to take a shower, washing with Hibiclens, then repeat the morning of the surgery. I left for the hospital thinking that I must be the cleanest person in the city, just to find out that I had to wipe my entire body down with more cleansing maps. There was even a map and instructions on how to most effectively apply the disinfectant.

Before the surgery, I had the usual — IV started, vitals checked, history updated. I met with the surgeon, confirmed I was competent and aware prior to surgery. Then, I was wheeled off to the OR (by the anesthesiologist, which I’m not sure is protocol, but was actually nice. In past surgeries, I’ve entrusted my life to a guy who pops into the room for 2 minutes, then asks me a question I don’t remember answering.

NOTE to HOLLYWOOD: Anesthesiologists don’t actually ask folks to count backwards. In my experience, which is more than I’d like it to be, they ask something like “What’s your favorite book?” after finding out you’re a reader, or they say something about concentrating on breathing in oxygen, then BLAM, you wake up in a different room, with something beeping behind your head, thirsty, with a nurse checking in on you.

As to the surgery itself, I don’t remember anything about it. Thank goodness. I was scheduled for 4 hours, but it took closer to 6. The vessel (the one that was held together by the coiling) was pretty fragile, so it’s a good thing that I had it fixed with the clipping. I don’t think there were any unexpected events — just a tricky placement and a careful neurosurgeon.

I’ve posted before about the process for the surgery, and I’ll get to the recovery in the next posting.

 

Worries/Concerns/Etc…

I have my post-angiogram/pre-surgery appointment with my neurosurgeon today. I’m going to write this post in two sittings. This first will be before the appointment. The second after.

So, I have read enough to know online that this procedure (aneurysm clipping) should actually be somewhat okay. As brain surgeries go, this one is less risky than others (like removing a tumor or something). That doesn’t mean it’s without risk, though, and those risks are pretty bad.  Here’s a list of things that could go wrong in no particular order:

  • Ischemic stroke (bad, especially for someone with an aneurysm)
  • Seizures
  • Hydrocephaly
  • Increase in headaches
  • Problems with vision, balance, memory, language…
  • Infection at the wound site

and… of course… death.

(I once had a very Southern, from Virginia, professor, Southern Lit professor of course, who asked in class what “mort” meant. I hesitantly piped up “death,” and he said exasperatedly, “Yes, death” while sighing at the lack of knowledge, fortitude, or interest from the students in the class. So…)

Yes, death.  In fact, the neurosurgeon recently had a similarly aged woman with a similar situation who had to have a clipping. She made it through surgery, then the next day had a stroke and died. There’s a reason I’ll be in the ICU, I suppose, but the ICU is not a magic amulet that will protect me from dying.

Pondering on this has made me realize that there are many things that make me not want to die, like family, friends, and my dogs. Those are really important. But, there are a few other things that I also would like to live for, including:

  • The Dark Tower movie idris-elba-the-dark-tower-movie-set-costumes-tom-lorenzo-site-3
  • The rest of the Southern Reach series — I’ve only read Book One
  • The new season of Sherlock
  • The latest Daniel Radcliffe films — I’ve heard both are good but haven’t seen either (Imperium and Swiss Army Man)
  • Learning how to crochet beanie hats
  • The final two seasons of Game of Thrones, which will likely be depressing, but I still want to be watching
  • Finding out who Negan killed. That bastard
  • The movie version of Miss Peregrine’s Home for Peculiar Children

Obviously this list is not all-inclusive. For instance, it does not include all the things that I could actually do right now,  but probably won’t because waiting on brain surgery is annoying and such.

AFTER THE APPOINTMENT:

So, I went in thinking that the surgery would be happening in a week. Instead, it will be happening in 4-5 weeks. Why? Allow me to explain:

Right now, I have a not-doing-anything stent in an artery in my brain. That stent is not really a problem, as long as blood keeps flowing. However, if my body were to recognize that stent as a foreign body and try to get rid of it (by clotting), then I’d have a stroke.

This isn’t particularly likely, but it’s not unlikely. (5% from what I can tell from a bit of research online). The neurosurgeon wants to wait a bit longer (7 months instead of the recommended 6) to provide a little extra healing time and cushion to decrease that risk as much as possible.

qkxke7lSo… I am back to  waiting for the surgery. In the meantime, I’ve already gone mostly off caffeine, so it doesn’t make sense to start drinking it again given that I’ll just have to stop again soon, so I won’t even have coffee to keep me awake in the meantime. Nothing wrong with napping, I suppose.

After the Angiogram

On Friday of last week, I had the cerebral angiogram. This time was much quicker — the surgeon took fewer images since he knew exactly what area he needed to see.

The good news is that the stent area has healed with no weird formations. The aneurysm still hasn’t grown or changed shape, which is not exactly good news, but it is what we expected.

After the angiogram, I had a headache and felt fatigued for days. I’m still a bit more tired than usual today (Tuesday, four days after the procedure).

Next up is the clipping surgery. There are some great videos online about this, including this a patient account. Her aneurysm was unruptured: https://www.youtube.com/watch?v=QRtQeqVuXFs There are many, many videos of the actual surgery on YouTube, but only watch those if you have a strong stomach.

pe-aneurclipping_figure1So, what is a clipping if you don’t feel like watching a video? Well, it’s simply clipping off the ruptured place in my brain so that the blood can’t get there and that area can’t rupture again. For me, the clipping will be in between the stent and the coiling, so it’s a bit more complicated, but the idea is the same.  The surgeon (or someone else, I suppose) will cut open my head, including a part of my skull, then move the gray matter a bit until he gets to the offending blood vessel. Then, he’ll place a small device, called a clip, on the aneurysm. He’ll then put contrast in my brain to ensure that the blood isn’t going back into the aneurysm. After that, he’ll close me back up, including putting the part of my skull that had been cut out back in, and sew me back together.

I’ll spend about a week in the Neuro ICU, then be back at home recovering for about two months, and end up with a really gnarly scar. The recovery is supposed to be pretty rough — I can expect more headaches, fatigues, and some balance problems. After my brain explosion, I had a lot of trouble with words and memory, which may be a problem again since the aneurysm is in the communication center of my brain. I’m hopeful, though, since there’s no rupture that I won’t have that part again. I still, six months later, have a hard time remembering names of places, people, medicine, etc…. It’s like the rupture affected only proper nouns, but I suppose that’s still better than the alternative.

The surgery is scheduled for about two weeks from now, and I’m glad that it will be over sooner rather than later. I was really worried that I’d have to spend months waiting for this to happen, so it’s somewhat comforting to just moving towards getting the whole thing done.

 

The Next Step

Tomorrow, I go into the hospital for another cerebral angiogram. This is my fourth or fifth one of these. For the first two or three, I was knocked out and don’t remember anything. For this last one, I was awake, mostly, and remember the whole thing. The material provided and online says that these procedures are mostly painless. This is only somewhat true.

When the dye went into my head, I felt hot and flushed. I also felt a pounding pressure, like the beginning of an awful headache. As the dye exited, the headache/pressure pain felt went with it. Since there were about 20-4,000 images taken, with every image requiring contrast, you can imagine that saying this was “painless” is not quite true.  (I exaggerate, but there were quite a few doses of the contrast material).

After the CT angiogram, I’ll find out how the aneurysm is doing now that the stent has healed and then get scheduled for the clipping surgery. My next post will be about the clipping and what that means/will do.

What Had Happened Was

If you’re reading this, you may not know that my seeming lacking in grammar title is actually a Southern colloquialism, which translates (mostly) to: I’m about to tell you more about the situation. Typically, this is said after someone has made an announcement without preamble, as in the following scenario:

See, boyfriend, I kissed another boy. But before you get angry, what had happened was…

And then the full explanation is given. I know in this case, I’ve already provided a preamble, but I do think it might be a good idea to give some not fun-medical description of my brain explosion, so you’ll know what happened. See, when my brain exploded, what had happened was this:

In the left anterior communication center of my brain, a tiny artery (that branches off from a parent artery) ruptured, resulting in a subarachnoid hemorrhage (medical abbreviation: SAH). The resulting aneurysm is shaped like a boot or a Christmas stocking. Blood spilled in my brain and went into two tiny little rivulets on both sides of my brain (and to any motherfucker who says that brains can’t feel, I say a resounding FUCK YOU. That shit HURT, and I felt it in my brain.. and eyes and head and ears and body and every fucking place).

pe-aneurcoiling_figure3b

After the rupture, doctors went into my head with a catheter (threaded into my brain using access from my groin. Can you believe that? They went all the way to my brain from a tiny incision halfway down my body? Medicine is fucking cool). The catheter contained tiny platinum coils, think of a Slinky, that they released into the aneurysm. This was meant to stop the bleeding and repair the aneurysm. In the picture here, you see a tiny balloon with a tiny neck. That’s the ideal situation for a coiling of an aneurysm. My situation is far from ideal. Remember what I told you mine looks like? Yes…a boot or a Christmas sock. I have a wide-neck, ruptured aneurysm, so the coiling basically only stitched up the bottom of the boot/sock.

So, after the coiling, I spent two weeks in the hospital worried about vasospasm. This sounds like a Doctor Who monster, but it’s actually when arteries/veins close off in response to stress. They do this in some misguided attempt to shut off blood flow to stop a problem, but this can actually be deadly. See, the first part of the problem is TOO much blood (hemorrhagic), but the vasospasm causes the opposite problem of TOO little blood, which is called ischemic. I had some mild vasospasms for about the first week, which they measured by listening to blood flow in my brain with a sonogram (again, medicine is fucking cool).

After a couple of weeks, they repeated the CT and found out that the blood had stopped flowing into my brain, but that the boot was still filling with blood. Why does that matter? Well, just imagine a water balloon. It can only stretch and fill for so long, then POP. The POP would be another aneurysm, which I likely wouldn’t survive because there wouldn’t be a lot of options for stopping the blood flow without causing an ischemic stroke.

pe-aneurcoiling_figure6So, two weeks after the initial event, they placed a stent, which is supposed to work like this picture. See the coils go up the the stent and the whole aneurysm is protected and blood flows the way it’s supposed to.

But in my case, that’s not happening. The stent isn’t working. There are coils at the bottom, in the foot part of the sock, and a stent on top, but in the ankle part, there’s nothing. Back to the water balloon image, but this time, picture a snowman. The coils are in the head of the snowman, the parent artery is the ground the snowman sits on, and the body of the snowman is unprotected and filling with blood still.

So, I have to spend three months with a less than 1% chance (you’re telling me there’s a  chance, yeah)  of another rupture, while I wait on the stent location to heal, so that I can have a craniotomy and another surgery — this time I’ll be having a clipping. But, that’s a story for another post.

 

 

 

Day One: Pain, Pain, and More Pain.

Since the aneurysm, much of my life seems to be divided into before and after. I look at photos and think, “I went to that place before my aneurysm.” I see myself in a picture online, and am pleased that I exist… after my aneurysm. I can’t possibly recount each day after my aneurysm, but I can recall some of that first day.

The first day after the aneurysm, I went to surgery at about 6 AM. This was about 17 hours after the artery ruptured (exploded) in my head. I don’t remember a single thing about the surgery. I don’t remember meeting the surgeon before the surgery, or much about the time I spent in the ED prior to moving to a room. My last memory before surgery is of a tech helping me get clean. Since I’d just spent about 12 hours vomiting all over myself (including in my hair), that bath will forever go down as one of the best moments of my life.

I remember waking up after the surgery, in the room where I’d stay for about a day before I was transferred to the room in the Neuro ICU where I’d stay for almost two weeks. I suppose I went to the PACU after surgery, but I don’t remember that all. I remember the room was dark, but the light behind the blinds seemed like the sun was shining directly in the room. I remember a few folks came to visit me, but I’m not sure if I dreamed some of them. I remember pain, lots of pain, and a nice nurse who kept trying to find a way to relieve my nausea so I could drink cool water without vomiting.

I remember my husband coming in the room, and I remember telling him I was sorry that I’d yelled I was dying before I was put in the ambulance. I remember my mom and aunt holding my hand, and me feeling comforted, but also that the movement of them touching my hand made my head hurt more because everything, and I mean everything hurt. My husband said that for about a week after the aneurysm and the surgery, any movement or noise or light sent me into shockwaves of pain, and that I clung onto the bed, like I was riding a pain wave, that it was awful to see.

Other than that, everything from that first day is pain, just pain layered over nursing care and family care and worry about my job and my house. I could think sometimes, and I’d remember that I was supposed to be DOING things, HELPING, not being helped, but then the pain would come back and all I would think about was that.

The Event

I just re-read The Dark Tower series, and there’s a line in one of the books (Wizard and Glass, I’m pretty sure): true love is boring. In some ways, so are medical emergencies. Something that causes so much stress, drama, and excitement in the moment is so much less exciting in retrospect and in written form.

So, here’s the context for the event. My husband and I have relocated to Portland — I flew from Oregon to South Carolina two days before my brain explosion, as I like to call my aneurysm, since really, something in my brain actually did explode open, which if you’re going to have something awful happen, at least it could be as cool sounding as an explosion in your brain. Anyway, I flew home two days before the event so that I could pack up our belongings from our recently sold home and get ready for the movers to come and load the truck up with all of our stuff that would be moved across the country. The morning of the event, my mom and I spent our time packing up as much as possible in boxes.

12496327_1265261900168133_4379015052550700317_oIn fact, this (see photo to the left) is probably the last snapchat I sent prior to my brain explosion. I sent this to my husband and then sent my mom out to get more boxes. After she left, our realtor came over with coffee and cookies, and we sat on the front porch. As we were talking, I heard a loud pop in my head, then the world tilted to the left. I started hearing a “wohm, wohm, wohm” sound. I knew immediately that something was wrong, but I didn’t know exactly how wrong.

I called my husband, who is a a nurse with years of experience in emergency and critical care. When I told him, (kind of… since I also started to lose words), he told me to get to the emergency room immediately. I stood up and tried to walk to ask our realtor for a ride, but I couldn’t walk by then — I was trying to walk forward but kept moving towards the side. I made it to the couch inside and that was it. Then, the realtor called an ambulance, my mom came home, and my husband called back.

By this point, the pain was unreal. People say that your body forgets pain, but I haven’t forgotten that pain at all, even months later. It felt like my entire head was being squeezed by an anvil, and I kept worrying that the immense pressure I was feeling would cause my head to literally explode, instead of what I found out later was just a tiny artery in the communication center of my brain.

The ambulance came, medics helped me calm down and started their assessment. After saying the worst possible thing to my husband: “my head hurts so bad. I’m having an aneurysm, and I think I’m dying,” I gave my phone to my mom, was put in ambulance, and went to the local ED where a CT scan confirmed a brain bleed. I was given lots of pain meds and antiemetics, but the helicopter ride was still awful. I had extreme photophobia, and the pain was only dulled to a barely tolerable level. I remember forcing myself to open my extremely sensitive eyes, thinking that the helicopter ride might have been my last chance to see the sky. I remember wishing I’d said something nicer to Eric and my mom, since I might not have another chance.

I don’t remember landing or getting to the next ED room. All the rest of that day/night is a haze of pain and vomiting and nausea and wondering where my husband was (he had to fly from Portland to SC, all in a rush, while I was in the ED waiting for the neurosurgeon to review my case). I went to surgery first thing the next morning, and I don’t remember that either.

So, that’s my story. For such a life-changing event, it certainly doesn’t sound that exciting.

Preamble

Well, how to start a blog about an event that happened almost exactly three months ago, that was life-changing but somehow not?

Maybe with this: on February 17, 2016, I thought I was going to die. I remember being in a helicopter, fighting extreme photophobia (sensitivity to light) to open my eyes, wanting to see the sky as much as possible before I died. I re-played the last words I’d said to my husband before I was incommunicado (“I think I’m dying”) and regretted I hadn’t found something more kind, more profound, more sweet to say.

I didn’t die. In fact, other than some residual, persistent, and bothersome headaches and what seems to be chronic fatigue, I’m almost back to my old self. It’s strange, really, and this will perhaps help me (and you, if you’re reading along) find some peace with an unexpected and awful time in my life.