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AVM Recovery Notes

April 30th, 2007 by Joyce

Below, you see my transcribed AVM recovery notes. The post date is the last date at which this blog entry has been updated. I decided to transcribe the notes from my favorite Parapluie-Revel notebook so you and other AVM patients could watch my progress.

To better understand my recovery process, you should probably also review the posts labeled “AVM.” They are a more complete record of my process; in retrospect, my parapluie notebook was used more often when I felt poorly than when I felt well.

I kept the notebook so I can remember how it felt to recover from my AVM. In the shorter term, I wanted to be able to refer back to the notebook and follow my progress, some days and weeks so dramatic I felt like I could almost measure it. Other days and weeks I just felt awful, and wasn’t sure if I would get much better at all. The notebook reminded me that I would. And when I reviewed the notebook and realized that many of the problems I had noted immediately post-op had eventually faded and gone away, I would feel buoyed by my obvious improvement.

Since I couldn’t tell what wasn’t important and what was, I just wrote everything down. Maybe a lot of the sensations and experiences I recorded weren’t at all important, and maybe in retrospect sound downright silly. At the time I didn’t think they felt silly at all, and sometimes I worried about what I was feeling, and why. In keeping my notebook, I was also looking for trends that would help me understand better what was happening inside my head. You may notice that gradually I made fewer and fewer observations in my journal; that’s because I was feeling better! (Instead, I scribbled grocery notes and to-do lists.) Edits are included in brackets.

Monday, 30 April
– I thought I was so much better, but the past week has been a big step backward. Maybe it was the stress of the angio, the stress of repairing the house (and the paint color is NOT right!), spending time on the big monitor to scan photos for my mom (even though I took breaks), the stress of not sleeping well because I had an awful cold that settled in my head and now my chest. I don’t know, but I’m just not right. My speech is more choppy, my head hurts, and I can’t multitask babies-husband-house-food. My ears hurt all over again. I want to hide but with too much to do and no place to hide, anyway, I try to push through it. I would rather I didn’t have to, though, especially when I can’t really understand what it is that’s making me feel miserable. Am I just doing too much, too fast?

Friday, 30 March
– I drove to Target. By myself. I bought something. A few things, actually. A month ago I couldn’t bear to feel every bump on the road, and the riot of red and clashing colors actually made me nauseous (even at 8am on a Saturday).

Wednesday, 28 March
– persistent headache for two days. Through the ears. Trying to do too much?

Monday, 26 March
Notice things that I’m getting used to, but maybe could work on to continue to improve. For instance, being upside down makes me dizzy (well, worse than it used to). Very aware of the feeling of blood rushing to my head. Still sometimes hard processing speech like numbers (remember before the surgery I realized I couldn’t do math). People on the telephone sometimes still talk too fast. Ears headaches get bad and persistent. Driving is exhausting.

Saturday, 24 March
– Not like I was that good before, but it seems like I can’t multitask in the kitchen. Everything is a little, um, charred. And I wind up with a headache.
– Talking is I guess getting better, although sometimes I feel like I’m playing Taboo. I’m worse when I get comfortable and speed up. I wind up (verbally, figuratively) falling on my face.
– Isn’t there SOMETHING I can do to be more proactive and get better FASTER?
– When I was in the ER in January I realized I couldn’t sing. I just couldn’t sound right. I still don’t feel like I sound right . . . but maybe I never really did and I’m just more aware of it. In either case, Maria Callas I was not, and still not!

Tuesday, 20 March
– Allergist today.
– Nose feeling better, gradually. Allergist think not deviated. Books sure do hurt. No more board books with Carmen in bed.
– Took the freeway (just over to Bellaire) but exhausted all day long. Slept for 3 hours in the afternoon, still tired.

Sunday, 18 March
– tingling in fingers (mainly first) very very strong for > 1/2 hour; motor okay, just feeling. Related to AVM or something else? Would get similar (fainter) before. WHY? Annoying feeling.

Saturday, 17 March
– head tingling, neck, jaw all during afternoon, nap. Again at night before fell asleep. I wonder if part of this is because I am clenching more than usual?
– went to Ikea yesterday, first thing in the morning, just to return something and eat breakfast. Brain got totally toasted.

Friday, 9 March
– still have burn marks from 1st EEG. What IS that stuff? Burn marks from 2nd EEG still there, too (but not as obvious!).
– full day since 6am (now 10); morning mostly blogging; no nap; tired and head feels like a balloon, ears pressure and lobes on L tingle, but minor
– nose bridge still sore

Thursday, 8 March
– Isn’t it stupid that even though I don’t understand (auditory processing still sometimes slow?) I STILL say “uh-huh, uh-huh” ANYWAY?
– seem easily distractable, but still not sleeping without waking up, uncomfortable head, etc.
– full day since 6am (now 10p); morning mostly writing; no nap; tired and head feels like a balloon, ears pressure and ear lobes on L tingle, but minor! Doing good!

Monday, 5 March
– nose still hurts – surgery-related, or somebody hit me with a book?
– sinus pressure feeling, but not congested

Sunday, 4 Mar
– Visited Galleria (before open) – visual overstimulating, but not bad – audio okay
– road noise under Ru not great, but better (last week REALLY bothered
– feel all the bumps on the street [in my head]
– some print sizes/fonts difficult to read; science journals easier to read than novels/philosophy; small fonts easier than big fonts
– notice still some auditory processing problems on phone (need to repeat, repeat), especially with people I am not familiar with
– still sometimes slow on speaking (esp. at night)

Saturday, 3 Mar
– Banner day (lots things to do, stamina way up)

Weds, 28 Feb
– Still nose bridge hurts. Glasses tough to wear.

Sunday, 25 Feb
– head hurts, but ears hurt less with mental overexertion
– new headaches; sharp, throb, intermittent. side top of head, top of head
– “pulling down” feeling on mouth after nap and working on ‘puter

Saturday, 24 Feb
– #3 card buzzcut to match the length of my regrowing hair

Friday, 23 Feb
– new AVM friend at Dr. Chen’s office
– could AVM have burst in labor?!?

Thursday, 22 Feb
– tingling all over today, feet, legs, head. Slept ~8 hrs + 1.5 hrs nap
– Notice still go through a LOT of water

Wednesday, 21 Feb
– Can realize that I read New England Journal of Medicine pretty well!
– frontal headache. Darn.

Tuesday, 20 Feb
– Made dinner, now at 7:30 ear pressure, pain, mainly L side

Saturday, 17 Feb
– R side hands tingly, L feet tingly
– tingles R side down to R arm and leg, back
– pm – still tingling. 5p, tingling and traveling b/t ulnar and radial nerves, taking turns

Friday, 16 Feb
– tongue tingling all day (mostly tip/R side)
– ~ 6 hrs sleep Thurday night, ~1.5 hrs in afternoon. Carmen woke up 12, rocked until 2a, Matt rocked until 3a (and I waited), tried to sleep with Carmen so Matt took her and I tried to sleep with David. Lay with David at 4a. Ears hurt, then tingle numb traveled from ear to R arm then L arm then at the same time, diff time, back. Then tingled up my neck to jaw, then R mouth dropped. Tingling and subsided enough to go to sleep within 30 min.

Thursday, 15 Feb
– R thumb twitchy

Weds, 14 Feb
– Up late Tuesday, trying to use PDA but dizzy; Carmen sick at night with stuffy
– can’t finish tasks! Tried to put away clothes but ears hurt/felt pressure after a little while
– night – fell asleep late (Carmen again) then woke up 2am with nightmares and DIZZY. Alseep later, but still dizzy/ears. Better, then happens again easily with babies or rocking [in the rocking chair].
– Still can’t use ‘puter, hard to use [new] laptop, too.
– tend to still have hard time pronouncing thing (sometimes it sounds like it’s not from my head) and hard time spelling sometimes.
– Remembering music sometimes makes my ears hurt.
– Sick since last week (sort of sick) then more sick Monday [with a cold]
– Sometimes thinking HURTS
– Sometimes still dizzy/off balance; should I be doing something in particular or just waiting?

Tuesday, 13 Feb
– woke up dizzy, short and bad sleep
– went back to bed. Tingling on scalp and weird ear feelings spread all over body, down back. The L side very briefly felt tingly and numb, from shoulders and hands and feet. Then more tingling
– took Dimetapp [cold, too]
– after waking up, still pressure at ears, feet and hand feel numb, especially L side, only intermittent. Maybe feels weaker, but not sure if IS weaker

Monday, 12 Feb
– short stamina, only [otherwise a good day]
– nose of bridge hurts. Why?

Sunday, 11 Feb
– still L hand gets numb – feeling often, but still feels strong
– woke up often still uncomfortable or anxious (the quiet at night is when I feel best and not overstimulated [so I want to do things?])
– computer still bothers – ears hurt, pressure, tingle, nausea
– AVG line insertion points still hurt
– some afternoons/a.m.s still can’t see well
– not slept so good. Babies sick.

Weds, 7 Feb
– afternoon numb L foot, L lower side ankle (outer)
– sinus feeling
– vision worse in afternoon (after nap)

Tuesday, 6 Feb
– Tues cooked, but got tired. Got mad at Matt, dizzy all night, tingly head (left side more than right), ear pressures (more L than R)

Monday, 5 Feb
– talking too much made me dizzy [pastor nurse came to visit]
– occassional numb/tingling on hands, usually L
– noise is really exhausting
– still sinus headache feeling
– DIZZY especially with eyes closed
– didn’t sleep as well, but better than night before

Sunday, 4 Feb
– still congested-feeling, mainly L head and R ear; slightly dizzy
– Westin Oaks Galleria [day stay while windows replaced; best sleep in weeks!]

Saturday 3 Feb
– slept 3 hrs all night. tired!

Friday 2 Feb
– good day, some pressure and dizzy, rested all day except 6:00 – tried to do things with babies and eat but noise bothered and made myself nauseous

Thursday 1 Feb
– still random itching legs/back/butt
– intermittent numbness L hand (about 10-20 min, 2x day)
– L ear hurts

Wednesday, 31 Jan
– ‘puter made ears pressure, head tingle
– 1 hr after Tegretol [I started] itching like fire ants back, butt, legs, feet (still 4 hrs after meds)
– after lunch, nauseous
– sight not 100%
– itched/burned all day long!
– dizzy better after 9p
– NO MORE TEGRETOL (per Lopez)

Tuesday, 30 Jan
– couldn’t see well in a.m.
– L hand numb/tingly 20-30 min, more likely to drop things
– slept then lunch; after lunch, ears tinny, tingles on head, then lips, chin, arms tingly, then L hand and feet
– night – 3-4 times wake up dizzy from top of head
– use of ‘puter made uncomfortable?

Monday, 29 Jan
– in morning, pressure; intermittent; dizzy from top of head
– slept afternoon
– sight and hearing not as good
– intense pressure R ear
– FIRST Tegretol 100 mg (Rx: 100mg pm, am, 2 days, then 200mg pm, am, after) [Dr. Chen also thought I might have been experiencing some seizure activity, and wanted to add Tegretol in addition to the Keppra)
– nauseous and tongue/lips numb after taking?

Sunday, 28 Jan
– called Dr. Comair [on call; Dr. Chen off this weekend] – on-call neuro – agreed activity – call Chen Monday
– slept in afternoon, ears woke up buzzy, pressure, dizzy
– night – R pressure ear, dizziness, slept well but dizzy at top of head

Saturday, 27 Jan
– afternoon – 5p – R ear ring oud, then traveled to L ear and head tingled; almost lost consciousness
– ears hurt on/off (both or one ear, usually R) or intense pressure
– night ears buzzing and tingled on head (woke me up or prevented me from sleeping)
– finally stopped 5a

Friday, 26 Jan
– ears ringing and loud and dizzy after nap (woke me up)

Thursday, 25 Jan
– much better, but ears buzz woke up from nap

Wednesday, 24 Jan
– dizzy and nauseous in morning
– couldn’t see well in morning
– see much better
– less dizzy
– feel great
– around 4pm, DIZZY (but not intolerable). TIRED. Babies didn’t let me sleep.

Tuesday, 23 Jan
– another Keppra. Woke still very tired
– Tuesday took nap again in afternoon. Still tired!
– less cotton-mouth feel and drinking less (the dilantin getting better?)
– woke up seeing well but not as good as Sunday at night
Tuesday night
– another Keppra – 500mg in morning
– good electrolytes, elevated liver panel
– 200 mg Dilantin
– 500 mg Keppra
– peed less often and less thirsty
– vision good (not best, but better)
– bad sleep

Monday, 22 Jan
– Keppra at night [to begin weaning off the Dilantin in the event the Dilantin is causing too many side effects]
– better thirsty (not as thirsty) maybe becaues I was so tired – woke less frequently (Sunday, up all night) peed less frequently
– 300mg Dilatin + 500 mg Keppra
– very dizzy; after 4am felt less dizzy

Sunday, 21 Jan
– persistent nausea
– extremely thirsty — 5L? (and keep peeing)
– slept almost nothing last night
– awake every 1.5 hrs [to pee]
– can’t sleep. Dilantin interfere with sleep? Dizzy more during the day than at night. Think better at night (after Dilantin?)

Friday, 19 Jan
– Woke up dizzy (just a little) & nauseaus)

Thursday, 18 Jan
– big head
– cotton in ears (since Mon. aware?)
– sometimes granular feeling in jaw, in ear
– left side of face feels pressure/turgid
– left ear hurts

Wednesday, 17 Jan
– Wednesday @ home
– talking, writing lists just as usuaul [sic]
– in fact, because of the headache and some medicine, wouldn’t be much different except that few days again [ago, sic] had my body – and my little self exposed. I couldn’t have have [sic] talked if not well, or not even. Could not have talked to my babies. Forgotten my babies song. Forgotten them Thurs. Will try to work hard to remember again.
– Not sure what to do, but something will be different.
– five afters [sic] dialyntin [sic] MUCH better appetite, but still a little bit off balance and dizzy (will balance get better?)
– Cameron Naficy (& the anyreusm [sic])

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Bribing already works?

April 27th, 2007 by Joyce · 1 Comment

For my birthday all I wanted to do was to take a nice picture of the four of us. I thought after my angio on the 24th I could take a card and a small picture to the nursing stations familiar with my AVM in January. A cold got in the way of our plan last week (three colds, actually), so we decided to try the photo today.

David was game but Carmen was absolutely not interested in getting her photograph taken. Normally in love with her image on the LCD camera screen, she cried at the telephoto lens and bright flash. Toys, jokes, and multiple opportunities to admire herself on the LCD didn’t persuade her to change her mind.

Until Matt said, “Carmen, after Carmen takes pictures, we can eat at the restaurant.”

“Okay,” she said, and looked into the lens.

She wasn’t smiling, but we got our picture taken, and by that point that’s all we really wanted.

(Trying to persuade Carmen that Daddy and David liked having their picture taken.)

(Feeling more comfortable, but still not smiling.)

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Two boo-boos!

April 24th, 2007 by Joyce

After such a long day I should be sleeping, but to make up for lying down for much of today, my body doesn’t want to do that anymore. It wants to cough.

So, here I am, sitting up and coughing for a little while. It’s not so bad; now I can tell you a story.
Soon after I arrived home from my hospital stay, I sat down at the dining room table to watch C&D play. David saw me seated and ran toward me. Then he began to hoist himself up on my lap. “Oh, no, no,” I said, shirking away. “Mommy has a boo-boo on my leg. The doctor fixed it.” Then I pulled my pants down so C&D could see the gauze bandage.

They were impressed. Then David looked up at my head. “Now Mommy has TWO boo-boos!” he said. At the same time he noticed a needle stick bandage on my left arm. “ANOTHER boo-boo!” he said, pointing at it. “Two boo-boos!” (“Two,” beyond indicating the number two, also indicates for David “more than one.”) Then Carmen found the bandage from second, successful stick. “This one has a BAND-AID,” she said, stroking it admiringly with her finger. I didn’t even know she knew what band-aids were.

The gauze bandage was most impressive-looking, bulky and covered with a shiny Tegaderm, so C&D asked that I show it to them again, and again, and again. I decided that C&D don’t need any encouragement asking me to pull down my pants, and I began to tell them something about how Mommy was going to keep her boo-boo covered.

David stared at the pants, maybe wishing he could see through them, but Carmen moved on.

She noticed the hospital bracelet still on my arm. “Bracelet!” she exclaimed, reaching toward it.

I stood up. I’d sit somewhere else, out of reach.

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Angio Today

April 24th, 2007 by Joyce · 4 Comments

Angio today. This time I wasn’t dizzy and nauseous and having a stroke, so I was able to look around and appreciate the neurovascular radiology department at St. Luke’s. Dr. Mawad, who performed my first angio, wasn’t there this time. I tried not to feel disappointed; I wanted to walk up to him and say, “Hey, remember me? I’m okay, now!” Friday his staff told me he would be out of town this week. Dr. Morsi took the photos, instead. He knew who I am, but I wasn’t awake when we first met. He took 3-D angiographs of my AVM in the OR with Dr. Chen.

I felt a prick in my left groin and felt the catheter slide its way inside. I had a hundred questions to ask about the procedure and the pictures on the six LCD screens to my left. The screens weren’t facing me, but out of the corner of my eye I could see six different views of the vasculatre of my brain. The procedure room was quiet. Nobody held my hand, talked me through the procedure, or even made small talk about the weekend or the weather. Behind his glasses I could see Dr. Morsi concentrating as the x-ray machines spun around my head. I was concentrating, too, trying very hard to hold still and not cough like I had during much of the previous night. In a room full of people I felt lonely, but I bit my tongue and said nothing, lying still so the images would be clear.

The angio was more involved and intense this time around. Instead of being sedated and holding my breath for one bolus of contrast, I remained alert during the entire procedure and cooperated (by taking a big breath and holding it) for several rounds of contrast. The catheter traveled up my left femoral artery. The right artery is customary, but maybe Dr. Morsi chose the left maybe because he wanted to be fair. Actually, I think he really wanted to minimize complications with scarring. When the doctor injected the contrast, for some reason only the left side of my head really hurt; last time my whole head hurt. The hurt was something like a brain freeze, but over a much larger area, and the sensation was more of a heat burning (think sinking into a too-hot tub, too quickly). I’m not sure if I described any of this well, but maybe you get the idea. The worst part of the injection wasn’t the headaches, though, but the white-hot streaks of light speeding left to right every time I received a bolus of contrast. It was like suddenly watching a group of shooting stars streaking right before my eyes.

Then I felt the catheter run back out, and a little gush of hot, hot blood splash over my thigh. In a few minutes I found myself back into the holding area, with Matt holding my bag of books and his laptop.

My head still hurts. A collagen plug was used to close the femoral artery; I don’t know what Dr. Mawad did during my first angio; I’m assuming he sutured the incision shut. I found the concept of a collagen plug a little amusing, but also a little disconcerting. I imagine a cork in my femoral artery.

After the angio I lay around for a few hours, resting and reading and talking to Matt about our house and how we are going to fix it. Because it’s a house of architectural note, we just can’t paint it pink or anything, and constantly worrying about protecting its architectural integrity makes the whole repair process even more difficult than it already is . . . we’re trying to do everything we need to do before Vivian moves on, before the sun gets too hot for anyone to want to work, before the summer thunderstorms start. Some relaxing recovery this has been; I’ve lately spent it all on trying to figure out ways how to fix the house and not blow our budget more than we already have.

I guess I should note what the results of the angio were. It’s hard to say much, because I don’t really know. Apparently there is a bit of the AVM still left. That’s all I know. I guess that’s why Dr. Morsi was running so much contrast through my head; he wanted to get a really, really good image in order to figure out how much we should worry. In a couple of weeks I’ll visit with Dr. Chen, and hopefully they’ll have figured out by then what we do next, if anything.

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April 22nd, 2007 by Joyce

A “pit-chur,” Carmen and David calls them.

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April 22nd, 2007 by Joyce

My mother today delivered Easter baskets to C&D from their great-grandmother. The baskets gave C&D their first opportunities to discover the surprise–and sugar-buzz joy–of refined sugar.

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Orange Juice

April 21st, 2007 by Joyce

David taught me something about orange juice this morning.

Picking up his glass to the light, and looking through it: “Orange juice yellow.”

He smiled at his observation as he drank. He was right, of course. The orange juice was definitely yellow. Not even orange-yellow. Carmen looked at her orange juice, too. “Orange juice? Yellow. Orange juice? Yellow.”

Already they’re learning the world makes no sense.

After lunch, he and Carmen were sitting productively in the potty. They sat up together and admired their work. “Poopoo looks like man. Hi, man!” he said, and waved. It actually kind of did, and not even in a weird cubist sort of way. Then David looked at Carmen’s. “Carmen made poopoo like a birt. Tweetwee!” I love this kid. I really do.

At dinner, David asked for “tettup like snake.” He wanted a squiggly of ketchup on his plate, not just an ordinary glob. When does he start asking for turtles, kitties, men, and birds on his plate?

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