My Recovery Timeline, Sensations, Long Term Effects

Recovery timeline:

t + 3 weeks: Staying in a dark hotel room near the hospital, attending day-patient psychometric testing and receiving counseling at the HCMC Knapp Rehab center. Failing a lot of basic tests & puzzles, things "I know I can do" but can't seem to master. Some trouble dialing long distance, troubles using an ATM. HCMC is a good place.


t+4 weeks: I fly back home but can't locate my car in airpot the parking lot. My friend arrives and we find it, and pay a no-mercy $960 parking bill. One the way home, we stop at In-N-Out burger, and I eat my first full meal in 28 days. I've lost 14 pounds.


t + 9 weeks: Driving my car to the library and the gym, though I know I'm pushing it a little. Trying to read Eckhart Tolle but have to "take it from the top" each time I pick up the book. Everyone wants me to read Stroke of Insight but I can't handle the thought of it, I'm squeamish about brain surgery. When I'm not sleeping, I'm spending long hours at the gym pool, or in the jacuzzi, lying flat across the steps, soaking my head in the warm water. I have two very short-term episodes of amnesia. They're a little scary.


t+14 weeks: Driving 30 miles to work, functional at work for up to 5 hours at a time, taking catnaps in my office, poor memory. Working about 4 days per week. Lots of medical appointments. I'm entirely unconcerned about workplace politics.


t+6 months: Most of my engineering ability back, still forget things, have to write a lot of things down. I never lost any actual engineering knowledge, I simply did not have sufficient memory & cognitive function for the first few months such that I could edit complex computer programs or analyze circuit problems in detail.


t+18 months: Probably close to the peak of my recovery, in which I feel my short-term memory function is at about 75% of what it was, and most of my cognitive ability is back, though in an entirely different form.


Sensations:

I often feel like a visitor from another planet. I'm somewhere, doing something, and then I drift into a feeling of detachment and just watching it all play out in front of me, like some movie. It's not a bad thing, I start to like these moments. I think it's my right brain taking over. I was really bored in my former life.

So many times, my brain offers up a completely different view of a situation, a view expressed very much in the abstract. I watch a very simple, literal situation unfold as some bonehead argues with a waiter, but my brain summarizes it as a waste, a senseless theft of the waiter's limited life energy.

My brain is constantly punning, and I make a lot of funny jokes. I'm grateful to be alive and care a lot less about trivial things. People around me seem to be overly concerned about things that hardly matter. I notice music a lot more than I did, and appreciate vocal harmony and often lock onto a voice striving to express something tonally. For the first time ever, I want to watch soccer.

I have trouble sorting out sounds in restaurants or other situations in which echoes exist. This gets better with time but I'm now acutely aware of the how much useless jabbering people do. If a restaurant has a tile floor and a lot of glass, I'm better off eating a sandwich in my car.

I'm able to design complex printed circuit boards more efficiently because my new brain wants to work from a starting point of symmetry and beauty. I don't have to work so hard to get the results I want, it all flows a lot easier, and everything feels lighter and less constrained, like I'm flying a glider instead of driving a truck.

I'm a lot more interested in the big picture, in the abstract, in the diversity and connectivity of things, rather than my old life of navigating a lot of trench-level minutiae. I wanted out of this anyway. I do have to grieve some loss of left-brain function, including a superb memory. But it's a lot more peaceful here on the right side of things, it's not boring, and there's a lot more room for my creativity. In many ways, I feel like a better person.

Long term side effects:


One feels "flat" for a long time after the event, and we tend to say things bluntly until some of the nuances of speech and cognition come back to us. I have lost some ability to speak Spanish with an authentic accent, and I've at times been a little too direct with my siblings.

I'm still very sensitive to ultraviolet light - things like computer screens and cell phone displays. When indoors working under fluorescent lights, it's best I wear ordinary sunglasses or I'll have trouble sleeping at night. I have to control the intake of light, though I have no problems with ordinary sunlight, which I cherish.


I get tired and feel "flat" if I've talked a lot during the day or have been in a noisy environment.

In the ICU, I heard a lot of people calling out for God, or for their mothers. I called out for both many times. This changed my life in many ways.


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Wow, David that was a really intense and descriptive story. Thank you for sharing it and congratulations on your recovery. Good on you to find the positive things in life to focus on.

Good luck to you as your recovery progresses.

Lori

Lori,

Thank you for the note. That's the first bit of writing I've done on the subject. I could write a lot more, it was such an adventure.

Have you had your aneursym clipped or coiled yet?

David

Hi David,

I loved your analysis of your experience.

Some of your experiences are similar to those I still have after more than 40 years, especially the tendency to say things bluntly and being interested in the big picture. :-) My walk with God and my relationship with my mother are also key.

Did you ever read "My Stroke of Insight"? I thought it was a great book.

Take care.

Carole

Carole,

Thank you for the note. I've read your profile and experiences, very fascinating.

I did finally read Stroke of Insight, about six months after the event. It was a little fluffy for me in parts but I thought that overall it was a good book and the right / left brain talk was right on target.

Where have you traveled? I'm interested in traveling more than ever. I've been to China six times.

David

Thank you for sharing your Journey...~ we so learn from each other...Cyber~thoughts your way Colleen

David,

Thank you, You write very well.

I haven't had either done yet. I am planning to have it clipped in October. I was lucky to find the Aneurysm by accident because I have an Angioma that had a bleed last August. I feel very fortunate that the deficits left from the Angioma were mild and have no lingering effects. Having to deal with the Bleed has helped me make the decision to treat the Aneurysm.

Stay strong and best of Luck!

Lori

Thank you Lori. Please keep in touch with me as you progress toward that October date.

David

David,

Thanks for sharing your writing. I can relate to many of your experiences as well. So difficult to explain my symptoms, feelings, emotions to others who have not gone through what we have. I had my clipping in December and next week is my 1st angiogram since surgery. Really do not want to be back in a bed at that hospital but I know it is my duty to my daughter to make sure all is well.

Best,

Nicole

Hi Nicole,

I'm surprised to read that you are having an angiogram 4 months after a clipping. I trust that there are no lingering complications.

Carole

hey david-hope this finds u well (we were on chat recently)thanks 4 sharin-helps when u know your not alone in recovery AND deficits,wish i'd found baf 2 yrs ago-first time i went to superwalmart i was almost afraid to enterWOW 3,000 tubes of ultra fluero's-thought Scotty was beaming me "up!!! i think things will improve- i wouldm't have been able or even willing to spend sooo much time in front of this monitor screen! a few months ago! keep writting & keep us posted-hey i just joined a support group- Success Stories - i think might "suit" you-you definetly qualify! I now have a juke box in my head!! songs pop in & out!last night was Stones "she's a rainbow" oddly enough since i never owned that one! Today is Ccr's "keep on Choogalin" i now appreciate all types of music -old or new xcept gangster rap! i can even tolerate some "smooth" melodical rap!!its like my mind has been tweeked-can almost tolerate my sisters cat now!!annoying high mantenance creature-time to get goin! thanks again for input,God Bless you& yours

/

Nicole,

Thank you for the note. I have been thinking about the experience most days since going through it, and there are so many more sensations I could write about. Together, we could all write a nice book I think. I see that your surgery was quite recent, so you're probably still going through a lot of changes. I wish you luck in your upcoming angiogram, it will probably be just fine. They'll give you some nice drugs including Versed, and you'll sleep for a while. I had a follow-up angiogram last summer and slept the whole day, it was nice.

Sincerely,

David

David, welcome...and forgive my delay; I have been pre-occupied w/several things...

And, I am t - 100 + months...I need not say more now...just please do not ask another question nor what I accomplished yesterday...or last week...I am here...

I am so pleased for you for all that you have accomplished..

Prayers for your continued recovery

Pat

David, If I didn't know better i think I was the one writing your story. One of the things I notice mostly was, the bright lites. I can't stand it to this to this day, after 18 mos . I loved singing in church & other places, & know I cant' do it. When i started back to church I notice the bright lites & music really bothered me. I still sit in a dark house with the lites off all evening. Ironic how we all tell the same story isn't it. I have a hard time talking as well. I brain is telling me one thing, but to get it out or explain something it is hard. I try & then I begin to mumble.

Take care.

Aggie

Aggie,

Thank you for writing. The light sensitivity problem has improved for me, but I'm almost at t+ 4 years, so I don't expect much more improvement. You're at t + 18 months so you can expect more improvement. Do you have a problem with sunlight? I do not. I have a problem with fluourescent lights, and the white backlight of computer displays & cell phones.

I have learned that it is important to wear sunglasses when using computers or working under fluorescent lights, and to keep a mental note of just how much light I let in, during the course of a day. Receiving too much light leads me to visual fatigue, but to other kinds of fatigue as well, including reduced speech ability and the ability to sort out sounds. There is a lot of research out there that supports this. So please use sunglasses.

I use just cheap Wal-Mart sunglasses, the kind that have the silver reflective tint on the outside. Within this basic type, there are different tints. The ones that seem to pass the warmer or amber / orange / red colors seem to help the most. The ones that pass the blue / violet colors do not block the ultraviolet light associated with computer screens and fluorescent lighting, so don't use them.

Remember, in my experience, an overload of white / ultraviolet light leads to all kinds of problems - brain fatigue across the board.

Please let me know how things progress,

Sincerely,

David

Hey Carole,

I think it is a timing thing with the hospital- they said I could wait until next month but since I was available- they scheduled it. For tomorrrow. Wish me luck...much love to you.

N.

Carole this only took me 9 years to answer. I did read My Stroke of Insight, eventually - like 18 months later or more. It was a little fluffy for me in the beginning but the second half in which she describes right brain takeover, was spot on. I hope you’re doing well.

David

Aggie, nine years to answer you, I’m sorry. How are you doing these days?

David

Hi David,

It’s good to hear from you and to know that you are well.

I am very thankful to be well also. This September, God willing, I will celebrate my 52nd Annieversary. I had a CT angiogram earlier this year and there has been no change in my annies since the last one was done 9 years ago. Thanks be to God!

Take care,

Carole

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