Does it get better?

[Jade05]

I am about 4 months post occipital lobe rupture. I have poor recollection of my time after the rupture and in the ICU. My memories stop right before the rupture and began to build more consistently when I came home from the hospital.

My vision has improved significantly though I have some central vision loss, peripheral vision loss, and upper corner loss. It seems like as the days go by, the peripheral vision gets better. Central vision slowly is improving. It seems to improve from the bottom up and side in.

I just feel discouraged at times lately. When I first came home from the hospital, I was really tired and napping often. But I was also getting up and walking the entire day. Even though my vision was poorer, I somehow found my way feeding myself, setting up old iPods to listen to music, listened to podcasts, etc. I felt more active. Somewhere along the way, perhaps when I was taken off Keppra, I feel the fogginess mentally has cleared. But I find myself lying in bed often now. I had an angiogram last month and intended to take it easy at first; I just never haven’t seem to bounce back physically to where I was in February. I feel like I am in my head a lot more often, worried how much further my vision can improve and whether I can go back to my career this summer (I work in healthcare).

I’ve also had a few odd things happen in March that doctors attributed to anxiety though those issues have pretty much resolved. I feel more anxious/worried now than I did then.

I realize 4 months is a short time still in the grand scheme of things and I already have come a long way. It’s hard not to worry how much I will recover, when I can resume my career, IF I can resume my career. The past 3 years have been difficult working in healthcare. There were times I wanted to throw in the towel; now I want it back more than anything. I’ve never a fan of driving much but oh how I wish I could take my morning drive to work again with music blasting around me.

Has anyone been able to make a full recovery to return back to their careers?

[DickD]

@Jade05

I hope others will offer their thoughts because I’m sure there’s much to encourage you with.

I have avoided a stroke (and therefore haven’t been hampered in the same way as you) but the one thing I want to encourage you to do is to do your best to put it all behind you. To look to the future and say “This is over; it’s behind me” because I spent the subsequent year and a half after my embolisation feeling a bit less than perfect, getting on with life but I’d say being distracted by the unusualness of my head, the noises within it, the slightly odd sensations and all that and honestly, I don’t think that degree of introspection helps at all.

There’s much better healing to be had by some determination to resume life or by being able to look forward and be positive.

I’m quite sure there is more healing for you to do – especially because of the stroke – but to whatever extent you can put it behind you and work towards what you want, I think do it.

I spent that 1½ years worrying. I didn’t feel right. I had a week at about 6 months post op when it all felt very weird and I felt I slipped back but after various scans etc the overriding message was that I was fine and I just had to get used to the new pressures in my head – proper arterial pressure where it is supposed to be and nice low venous blood flows where they are supposed to be. If you can cut out worrying about it for 18 months or even 12 or 6 months you’ll do better than me.

And it’s worth it if you can.

I might be talking rubbish or I might be way too optimistic but that’s how I would look upon it for me if I went through the same thing a second time.

I hope my thoughts might help.

Richard

[GregF]

Hi Jade, To tell the truth, you sound wonderful for 4 months out. I had a rupture, 2 craniotomies and gran mal seizures for almost 50 years. I am not a fan of Keppra so I’m glad you’re off.
As far as the memory issue, I wish I could tell you something positive. I’ve lost huge chunks of my life.
The vision issue is something I know nothing about. I have heard on this site that it is a slow recovery.
You can definitely resume your career if you really want to stay in healthcare. (???) I understand the urge to get back to work at something… anything. I’m not really religious but let’s just say that the “universe” may be giving you an opportunity to do something more rewarding spiritually and less stressful. (My career was in law.)
I have had enough experience with my own impatience at the healing process to realize that kindness with oneself is a skill that is well-worth developing. I’m pulling for you, Greg

[Jade05]

Thank you Richard.

In some ways it feels like I’m being acquainted with my body again. It’s just weird for me since I thought I was handling things well (with a few emotional days in between) when I first came home. The professional in me thought they had taken me off the Keppra too fast to experience all the strange things I had shortly after. But all my scans and EEG were stable still and no concern of seizures. At one point I had resigned to agreeing with the doctors and thought perhaps this is me being more aware and attentive now that I’m off Keppra; it takes time to come “home” to that feeling.

It’s also weird…this new me physically, not even considering the current visual deficit or the trauma of having gone through a bleed. I had increasing migraines before this which I brushed off since it use to happen frequently in the past. I also had COVID very shortly before the rupture and was congested a lot. It feels like the rupture “reset” things in some ways but I can’t get use to feeling “normal” since I hadn’t been well in so long.

But I also have a few weird labs the doctors can’t figure out (not related to the AVM maybe) and still have to consider AVM treatment options; it is hard not to worry at times.

[Jade05]

It didn’t bother me the first two months or so. I came home and automatically created a routine for myself, visual deficit and all. I feel like I am regressing in that regard.

Yes, there is a feeling of wanting to go back to something, anything right now! Physically I know I can’t. I am responsible for lives and I can’t perform in my current state right now. I am just getting restless waiting. I’ve been ruminating on what my career means to me and the changes I should’ve made, could’ve made and now hoping I could get back to work to be a better professional me. I hope it’s not too late and my vision comes back to allow me to do so. It hadn’t been easy in healthcare the past 3 years; I became bitter at times. If anything, this experience now makes me appreciate my job more than I realized.

[randombeggar]

Hi @Jade05. Glad you’re ok! I wouldn’t have any medical advice for you but I will say, Stay on top of getting yourself checked. Ask questions, get answers, and remember that you have survived for a reason so go flesh that out in whatever way you feel is best! Welcome to the club!

[Timb]

Hi @Jade05

You’ve managed to get out of hospital and back home in 4 months so that’s already good progress. Remember what your body has had to cope with and try to work with it. Rest when your vision is off and push gently on the days you feel good.
After my bleed I was in hospital unable to walk or talk. 30 years later I can do both and managed fulltime work.
Only time will tell but you may not be able to get back your 100% target however aim for 80% and then any extra is a bonus.

All you can do is keep trying
Tim

[savanna]

Hi @Jade05 - first off, I am sorry this happened to you. In Dec 2020 I also had a occipital lobe AVM rupture and two subsequent craniotomies. I am still on Keppra because I had some continuing focal seizures. I have peripheral vision loss that is unchanged from the original event.

I want to say that I really really relate to the spotty memories. 2.5 years on and new things still pop into my head from the time I was in the ICU and waiting for surgery. I will share something that has been helpful for me in adjusting to my new way of living: allowing myself to mourn. I have been working through a long, slow mourning process. I am mourning the loss of some of my previous capabilities both physical and cognitive. I am mourning the loss of my whole way of living. I am adjusting to new paths forward that were unplanned and sometimes unwanted. And that’s ok and expected. Out of the mourning, for me, has come a deeper understanding of myself and a clarification of the way I want to move forward in life. I will attribute that to letting myself mourn. The important part here is, that didn’t happen overnight nor within even the first 6 months post-stroke. The time can care I pushed myself to take allowed me to eases into my new life and body. I can’t speak to how that might play in to returning to your career, but perhaps it can just add another perspective as you move through the next phase of recovery. You sound like a really impressive person and you’ve been through it, truly. Rooting for you!

With care,
Savanna

[mike_az_21]

@Jade05

In some ways it feels like I’m being acquainted with my body again.

I like that! That’s a very good way to put it

Like everyone who chimed in - seems like you’re doing ok, considering

You haven’t had treatment for your AVM?

I’m two months away from my 3 year hemorrhage/embolization anniversary. I’m back to what I was doing before at about 95% - although I am considering a career change asap(still). I still get odd symptoms - yesterday my right leg decided to go numb after a hard cardio workout. 2-3 weeks ago, I just starting feeling off/faint/dizzy when I was outside working a bit - but, we just started hitting 100
degree temps

All of this has been my new normal that I have been learning to deal with

[Garebear]

the brain is an intricate organ with many small pieces to heal it’s so hard to be patient i know but it’s once you are back at work you will be so glad that you were

[JD12]

A quick welcome to you! Thanks for being a part of our group! Take Care, John.

[Jade05]

No, no treatment yet. It will be further discussed at my next appointment. The angiogram recently looks stable. Which I sure is an added stress on me to consider on top of recovering from the bleed. I look back from where I was at the beginning after the bleed and I know there’s been significant improvement. It is just hard to think about what I have lost and haven’t gotten back yet.

[Jade05]

Hi Savanna,

It feels like I have been in a constant state of mourning what I have lost, then denial, then hope I can regain it all back, only to go through the entire cycle again.

[Georgie]

Hi Jade, i am writing to hopefully give you some comfort around what you are currently going through, which sounds very similar to what happened to me.

Please remember - often a longer recovery will result in a better recovery. Give your body the time and opportunity it needs to rest and repair, if you can! So hard, but so worth it.

I am 9 years on from my temporal-parietal AVM rupture (6 weeks in hospital with craniotomies, brain swelling etc and cranioplasty 3 months after). I have no memory of that time which made dealing with the physical recovery very frustrating; one minute I was a fully functioning mum, wife, daughter, sibling, friend etc etc and suddenly I was the child in the house (even more so than my children who were 5, 3 and 1 year olds at the time)!

My overriding feelings were 1. Disbelief at what had happened to me 2. Delight at being alive! 3. Exhaustion 4. Muddled (working memory all over the place) 5. Determined to fight to recover (missing patches of my visual field, left side weakness and obliterated working memory) but too tired to actually do any of the required ‘fighting’ 6. Why me? 7. Sad and guilty for what I’d put everyone through.

I plodded through each day with all these feelings following me but too tired to process them.

Bizarrely, each month would go by and I could materially see further and further into the distance - I’d notice aspects of a view I hadn’t seen before. Partly improving vision but also, kind of a reflection of everything about my recovery. I’m very lucky and other than ongoing epilepsy, I’m recovered and well - always focus on where you want to be and just alternate between being patient while your body quietly heals itself through rest, and taking the opportunities to get all the help you can and pushing yourself with your recovery.

I carry around some fear of it all happening again which puts a lot of pressure on making the most of each day but I just focus on the day to day smaller things & distractions.

Everyone’s recovery, situation and circumstances are so different but where I can generalise is that - the road ahead is long but you’re heading towards improvement (and work arounds). If you can, find patience and forgiveness and good luck with it all.