Long-term Recovery

Hello! I hope everyone is doing well. I’m just past the two month mark after my AVM embolization and craniotomy. Things have been going well and I’m working once per week with the plan to increase in October. I feel good physically. But I can’t shake this feeling of depression and low self confidence. I knew I wouldn’t be able to apply to medical school this year because of the AVM. Not knowing what my recovery looked like, I figured it made more sense to wait. But I honestly feel awful about not feeling fully recovered and guilty that I’m taking even more time to pursue my goals.

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I think @corrine is your friend in this area. She was going through a torrid time with her AVM towards the end of university and it was very difficult.

What I can tell you is that having a craniotomy is a major assault on your brain and the idea that you can get back into the driving seat of life “quickly” is not borne out by most people. Some people are very lucky, or the AVM easy to get to, or something, but really it takes longer than anyone would consider fair to feel well again post op. Two months is still very soon post op.

Don’t put yourself down at all. I think you’re being wholly sensible. What I would recommend is that, even if you’re not going to university this year, find something that you can focus on. If that’s the work you’re already doing 1 day a week, that’s great. If you need a bit of something else to focus on, have a think about what that might be.

I retired a couple of years ago and that’s a similar challenge: suddenly not contributing to society (if you’re not careful). It’s good to have a focus but it doesn’t have to be work or university. One of my areas has been to go to art classes: something I fancied trying out: and I’ve enjoyed it a lot. It also brings a tiny bit of structure to the week: Tuesday afternoons are reserved for art.

Maybe have a positive think about what you’d like to do that’s not work- or college-related. I’d love to know if that idea helps.

Best wishes,

Richard

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I really admire your determination. Just remember to go easy on yourself, you had a major surgery! Anytime you have surgery on or near your brain, it takes quite a while to heal (I was told that by a neurosurgeon). I’m also a nurse, and even though I know how to take care of patients, it was quite difficult to actually be one. I didn’t have to have a craniotomy to embolize my dAVF, it was still a long recovery. Next week is my two year mark of my stroke and surgery, and I still feel off at times. Be kind and forgiving to yourself. No doubt you will rock med school!!!

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Hey Vepvic,
Well, I can tell you now, you’re not the only one. In other words “Me Too”. Post craniotomy my plan was to take the 8week recovery the dr’s had suggested, then go back to life as normal. Only that didn’t happen and I sunk into a hole. That ‘8week recovery’ is more or less when the bone and skin have knitted securely, not fully, but enough to protect. What’s happening inside the skull can be on a totally different timescale. I was on a bit of a seesaw of symptoms, some days were good and I could function, some days I was lucky to crawl out of bed. It took me months to get back to some sort of normal, but I learnt what worked for me to be able to manage better. It wasn’t that one day I woke up and the world had changed and everything was OK, but rather over time the frequency and severity of symptoms decreased

Fast forward 16yrs and I had another incident, requiring further neurosurgery. And I thought ‘I’ve been here before, recovery will be the same’. Only it wasn’t, I wasn’t recovering much at all, so I pushed myself to recover and get back into life. I had a life, I had a profession and I wanted to get back NOW!! I pushed myself too hard, too soon, landing myself back in hospital having further neurosurgery x2, that was in 2013 and I haven’t been able to return to my role since. I’ve now had 6 neurosurgeries and I (metaphorically) kick myself every day for pushing too hard too soon.

DO NOT push your limits, take the time you need, the time your body needs. My mind was telling me to push to recover. My body was screaming at me to stop. I’d convinced myself I was building stamina by pushing those limits, but I am paying for it now.
DO NOT be feeling guilty about it. You should only ever feel guilt for your own choices. Things you have control over. Did you choose to be in this position?? Of course not, none of us do, but here we are.
One BIG thing I have learnt is that there is no such thing as a ‘Normal’ recovery time when it comes to neurosurgery. I’ve now had 6 and none of them have been the same in recovery nor symptoms not length. Your recovery can be very individual to you and it takes as long as it takes. The medicos will often provide you with a ‘Best Case Scenario’ often that ‘6-8weeks’, but only once has that guess-timation been correct for me.

BIG +1 to DickD’s comments, especially:

I found rolling those same incessant thoughts over and over and ov… damn near drove me crazy. I now have a few ‘tools’ or things to occupy my mind, depending on my ability and mindset at the time. That’s not to say there aren’t times when I do dwell on it all, but I try to avoid going too far down that rabbit hole. Try to look at the positives, you’ve been through it all and come out the other side, that’s a bonus.

Merl from the Modsupport Team

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Hi Vep, I read your entry and felt for you because I’d been through something similar. I’m pulling for you and wonder if you feel like sharing an update on your progress.
Hopefully you’ve ditched that guilty feeling because it’s a dead end. Easier said than done but it is possible to gradually shed some of those negative emotions. I’ve started to succeed.
Best wishes, Greg P.S. I doubt they’ve stopped training docs. As a matter of fact, it’s my guess that in America we’ll need more because we’re getting sicker, obese, and more unhealthy despite living longer.

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