What is my brain doing 2 months later?

The doctors said they expected me to make a full recovery from my bleed. I never faced a loss of speech and motor control - I was lucky - and 7 weeks later I do feel normal, except…

… There are a few things not quite right. I can still get overwhelmed in crowded places and just by life in general. I still get tired sometimes.

Why does this happen. What is my brain doing. Is it still healing (scans show no brain damage) what’s the science regarding this stage of recovery.

I am so lucky compared to so many other avm survivors, but I still feel a little alone in all this from time to time.

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Alex,

Welcome to avmsurvivors! It’s great that you found us.

I’m sure we will have a few people in a similar situation to you. What can I tell you in the meanwhile? First is that recovery from this sort of thing takes a lot longer than is reasonable, so yes, I’m convinced you’re still recovering and that will go on for some time. For myself, I didn’t have a bleed but getting to feel “back to normal” still took 18 months to 2 years. Since you’ve had a bleed, it’s reasonable to think it can take at least as long to recover.

Second, I’ve read a book called “Migraine” by Oliver Sacks (the name of the real doctor in the film Awakenings). In it, he describes all of the features of migraine and one of the things I learnt is that some people experience all sorts of emotions as part of the onset of migraine, including dread and fear and being somewhat overwhelmed. So what I’m thinking is that while your bleed hasn’t affected your motor skills, it may have had a go at whatever part of the brain deals with these other sorts of things. Equally, getting overwhelmingly tired is definitely something that some of us go through.

I think there’s every reason to be positive about continued recovery: you are honestly still very early in getting better.

Great to have you on board!

Richard

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Hello Richard,

Thank you for your reply.

Thank you for sharing your own experience. I don’t know much about non-bleed issues and recoveries, so would be interested to hear a bit more about that, if you feel comfortable sharing.

You mention 2 years, and also other people say that fatigue is one of the most stubborn after effects, of course everyone is different, but all in all, I know I need to be patient.

I guess I just want to know why recovery is slow. What is still to be resolved in my noggin? Is there inflammation. Are there toxins? What is going on up there that takes such a long time?

I understand that our brains are a mystery, so maybe the answer is. Nobody knows!!! The following is some info the nurse gave me:

Where is my AVM, located and what does that part of the brain do?

Your AVM is on the pericallosal artery on the right. This is part of the vessels that supply the front part of the brain as well as the middle area including frontal and parietal lobes. These areas can be responsible for your behaviour, memory and concentration as well as sensation and temperature control

The blood also got into my brain fluid at some point, which as I understand it, did go on to irritate my whole brain :see_no_evil:

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Welcome to the board!

Are you getting your AVM treated or have?

Fatigue < man, def has been an ongoing issue for me. It’s so in/out - makes things difficult at times, but - personally, I have been working through it. . . It’s a real fine addition that no one actually understands. . . It’s more of: you look fine & you were fine yesterday - well, I’m not today. . . So far, so good tho - for the most part

Let alone other sensations around my cranium - but, again - for the most part, it’s been manageable

Hey Alexx,
Initially, I had what I call a ‘Honeymoon’ period post neurosurgery. Everything was ‘OK’, not great, but I could function. I thought ‘HA, I got this thing beat…’ and jumped back into life/work/etc. Then one day, around 3 months later, something went pop and I found myself back on the operating table. My thoughts were ‘I recovered OK before, I can do it again’. Only it took much longer to recover. I was given the ‘6-8week timeline’ for recovery, only 4months had passed and I still was very symptomatic. I became really frustrated. One thing I have learnt is that that ‘6-8week timeline’ would be correct if we were talking healing of muscle and bone, but we’re talking about brain matter and that can take much, much longer. I am not a patient person. I want it right and I want it right NOW!!! So I pushed my recovery. This was the worst thing I could have done. I pushed too hard, too soon, doing myself some major damage. As for the fatigue…OMG. Prior to surgery I had 2 speeds, full tilt and stopped and I could go all day. Now, I’m lucky to get to 1/2 throttle and for a few hours at the most. I can push past that ‘few hours’ but I pay for that in agony. It can be a HUGE balancing act

Your brain is like the motherboard of your computer. Now, if you open your computer case and threw in a handful of aluminium foil flakes, what would happen? You’d have short circuits all over the place (and that’s if your computer ever works properly again). The circuitry of your brain has been messed with by the bleed (and the surgery) and the recovery can be VERY individual to you. Some people can bounce back relatively unaffected, for some it can take longer and then for some there can be lifelong effects.

The information given to you by the nurse is correct, but trying to quantify how much each area maybe affected is near on impossible as they can all be variable and all influence each other. For example if I have a headache, I can’t concentrate, my memory is a mess, then I get frustrated and this has an effect on my behaviour.

I have to say Alexx, this is really common. Often others can’t comprehend it and it can all be very isolating. We know this because we’ve lived it too, so come talk to us.

Merl from the Modsupport Team

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Alex,

Welcome again! In general, I over-share so I’m happy to talk about me!

My AVM was in the dura mater layer of the meninges. I don’t know which artery was involved but it was a straight shunt of blood into my right transverse sinus one single connection but high flow, apparently. The effects of it were that I could hear the whoosh, whoosh of the blood surging into my transverse sinus and actually going both left and right past both ears. Over time, it started to make me increasingly dizzy and a very odd feelings in my head when I was moving, e.g. walking or being driven. It was also inflating a bunch of veins on the outside of my head (there are some holes in the skull in a number of places and I think the pressure inside was enough to create a pulse on the outside of the back of my head, enough that I could press down on it and it was strong enough to lift my fingers. It was very worrying).

I managed to self-diagnose using Dr Google and frightened myself crazy. A stroke?!

I had an embolisation (= glue) to block it up in April 2017 about a year after self-diagnosing.

I think the weirdness that I felt post op was that suddenly, the pressures in my head had changed: places that had been a bit lower pressure than they should have been were suddenly up to pressure and places that weren’t supposed to be pressured had suddenly lost that pressure. Blood that was supposed to flow one way had been flowing in multiple directions was suddenly going where it should. Now, you’d think that was all good but it was very, very weird. Plus, I could hear a loud pulse which worried me for a while as well.

Overall, I felt quite unusual for several months.

In the September, I started at the gym and I don’t know if it was too much but despite feeling initially very good at getting back to exercise, I had several days of significant dizziness again, enough to go back to the GP and say “I’m worried I’m going backwards, not forwards”.

Long story short, I got referred to neurosurgery again, they did a couple of MRIs and an angiogram and said “Can’t see anything amiss. You just need to get used to the new pressures in your head.” That took until the September the following year to get that answer. I didn’t quite feel like everything was ok but I resolved that the best thing to do was to believe the doc: he seemed genuine and all that: so I set myself to just believe I was ok. If I had twinges, ok, they were just twinges. If I felt significantly poorly, then I’d ask for help again.

Honestly, I’ve had minor things since then: odd sensations: but nothing that feels like a stroke, so I’ve put it all behind me. It took about 2 years to settle into everything being ok.

As a non-bleed person, it feels trivial what I’ve gone through compared to someone like you but on the other hand, I think we all recognise the trauma of worry and that’s not at all easy. It is a most insidious thing.

Recovery is long and it isn’t a straight line. Take your time and believe in yourself. I am sure you’ll get there.

Hope something here helps. Always feel able to ask anything you want.

Richard

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Nobody knows, as far as I can tell. However, a craniotomy is a major assault on your brain. It really isn’t “normal” for it to see the light of day and have someone rummaging around. As Merl says, six weeks for a broken bone to regrow is easy. The brain, unfortunately, runs on a different timescale.

Hi Alex, I’m glad you’ve done so well even though not 100%. My brain never got back to 100%, still have seizures. I don’t like crowds either but I never linked the two together. You do have some control over feeling alone. Maybe just experiment. Best wishes, Greg

Give it time. I felt like my volume was “raised up” and I could hear everybody meetings were overwhelming everything was “too loud”

I feel normal now I use the AirPods a lot to block noise