3 year’s post bleed

Hi all,
I’m three years on from my AVM bleed within my cerebellum. I’ve had a very positive enthusiastic outlook with the situation. Up to now I’m starting to feel more low mood as it’s just ongoing. Due to not having my independence due to my poor mobility, I think it all starting to wear me down. I had a bad right leg which I have put down to it compensating for my left leg as this is my effected leg. I’m not sure when it occurred though they say I had a stroke. I can only assume this occurred when I was in an induced coma as I have no recollection of this event. It’s not left me with full post symptoms, I just have a weaker left side. My walking is improving, though after three years of trying every day it just really wears you down. After all my researching I have not found anyone with similar to myself. I work everyday on my balance too as this has been taken back to scratch. Does anyone have any tips or stories which maybe of benefit to myself? This is the part I usually got no response as no one seems to have contended this to this extreme level. The one acknowledgement I make to myself daily is that this episode in my life is not permanent. I can and I will make it through it’s hardship. Thank you for reading. Jo

Hey Jo,
I want to give you a response. I would like to give you some positivity, but from my own experiences, I can’t. Post craniotomy my symptoms have been a real rollercoaster. I sometimes explain it like this:

“Somedays I could leap a tall building in a single bound (OK, so a bit of an exaggeration) , but somedays I’m lucky to be able to crawl out of bed. I just never can tell which days are which”

I’ve required a few neurosurgeries and each one has knocked me harder and harder. Initially after the first 3 operations I got back into life ‘fairly’ well. Sure I had adjust my normal or what used to be normal to be able to manage but I managed. But with each subsequent surgery there was a decline and as much as I wanted to get back into life and pushed myself to do so, my body/brain pushed back. Eventually, with a not too subtle hint from a loving wife, I had to accept that things had improved around as much as they were going too. Did I want to accept? HELL NO!!! But the reality was I had no choice and that was a VERY bitter pill to swallow and accept.

Now look, every neuro situation is different. Some people can come through all of the dramas almost unaffected, but for some of us this just is not the case. One of the worst things I did was try to compare my situation with others ie 'Well, if ‘John’ can come through it OK, why can’t I " and I tried to meet other people’s goals. I pushed myself too hard, too soon, doing myself more harm than good. Requiring further surgery. Ahhh, Don’t be doing that. Set your own goals, within your own limits. Take it from me, trying to meet other people’s expectations, over and above your own limits can be a bad, BAD thing.

I do have good days and I do have bad days, but then I have those days you wouldn’t wish on your worst enemy, we learn to manage the best way we can. But, and this is the most important, BE KIND TO YOURSELF.

Merl fom the Moderator Support Team

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Thank you for sharing. I truly wish I was able to adapt, though my circumstances are not in the region to take on adaption. I feel I have more healing to to before the storm settles. Once this takes places I’m hoping doors open. X

I can sort of relate to your struggles. I’m not as physically damaged but I had and still have some struggles with my right side. My AVM rupture paralyzed my right side for a month but after a lot of therapy came back to looking like your average person. My bleed was way back in 2000 but even to this day have some small struggles with my right foot. When jogging my right foot just lands flat. Balance also if standing on my right foot it’s not great but no one would notice.

My stroke and first bleed wasn’t in the same area as yours BUT at one point I too was unable to completely use my left side. Slowly but surely I started regaining everything with lots of therapy. It took alot of tears, sweat, and hard work. I am still trying to regain my left hand although it has open on its own every now and then. Recently I’ve been trying out CBD and it’s worked much better than my loved baclofen and PT/OT combined + botox. AND I have no results yet but we’re trying vibration therapy in PT/OT + I’m going to try the hyperbaric chamber next :slight_smile: Got the thumbs up from all my drs YAAAY!! So once I get a few sessions I shall report all my results in here. But worth mentioning to not give up just keep researching and trying things until something gives. I have hydrocephalus as a complication from my 1st bleed and my 2nd bleed turned ina full blown hemorrhagic stroke. Was in an induced coma right after for two weeks and was embolized. I am going on 3 years too. Chin up, we’re in the same rollercoaster of emotions. Some days are great and others we lose hope. We got each other and hopefully one day we’ll be back to “normal” since technically we were never normal to before with lol :stuck_out_tongue:

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Hi Jo,

My AVM rupture and surgery was on the right side of my brain. Since this injury occurred, my left side has always been weaker than my right. I had to undergo therapy at some point because my left foot started to drop or drag when I walked.

(If you would like to read more about the brain and both of it’s hemispheres, check this link out on brainmadesimple.com that I found for you. It’s layman’s terms so it should not be that difficult to understand.)

I also commend your effort on not succumbing to your current situation. Proper rehab and therapy is necessary in almost all post-injury cases. Now is your opportunity to set both a vocal and silent example and to be a leader for others struggling throughout life. Every day is an opportunity for reading, learning, or trying something new, maybe a new way to accomplish something if other ways have failed in the past.

:loudspeaker: If you only can remember one thing from this: Although I am still not fully recovered, The important thing is to NEVER GIVE UP, there is always more to do. Keep your mind and body both active so you will not lose what the Lord has still given you. Even every day people are not perfect.