Brain Aneurysm Support Community

Disabled

Does any want being disabled after surgery?
Do you know how long recovery?
My doc said that the progress is going to slow after one year

Every person is so different. To answer your question about my history with work and disability, I went back to work after the first brain surgery for the aneurysm, but I went on disability after the second, when it became harder to keep up with the workload. I think it depends on what the job is, on whether there was a hemorrhage or not, which artery hemorrhaged, whether it was clipped or coiled, and whether there is epilepsy or vasospasm. I was a scientific director, had a hemorrhage, and had open brain surgery twice. I have seizures, and I have memory issues and learning slowness. There was no way I could do the job after the second surgery.
I know many people with different diseases have a long road to prove they need disability, but I was approved on the first try. My doctors were very helpful in getting the papers needed for the disability application.
I don’t know if progress at recovery slows down after the first year. I was told to do as much brain stimulation as possible, like reading and word puzzles, writing notes, and having conversations with others. Recovery is a lot of work and I am still trying to make progress. Glad you found this group!

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I just wanted you to know your not alone. I think most of us struggle.We are different but have something that is hardest to change. Hang in there and try new ways that could help. Hope it gets a little better for you. Nice to hear from you. Good wishes​:butterfly::gift_heart:

Thx you. I heard about going back to work is hard to keep on, My surgery was done last year. It is hard to be dependent now

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I am 8 months out from my surgery. What Kate, has said; is so true we’re are all different.
I do notice when I get stressed to much my head starts to hurt more. Try to find one or two things that relax you. We are here to support you. I so understand how hard it is to be patient. Hope it starts to get better for you. :butterfly::heartbeat:

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Hey Erny,
I have to agree with both Teresa and Kate. We are all different and so are our recoveries, trying to gauge our differing experiences is near on impossible. I have gone through 6 neurosurgeries and none of them have been the same. After the first 2 operations I recovered ‘fairly’ well, well enough to be able to return to my former employment anyway. It was not an easy thing but I slowly built up my stamina and abilities to be able to return and things travelled along OK for a while. Then I required another operation. I tried to do the same as before and build up stamina, that didn’t work so well and, ohhh, the frustration was HUGE. Three months later and I was back having more surgery and this one really did me in, I just wasn’t getting any better at all. I attempted to push myself a bit more. that was a BAD idea as I did myself more harm than good and ended up having yet another operation.

Since then, 6 years ago now, my symptoms seem to fluctuate something chronic, I can never tell how the day will go. I have found that if I do too much today, tomorrow I pay for it in agony, so pacing my activity (which is very foreign) has become a big part of how I cope. Formally I had 2 speeds, full tilt and stop. My former ‘full tilt’ is now not possible. I can go full tilt BUT knowing that I will pay dearly for doing so and it can take a couple days to recover from a single day of doing too much. NASTY.

Some people talk of ‘acceptance’ and this is something that I have a battle with. Sometimes that acceptance isn’t too bad, but at other times I rebel against it. I don’t want to accept ‘this’, but the reality is I have no choice in the matter. I really do miss my job but I know it is not safe for me nor my clients to continue in that role. By pushing to continue I’m placing both myself and my clients at great risk, so it’s safer for all if I don’t.

I am so very lucky to have a supportive and understanding wife as I’m fairly dependant on her. When I ‘can do’, things are OK, but when I ‘can’t do’ I am very reliant on her.

Please know, you are amongst friends here. We know because we live it too, this can be a long arduous journey and we all recover at differing rates. There is no set time nor rate of recovery.

Merl from the Moderator Support Team

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It’s not easy. Trust that you will be okay. The biggest part is accepting where you are. Have patience with yourself.we all heal differently. Take things one step at a time. I’m almost 6 years post surgery (coiling) and it’s still challenging being this new me.

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Msjay, 6 years is a long time, but it is still healing (recovery). That’s a hope

I have been a member here since 2017 but never wrote before. This topic of recovery and disability has touched me.

We are all so different and our experiences are never identical, except for one thing: we are changed. Often in ways of our obvious physical body, but I think (especially after reading the initial post and the responses to the it) often in ways not readily apparent to others. How we think, how we process, how we problem solve, how fatigued we get from things that pre-aneurysm would not have phased us. I often think it is those things that we can see but others might not see that really challenge us. Msjay hits it spot on: the biggest part is accepting where you are. You will be OK. It will be a new ‘OK’, but it comes.

Best wishes to all who were ‘drafted’ in to this new world.

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I’m really glad you decided to share Rah! Dr. Sperry in Texas did a study and discovered our brains can keep healing no matter our age. We just need to put the effort in constantly and consistently and never give up!