I am just frustrted as he!!. I can't do some of the things I used to do. I lose my balance easily and Get Angry all the time. Oh I should mention that I have had stents placed in aneurysm in my basilar artery, then a craniotomy to clip a new aneurysm right above it and now we discover that both are growing again and the only treatment because of the location and kind od aneurysms is another craniotomy and bypass to "Shut down the basilar artery" once and for all. I keep having seizures and strokes and my dilantin level jumps all over the place. Is it commmon to have feelings of anger all the time? I have had all vestiges of independence stripped from me due to this crud.

Thanks

Hi there, SDF, of course you are as frustrated as hell! Sounds like your brain has been traumatized in the course of all of the attempts to help you with repeating surgeries. I am so sorry it is so awful. You have my full sympathy.

I do not know if you have had much PT toward managing the neurological deficits, but I hope so. It is surely well indicated. I would have expected your recovery team would confirm your experiences as falling into the normal range so that you can gain a handle on noticing the triggers and avoiding or pre-empting them with other choices and appropriate self management. If they are not providing this basic information/education there is something wrong with them. Might need to find a better informed team perhaps?

I had a stroke in the basil ganglia area, my main symptoms were severe autonomic, all over- restless leg syndrome. Along with lost function on my left side. I was a mess. The whole month in an acute care rehab center, I was not allowed to pee alone, even one time for fear of my falling. I lost all of who I knew myself to be during that one month stay to learn everything to function minimally. Not a pretty picture, I was a very young 48. It was a close call for them to let me go home at all since I lived alone in an upstairs apartment and had no family or social network to depend on. They nearly put me in a nursing home.

Then to an ongoing outside program for adult onset disabilities sponsored by a Community College. basic fitness and functionality practices plus art and social games, building skills of all kinds normally taken for granted. This went on every week, regularly for three years. I can tell you that the traumatized areas of your brain will recover over time if you patiently retrain them without ever giving up.

The retraining is supposed to reach it's peak at six months according to the experts. But I assure you this is a false. Improvement is happening daily even 7 years post stroke. And I still am reminded of my deficits all day every day no matter what I do. I chose to not let it get me down any further than is needed to process the impact and let go once again to rest in this moment..

I never thought I would be doing so well now, compared to how I started. Even becoming an artist in my own right since the introduction to art therapy back then. Don't ever settle for less than you want in terms of functionality.

And yes being angry about the losses on the psychological / emotional level is normal and appropriate. Sometimes anger covers up the grief underneath, having a good therapist is essential to do the work without leaving some unaddressed. .

If however,you are enraged due to over stimulation and chronic frustration, brain trauma apart from the psychological and emotional impact etc.. that is another issue to deal with. Get a proper evaluation from a clinic which has experience or maybe a neuro- psychologist. I wish I had a chance to compare a neuro- psych -evaluation. from back then compared to now. Only had first one last year , I simply didn't even know of them, or their value. Maybe your docs are not as competent as they could be. Have you had anyone do some research for you?

At any rate, I can say that you are still alive and kicking and fighting mad, which is more than many can say after a stroke. You even typed out a request for help. That is more than I could do for up to a year after my stroke. It is a long slow recovery, but no one can imagine now I have ever had one.

f you need support I hope I might be one of your lifelines toward better times ahead, and insights on how to facilitate improvements in your levels of care. Along with tricks on how to get more of your needs met, and feel empowered and validated, rather than helpless or hopeless. Hang in there, and believe in the healing potential of your body more than anything else.

I hope they have educated you on what to expect when from brain injury. It helps a whole lot to know that mood shifts are normal. Also extreme need to sleep, rest often, tire easily, and aversion to sensory input is harder to manage without over-stimulation, and the resulting overwhelm effect. Everyone has a different experience. But those who have been there are the best able to understand.

There are some really great books, which I do not have myself, and can no longer remember the name, (of course), which describe brain injury and stroke and how others have coped. These are available in the library or from Amazon. I hope you can find the validation and clarity and know this is not a personal failing in any way, nor any kind of value laden reality having anything to do with your worth, your past health or anything personally flawed in you in any way. Wishing we could know without doubt why these things happen is futile. Do what you need to do today in this moment to honor just how much your life has changed. Honor how little control you seem to have now in some areas, and know you can only control the moment to moment choices on how to react, or the story you tell yourself. It wont always be this bad. My best choice of management skills was to refuse to compare the past with the present and refuse to look into the future or worry in any way. This is the path of surrender in many ways. I learned things I could not have ever learned and am a better human being in the end.