EnableMe | enableme - stroke recovery and support

So I'm 19 months post stroke and recently found out that when I had my stroke and went to hospital I was never treated as having had a stroke... I had a CT scan the day I went in which showed nothing and they didn't do an MRI until the 5th day! The MRI came up saying I had a blood clot in my brainstem...

I was 34 at the time and can't help but wonder what if they had of treated me differently.. Would I still be the way I am today?

I could be a lot worse, I have left side weakness.. Suffer cognitive and physical fatigue.. My speech is only really affected now if I am tired.

It was blatantly obvious that I had had a stroke but apparently from the notes they thought I was bunging it on... How do u fake something like that? Why would you want to?

So yeah, I know that what's done is done but I seriously cannot help but wonder if this is how I should really be or if it could have been prevented if they did things differently 😕

Sorry for the long post... I just had to share cuz I'm really struggling with this at the moment!

Hello Chelle,

Thank you for sharing your experience. We are sorry to hear about your unfortunate experience and that your signs of stroke were not taken seriously.

It is completely understandable that you would be thinking about the “what ifs” in these circumstances and wondering about the different outcomes you may have experienced. Have you considered making a formal complaint with the hospital?

If you would like to talk to us about this on StrokeLine, please don’t hesitate to call us on 1800 787 653, Mon-Fri 9am-5pm.

Best Wishes

Kathryn- StrokeLine

Hello Chelle

I am also really sorry to hear about your experience. My case is similar to your own so I can relate to your feelings. I am now into my third year post stroke. At the time of my stroke I rang 000 and advised I had had a stroke and I also told this to the medical staff at the hospital; yet this was ignored. My MRI was rescheduled three times and finally undertaken on the third day of my hospital stay. The situation was not improved by a medical consultant saying three times "pack her up and send her home", fortunately I was not packed up and sent home. Some months later and when I felt up to it, I did write to the hospital regarding my situation, which resulted in a senior medical staff member calling me. To add to this, late last year after seeing a neurologist (as there are none in the regional area where I live) that the doctor writing the report on my MRI had indicated an incorrect lobe as being affected. In my early days following my stroke I often wondered if I had been treated appropriately in the first few hours would my recovery have been any different. I will never know. Post stroke I also faced much ignorance by local health professionals. Some months after my stroke I was grateful to come across a book 'How I Rescued My Brain' by David Roland. David's book set me on the right path in taking charge of my own rehabilitation and I will always be grateful to David for having written about his experiences following his stroke, as he was also misdiagnosed. I know the Stroke Foundation work tirelessly in improving the knowledge of stroke not only to health professionals but also government throughout Australia and have set up the enableme website, which I find helpful. Over time I am sure things will change. I continue to work on my rehabilitation and am grateful to the resources of the Stroke Foundation and their very helpful staff.

Chelle and Karen, we are so sorry to hear about both of your experiences. I work on StrokeLine and your stories are not uncommon. It really isn't good enough and highlights there is still such a long way to go in improving early treatment of stroke.

If you're not already a part of our Fight Stroke campaign you may wish to see other ways you can help us advocate for better prevention, treatment and care in stroke here.

Karen - I'm so pleased you at least had some response from the hospital and found David Roland's book helpful.

If you ever need to chat, please don't hesitate to call us on StrokeLine on 1800 787 653.

Best wishes,

Simone

Thank you Simone for your response. You have been very helpful to me in the past and I appreciate your comments.

My pleasure Karen. We are here anytime you need support or a chat.

Simone

Hi Chelle

Yes the "What if's...." are a huge part of recovery. I really like that you have posted about something that so many people would be struggling with.

I have "What if's" about so much. They are not so prevalent for me with so many years on, I was told in hospital when I presented that I could go home. I thought about how ill I was feeling and said no . If I had gone home then I can only imagine that I wouldn't be here today.

Acknowledging feelings is such a big part of how we process stuff. The stuff that makes us feel good and the stuff that makes us feel really uncomfortable.

Nobody can tell you not to think about the "what if's" and it is so good that you have posted about your feelings on the subject.

Keep searching for answers that mean something to you and know that you are not alone.

Wishing you all the very best!

Sue

I had my stroke while i was in Thailand. The doctor that saw me told my wife "dont worry...hes just drunk"....i checked myself out the next day. I recieved anti clotting injections after my brain stem stroke...:(

Struggling with the "what ifs?"...

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