I had a brain tumour removed in Nov and I now have daily seizures.
I had the horrific experience of accidentally being conscious during the start of my operation. I could hear staff talking, but couldn’t open my eyes or alert anyone. I felt full body paralysis and as a result couldn’t breathe…
As a result, my life seems to be falling apart around me.
Has anyone here experienced awareness while under general anaesthesia?? I can’t find any support. None.
Welcome to the forums, and thank you for sharing this with us. It sounds like there's a lot going on for you . That must be incredibly difficult. We’re really glad you could come to the forum to share this with our community.
Please keep sharing your words on our forums. Many forum members may have experience with some of the challenges you mention and we think they will find great value in your kind and courageous words.
Hello Dear Clover22...🍀..
A very warm and caring welcome to the forums...
I am so deeply sorry that, that happened to you....That must have been so frightening...I am pleased that you came out of the operation okay...yet sorry that your experiencing daily seizures.....
Around three years ago...my daughter in law also under went brain surgery to remove a cancerous tumour...unfortunately the surgeon couldn’t remove it all...but she is doing fine now...with 6 monthly scans to keep a check on it....
Just wondering if you talked to your Surgeon about what you experienced?...and if he/she is helping you to get some support with mental health professionals..
Here for you dear Cover...please talk here anytime you feel to....
My kindest thoughts with my care and if it’s okay...I wish I could give you a gentle hug for real....sending you some of caring through the screen hugs.🤗🤗..
I feel so much for you with you having gone through receiving the upsetting news of the tumor, that highly triggering experience with anesthetic and being left to face the seizures. That's a heck of a lot to be managing. I hope you've got a solid circle of people to help you manage (specialists included).
I can relate to the anesthetic experience. Just thinking about it changes my breathing pattern. Being a gal who's highly sensitive to her thoughts, over time I've come to distract myself from thinking about it. Takes time to achieve this. While it's a memory, established many years ago, it's still occasionally triggered. I understand what I'm about to relay may be something you'll feel, so apologies ahead of the following: With my experience, they administered the paralysing agent too early, before finally putting me under. I could feel myself suddenly not being able to take a breath in and nothing compares to the sheer terror of that feeling. You can't breath and you can't tell anyone you can't breath because you can't speak. I had nightmares for a couple of weeks following. One of them involved finding myself on another planet somewhere where there was no oxygen. I'd wake up some nights gasping for air and crying. Since that incident, I've faced a few basic operations and the main way I've managed my fear was by establishing constructive conversations with the anesthesiologists who've help me, by talking me through what they're going to do, convincing me it's impossible for that incident to be repeated. They 100% make sure it doesn't happen.They've been absolutely brilliant, including giving me a mild sedative to help me manage my anxiety.
I've heard it said that our body doesn't know the difference between reality and a memory. In other words, if a memory is triggered, the body will feel the memory as if the incident is currently happening. Again, it knows no difference. So, to repeat over and over 'This is a memory, this is a memory, this is not real' can convince the brain and body of the current reality it's in. Easier said than done, that's for sure. Developing a set of mantras for breathing is something I also found helpful. 'Breathe' is one of my repeated mantras when the anesthetic incident memory is triggered. Strategic breathing also helps regulate the nervous system.
As I say, time has distanced me from that incident so I can understand how you'd still be intensely impacted by such a recent experience. My heart goes out to you.
Hello Glover, an experience like this must have been so awful and I'm so very sorry for the tumour as well as the seizures and firstly if you could copy and paste this in google there will be sites for you to browse.
I remember being asked if I wanted to be awake during an operation and quickly said 'no thankyou', but for you not to be able to move would have been terrible and my heart goes out to you.
The experience to be able to listen to what's being said and by whom would have been terrible and now that you're having seiures must be addressed by either a doctor and/or neurologist straight away, as I've had a blood clot and developed epilepsy.
Your GP may want to refer you to a psychiatrist and suggest this to be a good idea, but would dearly love to hear back from you.
Wow I only just joined the forums today and immediately found a thread with two people who've had a very similar experience to my own.
I've had to undergo general anaesthesia too many times and I eventually developed a fear (and similar nightmare) to what you are describing. I discussed this with my psychiatrist who mentions it's a common anxiety to have but an extremely rare incident (this doesn't reassure however).
As therising mentioned, both time and breathing exercises can assist. It never occured to me to discuss with the anaesthetist as well but I'll definitely keep that in mind for any future surgeries.
I know it's a horrible sensation to have. Especially when it recurs in your mind. I found it best to think of it as a separate anxiety altogether and treat it accordingly with my psychiatrist and psychologist. I hope you will find a clinician who can guide you through this. But you are definitely not alone in what you're feeling.