Anyone who had a second AN surgery?

[Blappers]

Hi - I had my first surgery in 2019 for a 3.8 cm AN. This surgery was in India and for whatever reason (I was told unexpected bleeding), they had not taken much of it however it releived the pressure off my brain stem. Needless to say that I lost my right side hearing but was free of my other symptoms like balance and vision problems. This year in Feb 2022, my annual scan Feb showed that it was growing. I was getting more frequent headaches and I thought something is changing even before the results came. Now balance and vision problems have started. I did an MRI again with contrast 3 weeks ago and it confirmed that the growth is as big as it was before the first surgery and it's growing at a rate faster than they expected. My cerbrum is pushed a lot to the left. A change this time is that I have a symptom which could be psychological, I occasionally wake up probably less than an hour into my sleep and feel that I can't breathe, maybe claustrophobic, I can't explain that feeling. I open the window and stand near it or quickly walk about and it will be a few minutes for me to settle down. I don't know what it is, maybe it's panic attack. I don't know if anyone has had anything similar?

I am waiting for a date for the surgery, docs days it is important that we do the surgery but the pandemic has caused a situation where it is difficult to confirm a date. He also said the 2nd surgery is going to be much more riskier than the first because of the scarring and differences caused by the first. Anyone who had a second surgery?

Also I go for CrossFit gym and is very energy consuming. Has anyone been advised against too much physical activity?

[Zhaleh_TBTC Administrator]

Hello and thanks for your post. Understandably, you have some questions about your symptoms. If there have been any changes to your symptoms, we would always strongly recommend you raise this with your medical team first, just so they can keep a close check on things for you.

We have some information pages specifically on Acoustic Neuroma, including information on treatments and surgery, which I hope you will find useful: thebraintumourcharity.org/b...

I hope this will help to answer some of your questions. Our Support and Information team are available, if you have further questions, or would like to talk things through. You can give us a call on 0808 800 0004, Monday – Friday 9-5. Alternatively, you can email us on [e-mail]. Warmest wishes, The Support Team.

[Blappers in reply to Zhaleh_TBTC]

Hello - Thanks for your response. Yes, I am informing my medical team for any changing symptoms.

[Blappers]

I had my surgery and I have a facial paralysis on the right side. Doctor said that the nerve is not damaged and hence will watch out for some time for the side to recover. Hope it will. Not sure how long. I have to put drops in my right eye because it doesn't close fully and therefore vision is not so good as I frequently have to put drops and it's slightly blurry because of it.