my tumor came back

[Smokey02]

Hi I was wondering if anyone has had their Acoustic Neuroma come back? I had surgery 3 years ago and had my MRI scan 2 weeks ago. My tumor has returned. I can’t believe it. I’ve finally have felt better it has taken 3 years to get back to normal. I had severe migraines after the surgery and loss of hearing on the left side. My migraines finally stopped back in October and now they want to do radiation treatments since they say another surgery would be too risky to do. Has anyone dealt with this? Any advice would be helpful. Thank you so much.

[6625]

Hi I had surgery 6 years ago to shrink my acoustic neuroma, but last year scan showed it haf started to grow again ,so last December I had stereotactic radiotherapy, 2 days ago I had my scan to see if it had been successful so just waiting on results

[Smokey02 in reply to 6625]

how was the radiotherapy? Did you have any symptoms after or during?

[6625 in reply to Smokey02]

Bit of a chew getting mask made n scans I only had one blast of radiotherapy bit stressful being in machine but I didn't have no problems during treatment or after it bit tired but nothing else,hope this helps

[Smokey02 in reply to 6625]

thank you that helps a lot. I’m scared of radiation so knowing that you are fine helps. Thank you

[Blappers]

Hello -

I am sorry to hear that it came back for you. There is always a minimum chance that it could grow back. I had the same case, only that I had limited option.

I had my first surgery in 2019 but that was not very successful as there was some bleeding inside and they could only take a tiny bit of the tumour before wrapping it up. I lost my hearing as well. It did not grow at all for 2 years and then starting growing aggressively which is not normally seen. Since the size of it was already large, I did not have an option for radiation. They did say that a second surgery would be riskier than the first but I had to go for it. I had it in June and they managed to take a majority of it this time leaving behind a wee little at the nerve centre. It's been 6 months now and everything is ok except the facial palsy which is expected to take 1 to 1.5 years to heal. If it grown again in coming years, I would have the option to take radiation because the growth is small.

Don't worry much, the radiation is much less riskier than the surgery and the fact that they have you the option would also likely mean that the size is not large. I am sure there are plenty who had radiation after surgery. All the best

[Smokey02 in reply to Blappers]

thank you for responding. I’m sorry to hear that yours came back also. Surgery is tough but you’ll come through and heal in time. Mine is growing again I guess due to where it is surgery isn’t an option they want to take. Just worried about radiation. Best of luck. Thank you

[Churchcottagechurch]

hello, So sorry to hear your tumour has returned. My acoustic neuroma was treated in 2007 with radiotherapy. In 2021 , I started being very unsteady walking, combined with dizziness, and exhaustion . M.R.I has shown it has also started to grow again.Appointment too see my consultant in January.

[Kellyc]

what type of surgery did you have? Sorry to hear that they must have left part of the tumor going through all that and then this I have heard of that more with radiation because doesn’t get rid of it.