Friend has acoustic neuroma

[emmasmudge]

My daughter-in-law's mother was diagnosed with acoustic neuroma 3 years ago. They told her that her symptoms would probably go away in about a year. I do think she did a gamma knife treatment. Since the first onset to now, her tumor has grown. Her symptoms have never gone away and are worsened now because of the growth of the tumor. I am wondering how successful the surgery would be to have this tumor removed? Any and all suggestions or information would be greatly appreciated. She is in her seventies and otherwise healthy.

[Bluenorm]

hi emmasmudge . Respectfully I think your post is difficult to answer and I think demonstrates you don’t fully understand what has been going on ,and in my opinion the only person that can fully answer the question is the neurologist that has been involved with the care/treatment.

What I can tell you is that I have never been told my symptoms will “go away” . but it depends on if you are talking about symptoms on diagnosis or after treatment. Has she had treatment or not ? I was diagnosed in 2011 and never had any treatment as my tumour has never grown,but I’m still suffering from deafness and tinnitus.

[emmasmudge in reply to Bluenorm]

After speaking with my daughter-in-law, she said her mom did have gamma knife treatment. She was also told to give ut time snd her symptoms "could" go away in a years time. However, they never did go away, but we're less severe. However over the next 2 years, her tumor has grown. This has caused her symptoms to worsen. She has very bad headaches, lost Hearing in her ear and is very dizzy. This is what I know at the moment. She will be going to a different neurologist soon. Sorry for the vague information up front

[flappers]

Hi Emma, it’s much more complicated that growth equals more symptoms, as these can increase without any growth due to impact over a longer period of time of the Damage to nerves etc. i would recommend you look on either the Brainstrust website for support for those with acoustic neuromas, or the charity British Acoustic Neuroma Association (BANA) for advice for your daughters mum in law. Symptoms rarely go away with treatment such a gamma and can get worse for a while due to swelling, this can come and go. So it may not be growing but just reacting to treatment, they can’t tell for a few years. She should have a skull based nurse to discuss worries with. If she wants to talk to others who have been in a similar place to her, again, she can contact the above support available. Nice of you to try and find out more on their behalf. 💐

[emmasmudge in reply to flappers]

Thank you so much for your information. Apparently her MRI shows gross just in the past 5 months. This is such a confusing thing to figure out, but I appreciate your advice and your information greatly and will pass it on

[6625 in reply to emmasmudge]

I was diagnosed 9 years ago ,I was suffering from headaches n hearing problems, I had surgery as at the time the tumour was to large to have gamma knife, after operation I was left with no hearing in right side n some facial drooping,they couldn't remove my tumour because of its position, 5 years later after check up scan it had grown so was given stereotactic radiotherapy ,now I'm been monitored and scanned every year

[emmasmudge in reply to 6625]

Thank you!!! This is so helpful

[flappers]

Hi Emma, In the first few years after gamma or cyberknife radiotherapy the scans can show swelling that look like growth but can settle back down again. In 90 to 95 percent of cases, gamma knife is successful in stopping growth after this time. In the rare circumstances it does continue to grow, they will monitor and surgery could be offered if the growth indicates it will cause further issues. Your daughter’s mum in law should be given information and support about the impact of leaving it, versus surgery. Unfortunately most of the symptoms such as single sided deafness, tinnitus etc don’t ever improve, but flare ups that are caused by swelling post treatment can indeed improve. And as our brain adapts, and we heal from treatment, the impact can become less troublesome ( rather than disappear). Hope it all starts to settle

[emmasmudge in reply to flappers]

Thank you so much! I'll pass this info on

[Cwk123 in reply to flappers]

Hi there, i had gamma knife in september 2023 and then had a follow up scan in oct 2024, and i have been told there is some growth, due to swelling. On a positive note though, the consultant also said he could see that some of the cells are necrotic. Hopefully this tumour will shrink as i don't want to have surgery further down the line. Symptoms wise, I'm feeling ok, slightly more headaches, not sure if that is A/N swelling related, some on and off eye twitching. I struggle with left sided hearing loss but my balance is ok. Im soon to be 50, and not ready to take HRT yet 😩 but i know at some point if i need to, i would consider it. My main worry about taking hormones, i was told by my consultant that pregnant women and also if your taking any hormones, that could be a reason why some A/N grow very quickly. I don't think that is actually a certainty. Mine doubled in size over a 10 month period, hence why i had gamma knife. Consultant couldn't pin point the reason why. At the time, i was using the depo provera contraceptive injection, which i was on for 10 years. I decided to stop taking it just before i had my gamma knive treatment. I'm now waiting for my next scan, which will be at the end of this year. Fingers crossed

[flappers in reply to Cwk123]

Hi Emma,

I know it’s hard not to focus on the ‘it’s bigger’ bit, but that really is the swelling.. it’s excellent that there is necrosis, took two years for mine to die a tiny dot of that so to have it earlier is, I believe, great! Obviously we still have to live with the squatters but stopping growth and it dying from the inside is the aim and that’s what our treatment seems to, eventually, do. I’m 57 now, and went on HRT around the same time I had treatment. I was getting the night sweats and seriously couldn’t be having anything disturbing my sleep! I thought too about the impact of hormones, but then thought too about all the men having similar tumours, and figured it was worth it! My menopause symptoms went within a week and I’ve never looked back. ( I recommend the oestrogel gel and ustrogen tablets after much looking into the different versions) But you’re young still and may not need it, I was 54 or 55 I think! As for the twitches, they are intermittent, and hearing aids really help once you get used to them. I’m trialling some swanky private ones at the moment and they do make so much difference. I fought it all for a bit, but accepted I should use all tools available to me to live my very best life. I hope you can too. There is still way too much life and fun to be had! 😘💐

[Cwk123 in reply to flappers]

Thanks for your advice

[K92492th]

I was diagnosed with AN during covid and had to wait 18 months for diagnosis. I was told sometimes just to wait and see if it grows and it did. I had mine removed December 2022, I still have dizziness and imbalance but it is not as bad as before the operation and I have learnt to live with it. I am also totally deaf in my right ear, which means I now have no directional sounds and have Neen waiting 2years for audiology to fit a bone implanted hearing aid, I also had facial paralysis after the operation which did get better but then changed to synkenisis and my nerves grew incorrectly. It all sounds terrible, but you just get on with it, because what else can you do. I would take the advice of the consultant if I was her, as her age should also be considered. Good luck with whatever she chooses.