Acoustic Neuroma

[Luna1956]

Hi

I had Stereotactic Radiosurgery 7 months ago for my Acoustic Neuroma. Lately I keep getting a pain in my head where the Neuroma is. Has anyone else experienced this at all ?

[Birdwatchers]

Hi Sorry to read you’re still experiencing pain.

I had Steriotactic Radiotherapy in Dec 2020 and I’m still experiencing a sharp stabbing pain frequently throughout the day. Being at home in the peace and quiet, it was bearable, but now I’m back at work where it’s noisy, phones ringing etc, it’s a lot worse. I’ve been referred for an early MRI rather than waiting the full year. My AN was 2cm and it was borderline whether to remove it or go with SR.

Hope you get a resolve for your pain.

Take care

[Luna1956 in reply to Birdwatchers]

Hi Thank YouMy Neuroma was 1.2cm The Neuroma just started growing fast when I had my usual MRI last summer

I didn’t get this pain often before the Stereotactic Radiosurgery I have constant tinnitus now and am lightheaded/dizzy daily. I also still get the Brain Zaps whilst trying to go to sleep.

I don’t know why I had my follow up MRI only 6 months after. I just was called for MRI like usual in June Result was “no significant change which is encouraging “

Have asked to see ENT for dizziness to hopefully get some vestibular therapy

Hope your MRI goes well

Take Care

[thetocs]

I had surgery in June 21, I get head pains going from seated to standing up. Also experience light headedness. Bit of of bum but I guess it's something I'll have to live with.

[Luna1956 in reply to thetocs]

The lightheadedness/dizziness is quite horrible .I think it is something we have to live with unfortunately.

[Kristyll]

Sorry not heard and I didn’t have STRS.

[Martin-mtig]

Hi - my (very good) consultant forewarned my that 6-7 months after my Cyberknife procedure (which will be Jan-Feb next year) I can expect some headaches and such - because the tumours tend to expand after the radio beams at that point, before they give up and hopefully start shrinking. This may be coinciding with you 7 month mark.?.

They also told me to expect fluctuatin tinnitus.

Out of curiosity - what size was yours and did you have Cyber or Gamma knife? Do you know how many "passes" were made/number of days you had th eprocedure?

Just curious for comparison.

PS. I found Diclofenac Potassium on prescription to be a MUCH better pain killer for this than Ibruprofen. If you don't have stomach issues, your cons. or GP will probably let you try it.

I also have been getting runds of acupuncture around my skull and head - it eases the tension in the muscles connected to the same nerves internally, and just seems to help.

all the best Martin

[Luna1956 in reply to Martin-mtig]

Hi It was 1.2 cm . I had 12 GY 1 Fraction Gamma Knife

I’m also thinking it’s worse because the Neuroma swells before it hopefully shrinks I can’t take Ibruprofen unfortunately

Acupuncture sounds good. Maybe I’ll look into that . Have had acupuncture for my allergies before, which helped a lot

Good luck with your treatment

[Martin-mtig in reply to Luna1956]

thank you - if you can try the Diclofenac NSAID instead of Ibruprofen you may give it a try? just a thought.

I had 3 fractions - it was really something am grateful for the treatment

[lupie-Cathy]

Hi I had gamma knife 9 years ago the pains do wear off eventually, took quite sometime as I remember. I still get problems with my facial nerve and the odd occasional stabbing pain with that but that could equally be caused by a mandibular joint problem not sure which! My tinnitus did eventually dull down a bit but has got worse recently after having a viral infection that caused labrynthitis so hoping once that’s completely gone it will dull again! I had my biannual MRI scan a week ago so still waiting on the results but as far as I know from previous scans all seems ok 🤞 it’s as you said light headedness, dizziness, brain zaps and stabbing they’re very common post radio surgery! hope yours wears off soon

[Luna1956 in reply to lupie-Cathy]

HiThank you for your reply It’s nice to be reassured that the symptoms I get are common after Radiosurgery

The brain zaps really scare me at times

I’m hoping that one day my tinnitus will fade a bit too

Also I seem to get dizzy when I sneeze lately which is a new one but I do have allergic rhinitis so may not be the acoustic neuroma causing that symptom

[lupie-Cathy]

It’s difficult isn’t it! We never know what symptoms are down to what! I do still get dizziness occasionally and I do think that sudden movement makes it bad so could be the neuroma causing the dizziness, but the rhinitis causing the sneezing! Swings and roundabouts come to mind lol 😆 hope your symptoms start to improve soon all the best x