Head pain in Neuroma side

[Luna1956]

I had Stereotactic Radiosurgery in December 2020. I still have balance problems and constant Tinnitus and Brain Zaps when trying to sleep. I have been having vestibular balance therapy for a few months . Over the last few weeks I have been getting pain in my head on the Neuroma side and more frequent fleeting dizzy spells when moving my head. I also feel like my head is bruised when I touch the area above my ear .

I had my yearly MRI in June at my local Hospital which was only 6 months after the Radiosurgery. I had the Stereotactic Radiosurgery at a different hospital and was due the follow up MRI in December 2021 but they decided not to do the year follow up MRI due to me having one at my local hospital in June.

Could these symptoms be due to swelling which I know is likely in first 2 years after radiotherapy .

[lupie-Cathy]

Hi Luna 1956 I had similar problems after stereotactic radio surgery it does improve over time though, glad you’re getting vestibular therapy I’ve just moved and my new consultant has referred me for it, the therapist was horrified that I’d not had any since diagnosis. I had gamma knife in 2013 and had my first therapy session last week! Already feeling much more stable so that’s good. So keep on with it it does help. My tinnitus is occasionally better now too or maybe I just don’t notice it so much, do mention your symptoms next time you see your consultant or see what the therapist says. If you’re still uncertain about your symptoms you could ring the consultants secretary and see if you could get a phone consultation. But they all sound very familiar!

[Luna1956 in reply to lupie-Cathy]

I had to ask for Vestibular Therapy it was not offered to me I just feel anxious a lot with all the symptoms

Must try not to dwell on them too much

Thank you for your reply

[Martin-mtig]

Hi Luna - it all sounds par for the course, unfort. Have they explained and worked with you on what to expect?

First how large was your AN? I suspect since they did was it Gamma Knife it would have been under 15mm?

I had my Cybernife in June of last year. I was tod to expect the syptoms you are describing from 6 months. The tinnitus will come & go, and hopefully settle - but I am under no illusion, barring a welcome miracle, of ever being totally free of it.

The pain is iternittent - again, I was told thaat the Ans flare up over time before settling and giving up. Do you have medications? I was given a pretty strong NSAID anti-inflammatory as when I need it.

I also was given a strong anti-anxiety medication (not proponalol that's a joke) to reduce high point s of stress (aggravates things).

I also have had to really watch my diet - I don't drink so alcohol is gratefully not a factor - but other inflammatory foods - sugar - heavy carbs, etc are not helpful. Caffeine is not either.

I also research really good CBD - seems to help - but not the snake oil they sell in shops - the only reputable one that I can find it the heavily regulated and studied one from Israel - Provocan.co.uk

Also, for muscle tension leading up my neck, I use volataril in combo with orescrived Diclofenac Potassium (NSAID) - and also a topical application of DMSO (Dimethyl Sulfoxide - you can get it from the horse vet or amazon - high strength). But do not, under any cicumstances mix other NSAIDS with Volataril - talk with your doctor.

I'm also big on properly trained massage dee tissue therapy - where you can get it.I've also done properly trained acupncture - very helpful.

Also - I went right to the skull surgeon on all this - the Gps do not know what we're dealing with really, and get skiddish precribing the things that actually work...

It's a day at the time thing for me, and part of it is understading that it is not a quick fix post surgery - but I've coped with the support...

Best of luck and big hugs!

M

[Luna1956 in reply to Martin-mtig]

Thank you My tinnitus seems constant at the moment and has been for months

I am unable to take Anti inflammatory medication unfortunately

I also have Semi Circular Canal Dehiscence which doesn’t help the balance

[sadie2009]

It certainly could be, swelling causes all kinds of symptoms. I had srf in jan 18 and over the following two years was given steroids which helped symptoms. I also had the pain flashes which spiralled down deep in my ear. Theyve subsided. I've also had localised pain lasting a few weeks at a time was convinced my next mri would show growth but it didn't. My tu our is necrotic. Speak with yr nf nurse for reassurance. Good luck. (White ..tumor before, and grey... dead)

Tumor differences

[Luna1956 in reply to sadie2009]

It’s just so scary with all the symptoms They give me anxiety Hoping to get an earlier MRI

[IA786]

Hi Luna I had my tumour removed, apart from the tinnitus,everything else was perfect for a year .after a year I had severe balance issues and pains,epilepsy and partial facial paralysis.it’s something you will have to block out and is difficult at first but it’s possible to do for a few hours every day,keep positive and keep smiling will help,you stay care and best of luck 🍀

[Luna1956]

Thank you for your advice 😊