Acoustic neuroma advice if possible

[Tiggerakafidgity]

Hi all

I’m new here and I hope ppl are ok today ?

Just a question or few if I may ?

So I was diagnosed with an acoustic neuroma middle of last year or there abouts.

It’s approximately 8mm squared and about 2mm from the brains liquid. Sorry not sure what the liquid is called.

I had an mri last year and have another mri due end of January to see if it’s grown.

So here is the situation. I’ve had various hearing tests and the results are not to bad just have lost the upper hearing range which is really annoying for me anyway.

Ok so if I’m correct the hearing test only goes up to the 8Mhz.human hearing range maxes out at I believe 20Mhz.

So I like designing and making headphones out of wood and alloy.

When listening to the headphones and music I can’t hear the full upper range.

This is due to the acoustic neuroma pressing on nerve for ear.

I would like to write a letter to the brain surgeon,who incidentally is one cool

Dude and loved the hobby I have of headphones.

If it’s possible to have this gamma knife radio therapy to have my hearing back.

Reason :

I’ve ADHD,Ulcerative Colitis,LQt syndrome,

Something to do with the erratic distance between the heart beat I think.

I’ve also got an old fracture to the spine which has three wedge fractures.

Paranoid personality disorder,depression,anxiety and also chronic pain all over my body with a dodgy hip.

Sorry for the long way around this ask.lol.

Music is my passion and comes with that the energetic self belief and confidence listening through my wonderfully crafted headphones.

Also happiness knowing that ppl who listen through my headphones makes them grin from ear to ear lol.

Why oh why can I not have a little more quality of life by having the op.

This will help me listen to my music in a much more refined happy way.thjs will help with my meditation and hypnotherapy technique.binaural beats need headphones which is fine.Problem not for ppl with hearing loss.this now has to be changed to isochronic beats to listen to with iPhone with out headphones.

Every year for the last 5-8 yrs I’ve been diagnosed with something else.I know what could I have possibly done wrong in life.

But hey that’s just the situation.

Any way I would like a better quality of life and I do believe I am not owed that if it’s possible ?

Are we all not aloud a better quality of life just to make up for the rest of the other situations we are in of no fault of our own.

I spoke to my physio last night that I see once a month.as I make it the last appointment I usually get approx an hour of the most wicked in depth conversation about pain,the make up of pain how we cope with our pain.etc etc.

This really stimulates my brain and she is so kind to offer such guidance with so much time.

She specialises in pain and what I learn of her is invaluable as it is for her to hear my in depth opinion on how my body copes with pain etc etc.

She was very kind to offer me the guidance of writing a letter to a brain consultant.

Use long words,large text,no more than one A4 side of paper and state in as fewer words why you think you should be offered the radio therapy.

I was just wondering if any other person on here as any invaluable advice to offer or has actually written a letter with any success.

I can imagine few ppl actually write a letter to a brain surgeon stating there case.

I may be wrong I don’t know.

I do know that as I’m 2 yrs under the normal age bracket for this acoustic neuroma. That’s stated by the nhs.

More consideration has to be taken in to the situation.

I’m ever so sorry for such a long winded story and totally apologetic for bad spelling and comprehension lol.

Most of my conditions ive fort hard to get sorted or dealt with in some what forceful manner.But hey,as they say “if you don’t ask you don’t get”.

I have built up a great rep-or with most of the specialist I see and they are also pleased to see me as I always have positive words to offer.

After all why not gain invaluable experience from the patient.after all there the ones who are ill with a certain condition.

Life is for ever changing and I would have thought books cannot be written quick enough to offer doctors and consultants invaluable information.

I hope somebody or somebody’s lol can help me in my quest

Regards

Tigger

Thanks for listening .

PS

Omg I think I’ve just written a novel lol

😎😎😎😎😎

[Jerrycat13]

Mine is 20mm about 2cm. Im on watch and wait. Gk could make ur hearing worse. Im leaving mine well alone and im having another mri in oct 2 c if its grown. My hearing is the same as urs so i dont wanna risk gk.

[Tiggerakafidgity in reply to Jerrycat13]

Hi there Jerry.

Ah ok thanks for the pointers

[Rebs2907]

I was diagnosed with mine in 2010, for years it was watching it and yearly not scans. However in 2015, the neurosurgeon said I either had to have Stereotactic Radio Surgery or Surgery and I was strongly advised to go for the SRS as it was the less risky. Leaving it was no longer an option as I would have presented stroke symptoms. It was growing to near the brain stem. And if I'd waited, the SRS wouldn't of been an option either. So I went for SRS. I had nausea and headaches during and about 3 weeks after treatment. There is some hearing loss which got worse this week in fact. But the worst thing for me is the buzzing and tinnitus. It drives me mad and it doesn't go well with stress.

[Rebs2907 in reply to Rebs2907]

Was meant to say yearly MRI scans

[andon]

Hi, I was diagnosed 4 years ago and put on W & W. The consultant told me it would be yearly MRIs but I insisted on having the first at 6months because I knew a tiny percentage can grow rapidly and I needed to know mine wasn't one of them. He finally agreed and my MRI showed a small amount of growth. Treatment options were discussed and I made the decision to stay on W & W for a while. After a small but consistent amount of growth showed on the scans each time, I had GK in August 2017. I have been fine since, apart from a brief smell of nausea and fatigue at about 3 months post treatment, and my last MRI showed definite signs of necrotisation at the centre of my tumour 'Sid'. I had already lost all hearing in my left ear and now have Phonik hearing aids. I actually feel I can still hear if wearing headphones and I think it's because I feel the beat, I don't know though lol. Good luck and keep us posted please.x

[Tiggerakafidgity in reply to andon]

Hi Andon

Thanks for the informative reply.

Yes I will keep posted.have mri next weekend

[bypass]

Hi, I ended up going to the USA for a treatment called FSR = Fractionated Radio Surgery as this was (20 years ago) the only treatment which sometimes allows hearing to recover but usually doesn't make it worse! You can read my story here - ask any questions you like afterwards. anarchive.org/chris.htm - My treatments team are now at Radiosurgery New York - see rsny.org/Acoustic_Neuroma.html

[Hipporanabella in reply to bypass]

Your account and journey are fascinating insightful and really helpful.

I am doing research for my sister who had just been diagnosed with a 1.8cm AN and is awaiting an appointment at Addenbrooks to discuss the options available after whichever neurologist asseses the MRI

I had never heard of AN until last week! But on reading up on it finding this forum and speaking to whoever will listen, it seems There seems to be strong favour by some for surgery and others to avoid..... I think I would always be against surgery ( period if possible in life ) but for AN for the reasons you stated,

Under under 2cm I believe she will have the option of either GK radiation or surgery.

I have also been reading about Proton surgery which is now Available in Europe and just at Manchester but not sure if the NHS will,offer this.

I wondered if the FSR that you mentioned was similar?

You didn’t mention how you have been in the last 20 years and if toy had any recurrent symptons and treatments etc..... would toy be happy to share?

In any case I sincerely hope that you recovered well and have continued to relish life.

Thanks for listening

[bypass in reply to Hipporanabella]

Hi, to answer your questions (1) After treatment I retained my pre-treatment level of hearing for over 12 years after I was treated. However it has declined markedly over the lest few years but there is no way of knowing if that is just normal age related decline (I am now in my 70s) or if it is caused by the AN. (2) Proton Beam AN treatment has been used for ANs for around 30 years in the USA, but as far as I know very few people have been treated worldwide. I think (I am not a Doctor) that this is because the advantages are much less marked for AN patients than they are for Cancer patients and since there are very few such machines world wide it makes sense to use them where they can do most good. From the AN patients viewpoint this means there is little experience to base treatment on (I suspect there is zero or close to zero experience in the UK) (3) FSR is not similar as it uses a LINAC machine (Liner Accelerator) with the dose divided into 3 to 5 equal portions given at 48 hours or more between doses. The theory being that the healthy tissue recovers between doses and side effects are reduced. The Cyber Knife Machine was specifically developed to make such treatment easier (it also uses a LINAC) but for some reason the UK NHS uses it just like an ordinary LINAC which seems to me to defeat the object - However, I repeat, I am not a Doctor and they may have a good reason for this - If anyone knows the answer I would be interested to hear it. (4) Apart from limited hearing on the AN side and ongoing tinnitus, 21 years after treatment I have suffered no other AN related issues. My balance remains better than average (for anyone without an AN) as it has been since 12 months after treatment. Any other question, please ask.

[Hipporanabella in reply to bypass]

Many many thanks for taking the time to explain these things....

I am actually doing research on behalf of my sister (45yrs) just recently diagnosed with an AN 1.8cm and awaiting an appointment at addenbrooks for a consultation to discuss her options.

If you don’t mind I’ll maybe pick up again when we know a bit more and meanwhile I wish you a continued recovery and good health

[bypass in reply to Hipporanabella]

Happy to answer any questions either now or later. In the meantime, you could show your sister my story. However you both need to remember that I was treated 21 years ago and things have (hopefully) changed since then! See anarchive.org/chris.htm

[Hipporanabella in reply to bypass]

Thank you