Has anyone been refused gamma knife f... - Acoustic Neuroma ...

Acoustic Neuroma Support

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Has anyone been refused gamma knife for 2 cm acoustic neuroma?

Gardener21 profile image

I have an AN of 2cm yet been told I can’t have gamma knife due to its position & that it will swell with gamma thus causing more symptoms. Surgery it seems is the only option but how long or how bad do I have to be before I am put on the waiting list? It will surely grow & cause worsening symptoms anyway. I hate this ‘limbo’ situation, I’m so anxious.

31 Replies

Hi, I carn’t answer the situation around the treatment for your size. When scanned mine was 4cm x 2.5cm.

If your surgery approach is the same as mine labyrinth and if surgery times are the same regardless of it’s size then you could be in for a 3-6 month wait depending on your location in the country and whether your main hospital that does this treat has an ICU that’s impacted by Covid.

However it also comes down to symptoms. The more symptoms you have the higher up the waiting list you’ll be.

Gardener21 profile image
Gardener21 in reply to Steve_04

Morning, thank you for replying. I’m under Kings in London as I live in Kent. Due to covid, my appointments have been by phone, which to be honest were late in calling and rushed when they did call! I’ve another appointment with the consultant on the 22nd. I was told by the nurse to ‘just carry on as normal’ when I don’t feel normal so that’s not very helpful. How bad were your symptoms?

It’s such a horrible thing, and I’m sorry to hear that you have had an AN too but glad for you that it’s been operated on, I hope you are feeling more normal now.

Did your recovery go well?

I guess mine isn’t big enough to cause the hospital any alarm as it’s only 2cm. The only symptoms I have are constant unsteadiness that makes me tired fighting against, and some loss of hearing in my right ear. A hearing aid helps a little. If I have a bad nights sleep I am really unsteady and clumsy the next day. So tiredness doesn’t help at all. Driving is fine though, I don't have a problem with sitting at work at the computer either.

I am so anxious, and conscious that I’m 61 next month so a huge operation will take its toll. Its helpful to have joined on here though to read of other people’s experience. Again, thank you for taking the time to respond. 🙂

Steve_04 profile image
Steve_04 in reply to Gardener21

Everyone’s symptoms can be different with different stages. Anxiety is normal and can make it feel worse.

I’ve not yet had my operation. Seen private and nhs consultants and my main hospital QE in birmingham can not accommodate. However they’ve reached out and found two hospitals that can, so within the next 3 weeks I should have my surgery.

I started off with moderate - severe hearing loss with a high pitched tinnitus.

I’ve had headaches and I have some balance problems along with a slight bit of vertigo.

I’ve been getting shortness of breath and numbness feeling down my left leg.

The face side of my neuroma gets numbness and my right eye can twitch from it.

I’ve also had nerve pain in my neck.

Whilst it can seem easier said then done as everyone is different.

It is treatable and it is benign. Try to focus on being positive.

If you haven’t already then BANA uk is a support group that maybe able to help you also.

Gardener21 profile image
Gardener21 in reply to Steve_04

Hi, sorry I thought you had been operated on but fingers crossed that your appointment goes through in the next three weeks, covid isn’t helping the situation at all. Nerve pain is horrible and so debilitating, I have tinnitus too which gets louder the more stressed & tired I am. Had it fir years. Considering seeing my own GP but I don’t really like taking loads of tablets that might mask worsening symptoms.

True, it’s a plus that it’s benign, I am relieved for that. I guess as I’m fairly newly diagnosed it’s all a bit frightening. I have looked on BANA so will go back there for more support and info.

Thank you for corresponding.

My AN IS 7.4 Cms, like you I do not have many symptoms, slight loss of hearing, unsteadiness, and vertigo. There was talk of GK treatment and then along came covid. I am 83 and have same doubts about having treatment. I have next MRI in August.

Gardener21 profile image
Gardener21 in reply to Lynsia

Hi, thank you for replying. It’s very worrying, I’m newly diagnosed and very anxious. It’s a nasty thing in an awkward place but it is benign. Covid isn’t helping at all. Unsteadiness is my main issue, along with high pitched tinnitus but I’ve had that for years so more or less get on with it. I hope you get some treatment soon.

Ask them if you can have a fractionated treatment using Cyber Knife. This SHOULD minimise and possibly eliminate the risk of swelling and thus make simple radio surgery an option for you. Good luck

Thank you, that’s a very good point. I will ask the consultant on the 22nd when my next appointment is. As my AN is only 2 cm I don’t really understand why I can’t have some sort of gamma therapy before it grows bigger. Thank you for replying, it’s calmed my nerves a little hearing from others in the same situation. I hope you are ok.

Hi, I’m in a very similar situation, but with a 17mm AN, also been told by the team at kings that I’m not a candidate for radio due to position of the AN pressing on the brain stem. As it’s not large enough to warrant surgery I’m on watch on wait. Yes, that is nerve wracking but I do understand sometimes the safest thing is to do nothing! It may still grow very slowly so surgery could be a way off, I also though have the question for them Re outcomes if this is performed in a smaller tumor than waiting for it to cause more issues. I am waiting for my second scan results and consultation with kings. I too am in Kent (Whitstable). I have found audiology helpful with a hearing aid and tinnitus masker helping a bit, walking by the sea the best though! It’s a tricky thing and a long journey ahead I guess. We can support eachother! Remember to breathe and know you are not alone. Lin

Gardener21 profile image
Gardener21 in reply to flappers

Hello LinBless you, that is more or less what I have been told by Kings, I have an appointment (telephone) with the consultant next Monday 22nd.. I will be asking that very same question, and also asking if I can see my scan picture as that’s not been available to me up as yet.. I’m not far from Whitstable, I’m in Maidstone, and frequently go to Seasalter or Whitstable for sanity walks on the beach. It would be lovely to support each other, I am very anxious. If you would rather e mail me than use this platform my address is bladd1960@icloud.com

Have a good day and thank you for the moral support! Much needed during these difficult days..

Brigitte

lupie-Cathy profile image
lupie-Cathy in reply to flappers

Hi just to say my An was pressing on my brain stem but I had gamma knife ok mine was 1.8 by 1.2cms but was long and thin and the 1.2 bit was the end of the tumour folded over against the brain stem so actually if you straightened out it was 3cms but as I say very thin I don’t actually know the thickness of it, it was as though it was growing out of the nerve sheath and just stayed that shape as it got longer rather than bulge out in to a more circular shape weird eh? But then I’m weird lol! Maybe ask again about gamma knife, it was really easy and although I had side effects and it took a while to get over it all I have only had a small further hearing loss and an increase in my tinnitus. I went to Sheffield for mine. What ever treatment you have good luck all of you x

Margyr profile image
Margyr in reply to flappers

Ooh lord your so right we must support each other

You should ask about fractionated treatments which will minimise the chance of swelling and possible associated problems. These can be done with Linac machines but these days the Cyber Knife which was specifically designed to give fractionated radio-surgery is a more likely option. Insist on an appointment with a Cyber Knife specialist if you wish to explore this option. My 25mm AN was treated with four fractions very successfully but as that was 23 years ago it was by Linac. Good luck.

Hi there surgery is my only option too as my 2.4 cm AN has cysts which can swell up. I am on the list too, and they reassured me that they carry out the surgery 1500 times a year. The brain tumour charity information pack is really good with questions to ask that I hadn't thought of. Good luck and wishing us all on here well x

Thank you, that’s very reassuring to know that so many op’s are carried out each year. I hope covid hasn’t impacted that too much. I have spoken with the consultant at Kings and I feel more confident now. Good luck to you as well, I hope you are operated on soon! X

Thank you, you too! I'm under Kings in London, I think they'll look after us well xx

If it helps to. This is a pretty good write up on AN surgery. It’s from Salford hospital which I have been informed is one of the best in the country for treating AN’s.

srft.nhs.uk/EasysiteWeb/get...

Very highly rated by someone who underwent surgery 3 years ago, Sara Crosland who is also an ambassador for BANA and wrote a book on her experience dealing with her recovery etc ‘sickbed to summits’.

Gardener21 profile image
Gardener21 in reply to Steve_04

Thank you I will read through this later. I’m under Kings in London & have been given an operation date for next month. Anxiety through the roof but mine is 22mm & I’m not prepared to watch/wait/deteriorate.. it’s a horrible thing in an awkward place, I don’t want it in my head.. I wish you all the best with your outcomes.. it helps to be able to compare notes on this site..

Hi I was refused GK due to size of my AN which was 28mm I had operation to debulk it it now measures 10mm

Morning.. thank you for replying.. I had a call from Kings yesterday.. they have given me an operation date for April.. so a whole new level of anxiety now.. it’s all happened so quickly from diagnosis to operation in a few weeks time.. mine measures 22mm, I said I didn’t watch to watch and wait/deteriorate before surgery was considered. Relieved to have a date now & fingers crossed it goes ahead. How was your recovery??

Steve_04 profile image
Steve_04 in reply to Gardener21

That’s a good turn around in a timely manner how it should be. I was diagnosed in January and had to push for my surgery and even then I’m having to go to a hospital 100 miles away as my one that deals with this have allowed there ICU to be run by Covid patients instead of putting this in places like the NEC that was set up for Covid patients. Mine at the time was 4x2.5cm. I can understand the anxiety. Try to look for positive things, many people come through this and I’ve not heard of any bad treatment yet. Talking to others helps, I even joke about mine. I’ve referred it to a parasite taking up temporary accommodation in my brain. ( on that note I haven’t thought of how much rent I’ll be charging it yet ) Haha.

Another positive note for you, some people have had to wait months, breath a little you’re being looked after by skilled surgeons and in a good timely manner. Try and forget about the risks, they’re low risks and I’ve seen a very scary report detailing my risks, however that’s all they’re. Focus positivity and deal with any associated risks or complications should they arise after surgery.

We can all do it. Stay strong.

Margyr profile image
Margyr in reply to Steve_04

Good advice

flappers profile image
flappers in reply to Gardener21

Wow that is so quick, must raise you to a whole new level of worry, but hope also reassurance that they are listening to you and acting so quickly. I hope our date to meet up can still happen, but also you can ring me anytime if you need a chat. Lin x

I don't know what yr financial situation is, but Proton therapy can for some be a viable alternative to GK & CK an surgery. I had an assessment at the Rutherford Cancer Centre. Mine is not workable for proton therapy, but some are lucky with it. Apparently less side effects, and more hearing retained. therutherford.com/

It will cost from 200-400 for an assessment. They give you a complete costing if they can do it. They seemed very reputable and straightforward with it.

As for the frustrations: try to keep perspective. Do they have two benchmark MRI's? That way you can tell the rate of growth. It may be slow growing, most are, and you can relax, let the system do its thing and not be as anxious.

I am (oddly) friends with one of the leading brain tumour specialists at NYU/Johns Hopkins in the USA - who has reassured me of the slow growth rate and such.

Hope that helps at all!

big hugs.

Hi, thank you for replying.. Kings have now got me booked in for an operation on 23 April.. I can’t have radiotherapy, I don’t want to ‘watch & wait’ as I feel that is doing nothing.. the consultant said outcomes were better & surgery easier on a tumour my size so I see no point in waiting. I asked for the opportunity to have the operation before I get older (I’m 61 soon) my symptoms become worse and whilst I’m still fairly fit.. I’m very anxious, never been in hospital for any length of time.. I’ve not heard of proton therapy but will look it up.. Sorry to hear that you have this tumour too.. the symptoms are not pleasant, I feel unsteady all the time and tinnitus is dreadful.. persevere, I’m sure we are all in expert hands..

Big hugs to you as well 🙂

Mt22 profile image
Mt22 in reply to Gardener21

Good luck with your op and recovery x

Gardener21 profile image
Gardener21 in reply to Mt22

Thank you.. I’m so anxious now, due to go in next Thursday 22nd April.. just praying there’s a bed & it’s not cancelled, the waiting is so difficult.. wondering if I’m doing the right thing, but it’s not going to go away & I'm not getting any younger.. interesting to read your posts, I’m really wondering how my recovery will be but it seems everyone is so different with each recovery really individual. It’s the dizziness I’m dreading.. if it remains the same as it is now I can happily live with that.. just got to wait and do my very best afterwards.. Hope you are getting some answers, take care.

Best regards

B x

Mt22 profile image
Mt22 in reply to Gardener21

Of course you are! Fingers crossed for you. Personally I think you’re definitely doing the right thing and I dread to think the state I’d be in now if it wasn’t for the amazing surgeons. My recovery has been amazing and I have only, as you’ve seen, had pain on my hip bone after the op. Everything else has been spot on and no issues! I had an awful time with dizziness and falling over before hand for a long while, I found it difficult to function but now I have 0 dizziness or balance issues, even after my hearing&balance nerve has been cut. 5 months post op and it’s as if it never happened! As you say, each surgery an recovery is completely different. Remember to get plenty of rest, listen to your body and follow any advice they give you. You’ll do amazing. Hope it all goes smoothly for you X

Gardener21 profile image
Gardener21 in reply to Mt22

Thank you so much, that is so encouraging for me to hear.. 🙂 all too often we focus on the negative and see an operation as a ‘last resort’ when in fact operations improve the quality of life for thousands upon thousands of us! Very reassuring to hear you speak so highly of surgery & the surgeons. All my appointments have been by phone so I won’t meet any of the team until I’m admitted..I am fairly unsteady now, worse if I’m tired or don’t sleep well. I feel like I’ve just got off a long flight or a bumpy channel ferry, it’s difficult to describe it. I’m not sick though & my appetite is intact! I don’t fall over but I’m very clumsy and always covered in bruises where I bump into things. I get on my own nerves some days!

I’m due to have the translabyrinthe approach (sorry if that’s spelt wrongly) so will lose my hearing, which is no great loss to be honest, and I’m assuming my balance nerve will be cut as well, he hopes to debulk as much as possible (or remove) and preserve my facial nerve.

So good to hear some upbeat news from you, the waiting for the day is the worst..!

Glad you have recovered well apart from your hip, fingers crossed it improves with time.

Very best regards

Brigitte x

Mt22 profile image
Mt22 in reply to Gardener21

Absolutely! We are so lucky to have these people and medical procedures 🙌🏻 it’s definitely better to focus on the positives especially in these situations where everything seems doom & gloom! The whole Covid situation makes it so much harder doesn’t it and you feel like you are putting your trust in people you don’t know properly but I also only met my surgeons the day before surgery and I hope when you see them they are as thorough as mine were. They’re the experts remember😁 just stay safe in the hospital.

Oh it’s honestly so awful, I really feel for you and hope it improves with time. Yes I had the retrosigmoid approach but believe they are fairly similar?

Aww I’m sure time will fly by after you’ve had the op x best wishes

Check my other post?..I've had mine 40 years cud was told was dangerous op...I've lived with it so long as u can keep urself occupied it seems not to bother me, but tinitus is always there..end if day ur decision, I made mine and still here at 74 Years..mine was 2cm also..was 34 when mine was diagnosed.

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