I have got Tinatus in my ear no other symptoms but the AccustiTumour has grown in last 2 years advised Radiation worried about side effects

[Waiting]

The Tumour grown very little went for mask at QE Birmingham yesterday Friday 13th June 2014 I almost had pannick attack I am wondering if I will be able to last out I hour radiation treatment. Worried by all the side affects I can get when I feel ok now. Can some one who as had treatment speak to me. I have been told will not know for 2 years if stopped growing.

[Kristyll]

many people with acoustic neuroma, which ever treatment they choose suffer tinnitus. If the mask is causing you to feel claustrophobic I am sure they may be able to give you some mild medication to see you through the procedure. Please ask them and good luck

[Waiting in reply to Kristyll]

Thank you for replying I already have tinnitus the only thing I suffer from so nervous that by having the Cyber Knife treatment I may be causing myself all sorts of problems. I also panncked when I had my C.T. scan with the hardened mask on, my teeth pressed into my lip how I wil be for 1 hour treatment but I will take your advice. Thanks.

[Njd59]

Hi, there! I had Gammaknife radiosurgery in Sheffield a month ago, and how you are feeling is very common and understandable. I got my head straight and my nerves under control by reminding myself that the side effects of the radiation treatment are tiny, the recovery time ridiculously quick, the success rate is awesome (96%) . I found myself just being really grateful to be having the radiosurgery, and the options of having a traditional operation or leaving the tumour to grow so big it causes mega damage became unthinkable. Practical tips are: choose some relaxing music that helps you breathe slowly, and practise lying still and listening to it at home. I kept my eyes closed so I wouldn't keep thinking about how I couldn't move my head and how enclosed I was. Keep counting your blessings and the panicky feelings should subside. All the best for a successful procedure!

[Waiting in reply to Njd59]

Thank you will take your advice thinking of having a storey CD. I have been given Steroids to take before and after Cyber Knife because of Tumour swelling all the possible side affects worry me as the only thing I suffer with now is Tinnatus and the Tumour is still small I have been having scans every year but because there as been growth the last 2 years they decided to take action. Why did they decided to take action with you ? Thank you again.

[Njd59 in reply to Waiting]

Hello again. My AN was identified 2 years ago, when I finally noticed I couldn't hear ear and had hissing in my right! Not very self-aware. I've been on a Watching Wait programme since then, and was fine if I called it a "lump in my ear" but wobbly if I called it a tumour. The MRI scan last September showed it was growing, so Gammaknife was suggested. Hope you don't live in Wales as I do, because my appointment and treatment were cancelled when they realised I lived here, even though I'd had scans and consultations in Birmingham throughout. Grrrr! My Polyanna attitude is to trust the doctors, and expect the best outcome, unless there's evidence to the contrary.

[Waiting in reply to Njd59]

Thank you for replying where do you have to go now for scans ect I live 2hrs away from Birmingham it is a long trip but told they have the most up to date equipment than local hospitals and I have been treated well just a lot to take it all in. Brenda

[Njd59 in reply to Waiting]

Hi Brenda, we live in Mid-Wales, which is about 2 hrs from Birmingham, and 3 from Cardiff where I'll be going from now on for scans etc. I'm quite happy to travel to have the best treatment and doctors. I think it's a lot to take in for everyone, it's amazing to be having brain surgery in effect. We are so fortunate to be living in a part of the world with such amazing health treatment. Nicky

[Kristyll]

good luck with it

[mrwhite]

I've had Cyberknife at the QE and While it isn't comfortable wearing the mask for an extended period, it isn't painful.

While there are risks with every treatment this option gives you the chance to try and keep your AN side effects as they are now and no worse. That's not guaranteed, but with surgery you near certainly will have additional issues to deal with, even if some are only temporary.

You may feel a litle tired after, that's normal, just take things easy and build yourself back up to speed at your own pace. If get headaches, ask your GP for painkillers or nerve relaxants to see if they help.

Regarding the day itself, have you looked around the ck suite? It's very relaxing I can post a panoramic video link if that helps. The staff are very friendly and helpful.

Do you normally have panic attacks or was this the first time?

Speak to your GP before the day and explain your anxiety and apprehension. They will be able to offer advice and maybe some relaxants. It's normal to feel a little worried if you don't want to take medication try herbal relaxants - worked for me - I'll get the link if you want to the ones I used.

Just think of it as positively as you can as it seems your worries about the unknown are what are causing the panic. Knowing what I was walking in to literally (the room and machine) and information wise (knowing risks are small, it's for greater longterm good) meant i was able to make peace with the situation, take control of it and not feel like it was controlling me.

Make a few CDs of your favourite songs a bring with you for the staff to play in to the room.

When in there close your eyes, don't try and look about. Stay still and focus on the music and try and slow your breathing down taking slow long breaths, counting to five as your breath in, hold for 2, while counting to five as you exhale. Pause for 1, the start again breathing in while counting to five again etc. Try practicing at night in bed with your eyes closed, before you go in so it's easier on the day.

Are you going by yourself or is someone going with you, ? even though I only live 5 mins from the hospital and have been to all other appointments by me self the whole time, I had someone come to drive me home as you will feel emotionally and physically tired after so it's good to have someone else drive!

Finally good luck, you're very strong getting this far and after will wonder what all the worry was about.

If you're not a members of BANa you may wish to consider joining, and have access to a blog I've written on my treatment journey as well as the past success stories of other people who have had CK , GK and surgery as well as a good place to seek other information help. And support.

PS don't forget to ask to take your mask home as a souvenir, mine now hangs on the wall in a room, as an achievement trophy! I own it - it doesnt own me. Try and think the same.

[Waiting in reply to mrwhite]

Thank you very helpful I have joined BANA Thanks again Brenda

[bypass]

Cyber-knife treatment has about the lowest incidence of side effects of any treatment for acoustic neuroma so please don't worry about that. I had a slightly different radio-surgery as CK had not been introduced in 1998 when I was treated, but I can tell you that the treatment time flies by faster than you might expect. You should be able to cope with the mask (which after all you can see through) by closing your eyes and imagining yourself somewhere you would really love to be. A friend of mine actually went to sleep in a noisy MRI machine by doing this. Yes, it will be a couple of year before you can be certain it has worked. However there are two things to remember here - (1) it only fails in 2 cases in every 100 treatments and (2) the failure rate for surgery or any other treatment is at least as great and you still have to wait two years or more to find out! In short you have been offered the very best treatment available in the UK at present, one which many others are fighting to be allowed to have. Grab it with both hands. you'll be fine.

[Waiting in reply to bypass]

Thank you for putting my mind at rest I have been dealt with very well at Birmingham it is just nerves and worry of the unknown. I too visualise that I am on a beach and have nearly fallen asleep in the MIR machine hope I can do the same with the Cyber Knife wearing the mask. Thanks again Brenda.

[mrwhite]

Glad you feel more at ease.

Here is a link to my treatment, which has some pics and video view of the treatment room

bana-uk.com/index.php?optio...

If you do go to your gp, maybe also ask for some thing to settle your stomach, I and a few others found the steroids can make you feel a little funny,

[Junedoreen]

Hi, I will be having Cyberknife at the QE myself in a few weeks. I had surgery last August but my tumour was so big and attached the brain stem, that they think a blast of radiotherapy is a good idea to shrink what I have left. I had some side effects after the operation so I'm hoping that lightening doesn't strike twice!! Perhaps we can get through this together - I have found BANA very supportive and am now on a steering group helping to arrange the AGM so looking forward to the tour of the CK unit, although I'm hoping to have been zapped by then. All the best and I'm positive everything will be OK, they know what they are doing at the QE.

[Waiting]

Good Morning every one well I had my 'CYBER KNIFE RADIOTHERAPY', at QE, for my Acoustic Neuroma Friday and to my relief I am fine the treatment was shorter than I hour because I did not move and the machine did not have to stop and start. The mask was a lot more comfortable than the fitting when it was tight on my lips. Took on board every ones advice breathing, relaxing music, Muscle relaxant from GP, posative attitude all went well. Felt a little shacky afterwards just wanted to get home, but all good had good nights sleep, warned I may have headaches so far I have not so all is good just taking things easy as advised for a week to ten days. Best of luck if you have not had your treatment yet, will keep you posted.