GK/CK radiotherapy

[Alison_L]

Hi all. I was diagnosed with a 1cm AN following an MRI in February. I had the follow up MRI last month which showed it’s now got a cyst on it and is 1.5cm. I’m being referred to Royal Marsden for GK/CK. Any suggestions as to how I can prepare for this, please?

[Kristyll]

I had surgery so cannot advise, however wish you well with your treatment

[Alison_L in reply to Kristyll]

Thanks, Kristyll 😀

[Bizzyhazel]

hi Alison

I also had surgery 2 aug this year . At Salford .

Unable to remove all the AN .

Make sure you carry on as normal as possible . Your specialist nurse will be able to answer questions too .

Keep positive and happy

[Alison_L in reply to Bizzyhazel]

Thanks, Bizzyhazel, I’ll try! 😀

[flappers]

Hi Alison, I had 19.5 grays of SRS delivered in three sessions due to size (2.5cm) and position at Guys hospital (I think they use the same machines as Marsden) in June this year. If you pop to the Brains trust website there is a blog and a video of the machine etc, with me talking about my experience and what I found helpful in terms of preparation. I hope it helps. Above all, focus on relaxation and stress relief for yourself, the actual treatment is a breeze! brainstrust.org.uk/patient-... I hope all goes well for you, let us know how you get on. Lin

[Alison_L in reply to flappers]

Thanks, Lin, I’ll have a look at that 😬

[Happy-Singer]

Hi Alison, I had gamma knife surgery at Sheffield last November but mine was not complicated by a cyst.

You don't say whether you having surgery.

At the time of surgery my AN was 1.1cm which I was told is tiny however my symptoms started with intermittent hearing loss, tinnitus and balance/dizziness issues.

A year on and my symptoms are no better, in fact I feel they are worse. I am told it takes up to 18 months to get any benefit from this treatment.

I have brain fog, lack of concentration and memory is not very good. I have now decided to retire from work, but then I will be 66 next month.

When I had an MRI a couple of months ago I was told it hadn't growth, which is great, but not shrunk either!!

Don't know whether this helps. Xx

[Alison_L in reply to Happy-Singer]

Hi Happy-Singer. No actual surgery is planned at the moment, unless you mean GK “surgery”, which is what I’ve been referred for. If that doesn’t work then proper surgery will be the next step.

The problem is that I don’t feel ill at the moment, but I’m afraid that GK will make things worse.

[Happy-Singer in reply to Alison_L]

Good look with everything and hope everything is successful for you. Xx

[Alison_L in reply to Happy-Singer]

Thank you xx

[Rupert25]

Hi Alison yours is only half the size of mine so don’t worry too much. The cysts do develop apparently as the cells that have been zapped by the radiotherapy can no longer divide but take on liquid and swell- almost like a blister does I imagine. My radiotherapy was in the Summer of 2019. My Schwannoma continued to increase in size but my last MRI in March (2022) showed it was beginning to stabilise so hopefully my next MRI (March 2023) will reflect the same pattern. I am practically deaf on my left hand side, have constant tinnitus which I have learned to live with, I have numbness on the left side of my face and tiredness but that may be age or my chronic insomnia issues. No headaches and balance is fine but avoid some gym activities which involve jumping up and down. I consider myself very luck as it’s all manageable so far. Good luck and keep positive!

[Alison_L in reply to Rupert25]

Thank you for your reply, Rupert. Was the facial numbness caused by the VS or the radiotherapy? I haven’t been zapped yet, so I don’t know what caused the cyst!

[Rupert25 in reply to Alison_L]

Sorry Alison I misunderstood and thought you had undergone radiotherapy. The schwannoma has grown in my brain stem on the hearing, balance and facial nerves so that’s where the numbness has come from rather than the radiotherapy. If your schwannoma is small enough they may well operate and remove it. Cystic schwannomas are apparently quite common but I don’t know the cause. Mine was 2.4 cms when I first presented so if they operated they would have had to cut the facial, balance and hearing nerves completely- I wasn’t prepared for that. I did 6 weeks of daily (weekdays) radiotherapy at Addenbrooke’s- wonderful hospital.

Keep in touch if you want to ask more

[Alison_L in reply to Rupert25]

Thanks, Rupert. The neurosurgeon at St George’s thinks radiotherapy is the better option at the moment, but if that fails then he’ll go for surgery.

[Rupert25]

Keep in touch Alison - I would opt for radiotherapy every time over invasive surgery and if it fails then the surgery option is still there. Best Wishes

[Rudangeo]

hi Alison I had the Cyberknife in June this year for VS I found wearing the mask a little clostrophobic but mine treatment was 10 mins for 3 days which is nothing really I just thought about what colour to paint my bedroom to take my thoughts elsewhere. They explain everything to you I had my treatment at Bart's and they were excellent. I hope this helps ,

[Alison_L in reply to Rudangeo]

Thanks, Rudangeo. Do you feel ok 4 months later?

[Rudangeo in reply to Alison_L]

At the moment I'm having a bout of dizzy/giddiness which I presume is part of the symptoms. I get tired and I now believe could be part of this . I have lost most of my hearing in that ear . But otherwise ok

[Rudangeo]

hi forgot to say mine is or was 13mm I think surgery would be a last resort

[Alison_L in reply to Rudangeo]

Because mine has grown so quickly, the surgeon offered either as equal options, but because of my circumstances (I’m the main carer for my 94yo mum), he thought radiotherapy might be better at the moment.

[shouie]

I had SRS / GK early January 2021.

The whole procedure for me was quick around 20 mins and totally painless.

Actually the mask fitting I found was the most uncomfortable part.

Regarding preparing just remain claim, think of pleasent relaxing things, like where to go on holiday etc.

But rest assured the procedure is quick and painless.

I'm 21 months on now, I've just had my 2nd MRI with contrast following the procedure.

1st scan showed slight increase in size, 2nd has shown its stablelised (according to my specialist nurse) but im awaiting full official details from my neurosurgeon.

I'll update the group when I hear back...

Regarding symptoms, nothinghas really changed for me. Limited hearing in the left ear, constant tinnitus but face and balance are ok.

But I've excepted that I'll probably have this for the rest of my life and I'm pretty Zen about that.

Stay cool and good luck.

[Alison_L in reply to shouie]

Oh shouie, thank you for that positive post. I’m resigned to the tinnitus and loss of hearing, but am terrified of face & balance problems.

[flappers in reply to Alison_L]

just to say Alison that I am fairly sure, whilst radiotherapy most likely cannot get rid of the symptoms you already have, any new symptoms are likely to be temporary due to a bit of reactive swelling which be calmed by steroids if needed, or time, and hopefully settle. I have only had a couple of irritating extra things after radiotherapy, such as a clampy feeling type headache and stiff neck and uncomfortable feeling behind the ear.. mostly things that are relieved by being extra kind to myself. My number one tip is stay extra hydrated and rest before you start feeling discombobulated, even if it’s 10 mins with you eyes closed, after treatment. My face and balance are absolutely fine and tinnitus and hearing loss are the same. I was worried about the same things x

[Alison_L in reply to flappers]

Thank you flappers, it’s good to have some reassurance that things can be normal (or new normal) x

[flappers in reply to Alison_L]

I’ve just come back from a dance music festival in Spain where my husband DJs at, and planning a month in Thailand in February. Life definitely goes on! 💋💐

[Busyrobyn]

Hi Alison ,

I had GK ,at Sheffield in 2014,I was 79.

6 months later I developed vertigo which was most unpleasant.I still have some balance issues and in common with many AN folk I don't see well in the dark.(We use our eyes and brain to balance compensating for acoustic nerve damage).I manage well with a Bi cros hearing aid ,like many other I have a woolly head at times.It comes and goes 8 years on.

I have been discharged by Addenbrookes.Now aged 87,GK was a success for me.Good luck.



.

[Alison_L in reply to Busyrobyn]

Thanks Busyrobyn, good to hear it was a success. Hearing is the next thing I’ll worry about, the standard aid for my bad ear is worse than useless. Audiology don’t seem to understand that increasing the volume of my distorted hearing doesn’t actually help!

[Busyrobyn in reply to Alison_L]

Alion,You are so right.My local audiologist actually said why not try an ordinary aid in that ear.Yes ,it does hear some scrambled sound but my, damaged acoustic nerve can't make any sense of it.I expected an audiologist to realise that but I had to explain to him.

[levelslass]

Hi Alison I was treated for 2.8cm AN at Royal Marsden in 2005 by Prof. Brada and and ahis team All is well since then. How to prepare. Depends whether you are staying at their hostel or going in every day. I srayed in the hostel as I came up from Somerset. They have Cyber knife now which was only available in USA when I was there. I had Fractionated Stereotactic Radiotherapy with a Linac machine. You will be in very, very good hands. So I would say don't worry. Take a book with you when you go to your radiotherapy and outpatient sessions. And your MRI scans. You will have a canula in your hand for your scans so contrast can be administered. All the staff are so lovely. If you find the radiotherapy starts to make you feel sick after a few sessions, you can have steroids but they do increase your appetite and blow you up. So avoid if possible. Good luck.

[Alison_L in reply to levelslass]

Some sensible ideas there. Thanks levelslass. I'm only 6 miles from the Sutton branch of Marsden, so I don't think there'll be any question of staying