Anyone had or know someone who has had Stereotactic Radiosurgery ?

[magicmummy]

Mum has been diagnosed with a brain tumour - this treatment is an option for her.
Any info please ?

I'm very sorry to hear your news magicmummy. My mother had this treatment several times at Charing Cross, and it was successful every time (she has had loads of brain tumours - metastases from lung cancer). It was swift (in and out in under an hour I think) and she didn't have any major after-effects - tired for a few days, but nothing more (well, your hair falls out and you have sore spots on the skin where the rays enter the brain).

For Mam, the worst bit was being completely immobilized, which is necessary to make sure that they can target the beam with absolute precision - they make a plastic mask of the patient's face, which is really skin-tight, place it over the face and then screw the mask to the treatment table. That bit's not nice I think.

Let me know if you have any more questions. I hope your mother does well.

sorry to hear this.
my DH steve has a brain tumour and has had radio and chemo. he had radio for six weeks monday to friday and chemo everyday for six weeks.
do you know what type of tumour your mum has?
i will answer any questions if i possibly can

They have said it could be a schwannoma or a meningioma or possibly a metastases. The tumour is attached to the trigeminal nerve. The right hand side of mums face has gone numb.
Mum had an MRI scan, x-rays and blood tests in August. A follow up appt was made for 31st Oct. No-one contacted her in the meantime with any results, so we assumed everything must be ok.
At the appt on 31st Oct, consultant saif x-rays and bloods were fine (no mention of MRI). Mum asked about MRI results, consultant said he didn't have them so someone was sent to look for them. Consultant looked at them and just said, oh yes, you have a brain tumour. This was 10 weeks after the MRI scan.
Eventually with a struggle we got another MRI scan for Mum to see if there had been any growth. Got a referral to HRI to see consultant on 23rd Nov (don't deal with this locally). Consultant referred Mum to Sheffield Gamma Knife Centre. They forgot to send scans on disc so referral was delayed. We were then told she might not be seen at Sheffield until late Jan/early Feb. After alot of phone calls, we got a cancellation appt on 12th Dec. Mum has been advised to have this treatment otherwise the tumour will continue to grow and eventually kill her (this is how it was put to us). Now being told it is non-urgent (??) and that she may not get treatment until March/April/May.
I don't get how a brain tumour can ever be classed as non-urgent. It is obviously active as it it causing the numbness to Mums face and also pressure behind her eye.
Am at a loss as to where we go from here.
Do we wait ? Do we push to be seen quicker ?
Mum is having some really bad days and some good days. I'm the only daughter that lives close by (older sister is 220 miles away and younger sister lives in KeyWest).
Any help or advice would be appreciated.

We were told about the frame that would be screwed to mums skull in order to target the beams to the exact location - but no-one has mentioned a mask.
They also said her hair wouldn't fall out.
They have said that she would be in for 2 nights.

is this the surgery where they insert a chemo wafer into the tumour?
i have found the brain tumour forum very useful thou most people on there have glioblastoma multiforme grade 4 which is sadly terminal, they might be able to help you thou
Here

Nothing gets inserted into the tumour - AFAIK
This is their website www.shef.ac.uk/~ns/

Will have a look at forum you suggested.
Thank You

i have heard good things about the gamma knife at sheffield. so i think she will be in excellent hands

I think it's the wait that's getting to Mum. The whole process seems to have taken SO long.
10 weeks to find out she had a brain tumour.
3 weeks for another MRI.
3 weeks to see Consultant in Hull (would have been longer but got a cancellation appt)
3 weeks to see different Consultant in Sheffield (again, would have been longer but got a cancellation appt)
And now could be a 4+ months wait before any treatment.

the waiting is a nightmare
Steve was told he had MS and a brain tumour in Jan but they said slow growing so not likely to be cancer he should of had a 3 month scan that took six months and in july he had surgery and in august we were told its the worst kind of brain tumour and can't be cured
it makes me angry that people have to wait so long.

Gamma knife and stereotactic are two different procedures I think (my mother has had both)! I'm sorry to hear about your experiences, it sounds as though your mum has been horribly messed about.

Yes, re-reading your post it sounds as though you're describing gamma knife. My mother had it done at the Cromwell in London. She actually experienced quite significant after-effects - very tired, some deterioration in her condition before it started to improve very slowly again - but she was having several tumours done, so I don't know whether that makes a difference.

OJ We've been told this is a very rare type of tumour. The treatment should stop it growing but won't get rid of it.
How is Steve now ?

HW We have been told that her symptoms will get worse and they may or may not disappear completely. She may also get double vison due to treatment.

HW How is your mum now ? We were also told that a 2nd lot of treatment wouldn't be advisable (if 1st one doesn't work)

It's all very confusing. Different info from different sources. Not knowing who to believe or what to do.
Have to remain positive for Mum.
Even trying to get 1 day off from work to attend appt's with Mum is a nightmare. You would hope employers would understand.

magic, mam is quite unwell now, sadly. She did have a second round of treatment, but now she has too many brain tumours to treat (more than 30). However, hers are secondary to lung cancer, so hopefully this isn't any sort of indication of how things will go for your mum.

I think the consultant was right about the symptoms getting worse in the short term - that was certainly the case for mam. It is a very full-on treatment - mam's consultant kept emphasizing that it is brain surgery, albeit without actually opening up the skull, and it does take months to recover.

It sounds as though your mum has one (large-ish?) tumour, whereas my mother has multiple small tumours. Maybe your mum's doctors are hoping that they can knock her tumour out by whacking it with as much radiation as she can take, and possibly that's why they wouldn't advise a second round - too much radiation can cause brain damage in itself.

this is the website of the place where my mother had her treatment - it has some useful info.

It sounds tough on you and your mum - is it just the two of you attending appointments? Do you take a notebook to write down what is said? Otherwise the information can become overwhelming, especially when you're already stressed and frightened. Also, you can call the consultant's secretary and ask for a telephone appointment if you think of further questions once you're out of the room - it's a lot to take in.

Sorry your mum isn't too well at the moment.
Mum and I have been attending appointments together. I always take a notepad to write down what's been said - like you say, there's so much to take in.

A meningioma is a benign, i.e. non-cancerous, tumour of the membrane covering the brain. It is slow growing and once treated (as long as they get all of it) should not recurr and will not spread elsewhere. If they can't get all of it because of the therapy affecting adjacent parts then it can continue to grow, but slowly, and it can be treated again.

Hopefully this is what your Mum has if they are not too concerned about waiting a couple of months before treatment, but it may be worth you contacting the consultants secretary and asking for further information as you are not entirely sure of the diagnosis and prognosis.

If they think it is a metastasis they will send your Mum for further tests to find the primary (source) tumour and this will deermine what treatment she has.

Hope everything goes well and you get the answers you need.

How's ur mum magic mummy. Has she undergone radiotherapy? My sister was diagnosed with a schwomma brain tumour 2 years ago, she is only 29 with three children. It has now grown to the side it needs treating urgently and they have recommended stereotactic radiotherapy. Hope to hear from you xx