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Scared about brain surgery

(48 Posts)
SauvignonBlanche Tue 07-Jan-14 20:25:48

Have had a benign Grade 1 tumour for over 20 years and have no current symptoms.
Had what I thought was a check-up today after a recent scan and was told I need surgery!
I don't want it and am frankly, terrified!

WakeyTryingAgain Tue 07-Jan-14 22:10:36

I don't want this to go unanswered. I have absolutely no experience of this, I cried through an MRI scan of my head because it terrified me so I think you'd be mad not to be scared.
Are they giving you an option or is it just something that definitely has to be done?

minmooch Tue 07-Jan-14 23:05:30

I'm not surprised you are scared. Why do they suddenly think it needs operating on? Was the recent MRI just routine? You have every right to say no to treatment if you really do not want it but I think you need further discussions with your consultant to find out if this is your only option.

I hope you get some clarity soon.

SauvignonBlanche Wed 08-Jan-14 17:43:51

Thank you, for not leaving me unanswered! thanks
I did get a bit argumentative asking why on earth you would operate on someone with no symptoms? They explained that the tumour will continue to grow, albeit slowly, until I do have symptoms.
If I was older, they'd leave it alone.

tunnocksteacake Wed 08-Jan-14 18:01:25

Message withdrawn at poster's request.

Matildathecat Wed 08-Jan-14 18:08:19

If you feel unsure, (and who wouldn't) it's perfectly acceptable to ask for a second opinion.

Are you at a major centre of excellence? It's where I would prefer to be in this instance.

Really sorry, it sounds very scary indeed. Hope you have lots of support in RL.

SauvignonBlanche Wed 08-Jan-14 18:19:18

Sorry to hear that tunnocks, I appreciate that things could be 1000 times worse and feel a bit guilty for being a bit pathetic as have a couple of family members undergoing 'proper' cancer treatment.

I'm definitely at a regional centre of excellence matilda, when I was told I needed a couple more scans I asked where, initially hoping it would be at my local hospital but was told no, it would all be at the Neurosurgical unit. On reflection, I'm pleased everything will be there even though its a bit of a trek from home (relatively).

tunnocksteacake Wed 08-Jan-14 22:29:48

Message withdrawn at poster's request.

HairyPotter Wed 08-Jan-14 22:49:48

Has your tumour been growing slowly until now? It must have been a terrible shock to hear you will need surgery. I know very little about brain tumours but what difference does your age make?

My dh was diagnosed with a brain tumour in February last year and they have told us that is likely to be slow growing. He is due another MRI next month and depending in the results he may need surgery too. sad Tunnochs I have been following your thread from the start and I hope that your dh is on the long road to recovery. I'm shocked to hear that you can't drive for two years though? Was that because his surgery was so invasive or is it for any brain surgery? My dh would lose his job if be couldn't drive sad

Sorry for hijack Sav I hope you get some answers very soon. <hugs>

HairyPotter Wed 08-Jan-14 22:51:05

Mortified to spell Tunnocks wrong! I stay about 20 mins from factory and dh works there on the odd occasion. Sorry blush

Thymeout Thu 09-Jan-14 07:53:52

I know someone slightly further down the line than you. She has an epithelial tumour which started before she was born. Now, aged 32, she is beginning to develop symptoms (weakness in arm and leg, vision disturbance), which, even with the operation, won't be reversed. But if she doesn't have the tumour removed, it will eventually have potentially fatal effects - inability to swallow, etc.

She has been told that in a similar case, with someone older and with other health problems where they could not operate, the patient was in a wheelchair within two years.

The sooner they operate, before symptoms develop, the better the chances of being able to remove the tumour completely.

She, like you, is terrified. But putting it off really isn't an option. Have you asked for a second opinion? That might reassure you, even if the answer is the same. As others have said, although the idea is scary, recovery time is quicker than other, less scary, ops and the fact that it is benign is a huge blessing.

SauvignonBlanche Thu 09-Jan-14 17:29:50

I'd have to leave my job if I couldn't drive! shock That'll be the first thing I ask about.
I have epilepsy but have been seizure-free for 10 years and have no restrictions on my licence at present.

Reinette Thu 09-Jan-14 20:50:10

Thinking of you SauvignonBlanche. I had a benign tumor removed 4 years ago and was told it wouldn't grow back but alas, here it is again and growing quite aggressively (although I also have no symptoms yet). My surgery is on the 27th and like you I'm absolutely terrified - despite having done this once before! All I can say is neurosurgeons really do remarkable work, and for the past four years I've been healthy, active, and symptom-free with no neurological deficits; I'm sure you'll have a similarly easy recovery and will be back to normal in no time. (And definitely do ask about driving, but I had no restrictions on my license after my first surgery.) Good luck and please let us know how you're doing.

SauvignonBlanche Thu 09-Jan-14 20:58:09

Thanks Reinette, sorry to hear you've got to go through it again! shock
I'll be thinking of you on the 27th, I'm back at the Neuro Centre for another MRI and a CTA on the 28th.

SauvignonBlanche Thu 23-Jan-14 18:34:18

I feels like a lifetime, since my last post, the waiting is awful!

GoodnessKnows Thu 23-Jan-14 19:42:26

I'm reading. I'm working at mo and then going out. Will continue when home.

GoodnessKnows Thu 23-Jan-14 22:53:47

As you know, I have recently been told I too have a slow growing 5.1cm tumour that has done considerable damage (chronic bone erosion in my spine). I've no choice either. Op is on Tuesday and I find it so hard to comprehend and face willingly. But we can do it together, Sauvignon.
My mum had a tumour taken from her pituitary gland. Beth ode to the brain.
It was successful and she'd not be here now if she had t faced it - and we are all so glad that she did.
You can do this. Maybe not emotionally. But physically. I do know how scary this is. Even the MRI on the head and neck (whole body) made me a bit teary. I shook and shivered violently when going under general for the biopsy (inconclusive) there weeks ago. I do know. I do understand. I think I do, anyway. I'm holding your hand so climb out of that lonely, dark hole, lady! Grab a sense of humour like they're life rafts (when you're not crying / 'coping', lose it at men who block hospital entrances (as I have) and call those people you'd like to be caring about you even of you think they don't care. Don't let that he swallow you. Don't be alone on ANY way.

GoodnessKnows Thu 23-Jan-14 22:56:48

And ignore the typos. Lol
Out of that dark hole. Grab every hand offered. Make a list of people to call to actually speak to when u burst out crying and are scared.

GoodnessKnows Fri 24-Jan-14 07:35:26

Do you have an op date?

SauvignonBlanche Fri 24-Jan-14 18:05:17

I'll be thinking of you on Tuesday, I'll be having an angiogram and an MRI.
I see the consultant next Tuesday and I guess may get an Op date then.

GoodnessKnows Fri 24-Jan-14 21:27:28

Whole body MRI?
Take a CD and get them to whap the volume up if you can
No experience of an angiogram. Is it Uncomfy?
Is it harder or easier being a nurse?
Being a parent, having been a teacher for 20 years, is hard!

GoodnessKnows Fri 24-Jan-14 21:28:30

Apparently, the waiting is the worst. I'll let u know about that! Lol
Grab onto a sense of humour (you'll find one even though you're scared shitless! Use it as a life saving raft.

GoodnessKnows Sat 25-Jan-14 07:13:56

How are you doing today? Did you get done sleep?

SauvignonBlanche Sat 25-Jan-14 17:48:55

Sleep is a bit hit and miss at the moment, as I'm sure it is with you. The wee small hours are the worst for worry, aren't they?

Just a brain MRI for me, an angiogram used to be very uncomfortable, as the contrast dye was injected into your femoral artery. I had one 20 years ago and it was horrible!

Things have clearly moved on as the dye is just given intravenously now then into a CT scanner which is much nicer than an MRI.

Nurses, and doctors generally make terrible patients, they know too much! grin

GoodnessKnows Sat 25-Jan-14 18:14:46

I'm sure. I'm an awful parent now that I'm not in the class teacher role. Lol
Glad the angiogram was better. Night times are awful. Get better though. I've had to wait with full knowledge of impending (doom) operation since December 11. Op is this Tuesday 28 January. It was awful in beginning. Recently I have been sleeping better. Getting the op date was helpful as so much free floating anxiety. I'm prone to anxiety n control anyway. Lol
(Not really laughing).
Do you have a date yet?

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