Joining community

Hi Sophie,

Thank you for your reply, that is also another argument of mine, I've had a few surgeries now in other parts of my body and have always healed brilliantly with minimal scarring, why leave something growing in my brain which could have potentially nasty cells lurking inside giving it chance to change and start infiltrating my brain. I am still what I would class as very young (hopefully ppl will agree with 33 still being young) and so why not get it out now whilst it is its own lump and my healing process should be a lot quicker due to my age. I know it's an extremely risky operation and I appreciate the risks and possible complications, but medicine has comes hell of a long way in the last 20 - 30 years and they have all means to keep us alive. I feel like I'm stuck in limbo land again, life put on hold because of not knowing.

I was so confident and outgoing at 23 before the cancer, since then my confidence has been shattered and I'm just a shell of what I used to be.

How are you feeling after your brain surgery? Did it take long to recover? Also where was your acoustic neuroma situated?

I hope you don't mind me asking and hope you are doing brilliantly!!

Sam xx

Well, it's good that he didn't have to dissect that side of your neck too! I had to have open heart surgery before my first RAI because I had ectopic thyroid growth on it. I'm all sorts of special, and not in a good way. Lol

I think I'm on a watch and wait. The neurosurgeon never actually got back to me after the last scan - and all calls haven't been returned. This is from October last year. I asked my endocrinologist, and he was able to see an internal letter that said there had been no change, so I just left it at that. I've just been told that if the headaches and limb weakness get bad, then there are some pills I can ask my GP for.

But I know what you mean about the 'what ifs', because with mine - it's right on the edge. So why don't they just go in there and whip it out? Cause what if it's cancer? What if it's like a little time bomb? All totally normal and natural thoughts for anyone in a situation like ours.

Brain surgery is definitely one to think long and hard about though, as it is a big op - especially as you say because of the position of yours. As you say though, medicine has come a long way. Your eczema for example could be contained by a barrier cream, and just making sure the wound is kept clean regularly. So I'd not be too worried about that issue. 

But as I say, all your worries are perfectly natural. Though I'd maybe try to take a little comfort in the fact the doctors aren't rushing anything. So they aren't too worried about what it might be up to in there. They've weighed it up, and for now think it's safer to you to leave it in than to take it out.

Feel free to reach out anytime you want to talk. That's what we're here for.

Take care of yourself, and give those kids of yours a big smooshy cuddle! 

Lass

Xxx

Hi yeah that's one of my questions this time around, I'm confident he's got it covered but always good to ask, did you get yours removed? How are you doing now? 

Laura

Me? Nope. Neurosurgeon is still dodging my calls. Lol

Hey sad Sam 

hope your not too sad now. 
how are you doing with the subEpendymoma? 

Scared sarah