Yay or nay to more surgery?

azezil

2 years ago I had an operation to remove a brain tumor, they got about 90% of it and thankfully it was benign. Since then I've been getting regular checkups, MRIs etc. and it hasn't changed at all.

About a year after the operation (most likely less but I only became aware of it about 1 year after) I started have seizures, they started in my sleep and progressed to my waking state also. They then informed me I have epilepsy and put me on anti-seizure medication. Eventually they got a dosage that works.

So right now, apart from having to take a large dosage of Keppra twice a day I'm pretty much fine.

My surgeon wants to go back in and remove as much of the tumor now, while I'm young (30) instead of waiting till I get older. His logic behind it is, the more they remove now the lesser the chance / amount that can possibly turn malignant in the future. Which sounds reasonable to me. Others however say we should 'wait and see'.

I find myself thorn, I was all in favor of having more surgery when all this started but now that the meds finally work I find I'm more hesitant. I didn't have epilepsy before so it was most likely a result of scaring from the last surgery, who's to say it won't be worse if they go in again? With any operation there are risks, I just can't decide what to do so I'm looking for and asking advise from anyone and everyone.

Has anyone had a similar experience, or have even any general advise for me?

CathyMoran

Azezil - this is just my personal opinion but I think that the surgery is the way forward, the idea of waiting to see if something turns really nasty is not my idea of fun - yes, it is scary but I am not sure if you even have a choice. I wish you all the best.

mickman

i would get as much of it taken out immediately

Mr. Loverman

I'm really sorry to hear about your situation.

Can the doctor provide statistics of the recovery rate/etc. of people who have the surgery early or those who take a wait and see approach?

I would base my decision on those statistics.

If he cannot provide statistics I would find a different consultant.

azezil

Was just checking my subscribed threads when I came across this so I'll give it a wee update.

As it turns out the decision was made for me. Late last year I my symptoms got a lot worse, starting seeing auras, increased headaches, tiredness, slight loss of power to my right side at random intervals, not being able to breathe (that was fun O_O), increase in severity of seizures even on my high dosage of Keppra. All that kind of fun stuff!

They operated on Monday December 13th and released the following Friday. I didn't have to go to ICU at all this time round; in fact I felt very little pain after surgery... for about 10 days, that's when the pain finally caught up with me. But it wasn't as bad as the first surgery so that was all gravy.

The tumour was highly vascular in nature, was a whole lot of leakage going on in there so the surgery went on a couple of hours longer than expected. Due to the tumours new location, it was putting pressure on my ventricle system, my surgeon removed as much as he could and since the start of March I've been receiving radiotherapy, just 2 more sessions to go.

Tumour is still benign, was hoping to escape the radiotherapy but turns out it's actually not bad at all. Though I do freakin hate not having hair and having to wear a hat on these sunny days

CathyMoran

Good to hear from you - sure the hair will grow back in no time, you know that it is getting long when you need a hair cut!

tbh

Delighted to hear that, I've been wondering how you're getting on. Keep the pecker up!

azezil

tbh wrote: »

Delighted to hear that, I've been wondering how you're getting on. Keep the pecker up!

*grin* not a problem :pac:

MASTER...of the bra

I didn't know benign tumours could turn malignant. Learn something new everyday.

Fingers crossed that's the end of it after the radiotherapy.:)

randylonghorn

azezil wrote: »

*grin* not a problem :pac:

I could make a really bad joke about that being the kind of swelling that doesn't worry you!

Be well, Az!

azezil

MASTER...of the bra wrote: »

I didn't know benign tumours could turn malignant. Learn something new everyday.

Fingers crossed that's the end of it after the radiotherapy.:)

They can indeed but mine hasn't yet and hopefully won't. But benign tumours can and do grow, albeit far slower. Mine is a low grade glioma, it can only spread through my brain and nervous system so unless it turns malignant my other organs are safe.

KittyeeTrix

Glad to hear you are doing well OP.............Sometimes it's easier if the decision is taken away from us if ya get me:)

azezil

They mixed up last week with my finishing date, they thought it was last Monday but it was actually today, I got to keep the mask. ^_^

azezil

I wrote a blog about my experiences.
http://azezil.wordpress.com/2011/04/15/glioma/

CathyMoran

I just read that there - fair dues to you and best wishes - more awareness of these conditions is essential - wishing you all the best.

tbh

CathyMoran wrote: »

I just read that there - fair dues to you and best wishes - more awareness of these conditions is essential - wishing you all the best.

Yeah that's a really well written post Az. All the best buddy.