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My sister's having a brain op (not MS)

My sister’s had a benign (as in non-cancerous) pituitary tumour for absolutely years. Unfortunately, in her case, benign hasn’t meant symptomless. She’s been struggling with lethargy and other depressing, albeit not disabling symptoms for years.

She’s now exhausted all four (I think there are four!) drugs for controlling it, and all either didn’t work, or had side-effects that made her feel worse, or both.

Although there’s a good chance symptoms would resolve naturally at menopause, she’s only 44 yet, and absolutely adamant she can’t put up with it that long. So she has pushed for - and eventually been offered - surgical intervention. That means a brain op.

She’s been advised that there are risks, including to her sight, as it’s very close to the optic nerve. My mother and I are both naturally more conservative about treatment, and feel we would be more inclined to stick it out, and not take the risk of surgery. My view is coloured by the fact I live with MS, for which there is no available surgical intervention (leaving aside the controversial CCSVI theory), and it seems to me my sister’s symptoms are not so very debilitating, by comparison, that they merit risking one’s sight for. She’s a single mum of two young boys!

My sister and I are not close, either geographically or emotionally, and I respect it has to be her choice, but I still don’t want her to go ahead with this. It doesn’t help that the nurse on the actual care team responsible has told her: “Oooh no, I wouldn’t do that!” I’m not sure if this was ethical or not, although I do think Sis should hear voices both for and against, and not only those who tell her whatever she wants to hear.

The surgery was scheduled for the week before Christmas - 18th December - but now we’ve had a shock, as the hospital as been in touch to say the theatre is not available that week (Why didn’t they know that already?), and could she have it done NEXT WEDNESDAY - which she has agreed to.

I know it’s none of my business, but I don’t want her to do it. I’m worried she will end up blind (or worse), and what will then happen to my nephews? And all for the sake of symptoms that would be considered a mere minor inconvenience to many here. She doesn’t appreciate what many live with, without making such heavy weather of it. I know there’s an argument that why should you live with any health issue, if it’s fixable? But fixable at what cost? I’m really apprehensive, and don’t want her to do it.

I know the hospital wouldn’t go ahead if they thought it was severely contra-indicated, but on the other hand, they have been resisting this route for years. I think it’s only because my sister wouldn’t back down, that they’ve eventually caved in, but I didn’t get the impression they were exactly enthusiastic about it.

Did think about going anon for this one, on the off-chance she might wander by and read it, but on second thoughts, it would still be fairly obvious it was me, even if I removed my name - too many suspicious coincidences for her not to recognize her own story. I thought of changing a few key facts, like giving her a different type of tumour, but then it might not entirely make sense.

Tina

x

Hi Tina

I really don’t know what to say. I completely understand why you don’t want your sister to go through with such a risky operation and how worried you are both for her and your nephews. My sisters don’t even speak to me and yet, if I were to hear either one of them was having a brain op, I would still be worried about her.

However, your sister must have given it a lot of thought and decided it’s worth the risk. I know you feel her symptoms are manageable especially compared to MS symptoms but it’s how she feels that matters and unfortunately you can’t change how people react to pain and discomfort and we all have different pain thresholds. (For instance, I breezed through childbirth with no pain relief and often wonder why such a big deal is made of it. However, I do believe I have a high pain threshold and I only have the one child so have no idea if any subsequent children would have been so easy for me.)

If it’s any consolation, I did have a look at the Macmillan website and it says that surgery is the most common treatment for this type of tumour so it must be fairly successful. Maybe that is what urged your sister to push for the operation, has she been chatting on a forum too perhaps? The operation doesn’t appear to be the end of the treatment, it seems that she will still have to take medication afterwards to replace the lost hormones.

All you can do, realistically, is stay strong for her, your nephews and your mum. Does your sister have a local network of help for her and the boys whilst she is in hospital and recuperating? I do hope it all goes well for her, maybe she feels her quality of life (and the boys’) is so impaired that this is her only option. Fingers crossed for a successful outcome.

Tracey xx

Oh Tina, I know I’d be terrified if one of my sister’s was going through that, I don’t have any useful advice or anything but I’d imagine being zipped forward to next week feels a lot like she wopuldn’t have had sufficient time to really consider it :frowning:

And like you say, until I was diagnosed wth this, I probably didn’t really think about the “live-withs” that some people contend with. Having that kind of surgery is pretty scary though and I’d imagine is causing a lot of anxiety.

OK, I’m waffling, just wanted to show some support hugs

Sonia x

Hi Tina, What a horrible situation for you all. Especially as it’s coming round so quickly, there isn’t much time to get your head around it. All you can do I suppose is offer support as and when you can. Much easier worrying about our own health. I really hope all goes well for your sister . Take care Laura x

Hi Tina

I truly understand you being apprehensive, I would be too. I do hope it all goes well for your sister.

Pam x

Hi Tina - sorry to hear about your sister. Scary time ahead for you both. Although you may not agree with her decision I know you will be there to support her and the little ones. Understandably you are worried about her losing her sight by having the surgery but she may be thinking that if the tumour gets any bigger she will lose her sight if she doesn’t go ahead. Really difficult one. All you can do is support her in any way you can. Hopefully she will be well on the mend to enjoy Christmas holidays with the family as she is having it done sooner than anticipated. I wish her a speedy recovery. Please keep us posted and try not to worry too much - easier said than done I know.

If she were you, she would probably do something different. But she isn’t you, she is herself with her own experiences, her own driving hopes and fears, her own delusions and blind-spots, her own definitions of caution and recklessness and her own path to follow. Watching an adult and loved relation doing something you think is too risky must be a bit like watching an adult child do the same - there isn’t actually one damned thing you can do about it, and that is intensely frustrating.

Also, the risks one elects to take oneself can feel OK even when they look frightening to our loved ones. For instance, many of us who have decided to take Tysabri will tell you that our nearest and dearest were far harder to persuade than we were. Things look scarier from the outside; sometimes is is actually easier to be in the hot seat than it is to stand by, looking on. Deciding to accept a risk gives one - rightly or wrongly - a feeling of control. Watching someone else decide to accept a risk has no such consolations.

I do share your frustration with the way in which people without a chronic progressive neurological disorder tend to take good health for granted. It sounds as though you feel that your sister is expecting perfect health as her natural entitlement, and simply cannot take the reality of serious risk seriously. But I do not think there is one thing you can do about that, except wish her well and hope for the best!

I hope that it all goes very well. Good wishes to you both.

Alison

hi tina

my dad had/has a tumour on his pituitary gland.

he ignored warnings from his optician - the 3rd warning came the week after my mum died suddenly (aneurism)

so dad did nothing about it.

6 years later i got a call from wigan infirmary asking if i was mr hugh fletcher’s next of kin. i said that i supposed i was being the eldest of 3 daughters. he said “your father MUST get her TODAY!!! because he has a brain tumour”

my dad, always a workaholic, was working so i pulled up and said “get down off that scaffolding”.

i took him to the hospital and it seems that the tumour had grown so much that they couldnt remove it in one piece.

they operated through his nose because this gland is situated right in the centre. they had to cut the tumour to bits and remove the bits.

he had a repeat operation a few months later.

so now for the rest of his life he has to have appointments to check on it and a monthly injection to shrink it.

dad is now 79 yrs old, mum died 26 years ago so that shows how long he had ignored it.

but he survived, in fact he is such a party animal. always gallivanting!

dad lost the sight in one eye and part of the sight in the other eye because the tumour damaged his optic nerve.

so your sister should be alright if my dad is anything to go by.

good luck i wish your sister well and hope that you can reduce your worry.

carole x

Hello Tina. This is a tough call for your sister and a worry for you and your mum. Is your sister fully aware of the risks to her eyesight and the reality of how it will effect the way she cares for her children if things don’t go to plan. If you and your mum are satisfied she does then all you can do is support her. I hope the operation turns out well and your sister makes a full recovery. All the best to you and your family. Noreen,

Hi Tina It is such a difficult decision for your sister to make. My friend last year when she was trying for a baby found out she had a Benign tumour in her brain which was the cause of her not ovulating. At first she took the decision not to operate as she had a child already and started adjust to not having any more children but further on the tumour started to grow and her sight started to become affected. My friend in summer had the operation to remove the tumour and it was a successful procedure, she does now where glasses as her sight isnt 100% but this was something she had to do before the op as the tumour was around the optic nerve area. Hopefully now as the tumour is removed after some more check ups and the with the meds she is on my friend will be able to start planning to have another child. Like you said you will be there to support her and the rest of the family and that is what she needs. I wanted to share my friend story I know everyones different but thought it may help you hearing from someone whos been there with a friend and had a positive outcome. Big hugs to you. Polly x

Hi Tina, oh dear, I do feel for you. Although you say you and she are not emotionally very close, but even so, blood being thicker than water and all that, you are bound to be more than concerned.

But, it is her brain and her decision to go for the op or not. You just have to hope for a good outcome and be there, on the phone, if not in person.

Now I have 3 stories for you about very similar problems.

My dear friend and neighbour had 2 benign tumours removed 5 years ago. She didnt know she had them and after a period of time where her mobility and thinking were badly affected, she saw her (our) GP, who treated her for depression. A fall at home got her into hospital and the tumours were found and removed. She recoverd well. She`s now 77 and although her mobility isnt 100%, her thinking is back to as it was before, ie very clear and sharp. She is 77 and a marvelous help to me!

Another neighbour also had a benign tumour, at the base of her brain. She was operated on and sadly has poor vision in one eye now…not what you want to hear, I know!

Now, sad news has come about my hubby`s sister, in Canada. Her brain and lung cancer has returned after a year, when she was told she was cancer free, after a series of ops and treatment. We feel she is less likely to beat it this time…but we are all hoping and praying for her.

So, there it is Tina…good luck for your sister`s op next week and lota of luv, Pollyxxxxxx

Tina, I can’t give you any advice, I feel if it was me I wouldn’t have the operation, but maybe if it was me i would feel differently. I also don’t think I would be wanting any family member to have the operation either. However, I really just wanted to say that I hope things go well for your sister and I will be thinking about you. Will you let us all know how it goes please. Cheryl:-)

Thanks everyone, for the replies. Sorry not to respond to all individually, but as if I wasn’t stressed enough, I have a v. limited internet connection at the moment - about equivalent to dialup (remember that?) It’s only just about usable.

I’d half-hoped my sis would have a change of heart, but she’s absolutely determined to go ahead, claiming she is “not worried”, and even looking forward to it. I’m not sure I find this reassuring, as I think not being worried about impending brain surgery is a little bit abnormal, and may mean she has completely failed to pay heed to the risks. She tends to be rather impulsive and impetuous, and once she has got into her head that something will be the answer, she doesn’t always think it through.

I know it’s not just us being typical over-anxious family, because even the nurse admitted she wouldn’t have gone ahead with this. She must see all shapes and shades of this condition, and obviously didn’t think my sister’s case was bad enough to be doing what she’s doing.

I’m quite sure she’s had the risks explained to her - the NHS would be negligent if they didn’t do that - so it’s her informed choice, and not one any of us can rightfully challenge or overturn. I still wish she’d think again, though.

Just to put a couple of things in context, there’s been no suggestion, ever, that she might be risking worse by leaving it. It’s a benign tumour, not a cancer, so this is purely elective surgery - there’s no medical necessity, and symptoms would probably be self-limiting in a few years, anyway (basically, because the tumour is secreting hormones, her body keeps thinking she’s pregnant or breastfeeding, but that should calm down once she reached the menopause).

It’s a very common tumour - an estimated 1 in 5 of us have one, but in the majority of cases, it’s clinically silent, and discovered only incidentally - including at post mortem. She’s been very unlucky to have any symptoms at all, as most people don’t. And surgery is definitely not the most common treatment, but considered a last resort, seeing as it’s benign (obviously the same would not be true if it were cancerous). The usual treatment is management by drugs, which is the path her consultant has always favoured over the years, but which she has now rejected.

I do think she has quite a low tolerance threshold for any sort of illness or infirmity; some people - like many on this forum - would accept it as “one of those things”, and try to make the best of it - worse things happen. But she has never seemed able to do that. I’ve no doubt the symptoms ARE a drag and a nuisance, but I’m not convinced they’re much more than that - certainly not enough to gamble your eyesight.

But anyway, the die is cast - she’s made her decision.

I know I said I couldn’t reply to everyone individually, but I can’t finish without saying to Poll that I’m so sorry to hear your S-I-L’s cancers have come back. I found it truly remarkable and inspiring she ever got the all-clear in the first place, but I can’t help but share your feelings the odds are not so good a second time… I suppose, when things get that desperate, even a year she wouldn’t otherwise have had is a bonus. But I will keep my fingers crossed she’s still got a bit more luck yet.

T.

xx