Being decisive, in a quagmire.: Right, yesterday I... - Headway

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Being decisive, in a quagmire.

Gaia_rising profile image
7 Replies

Right, yesterday I had a letter from the hospital.... drumroll, please....

Another brain-surgeon, telling me stuff I already know about what's wrong with my head, and asking me if I want a consultation prior to the surgery, in addition to the routine consultation during the planned admission.

Gods, but I'm irritable, aren't I? I'm frustrated, I wasted most of a work-day last week travelling to Sheffield and back, on six smelly buses, for the first consultant to tell me what he'd already told me in August.

"Do you remember Dr ...?"

"No, but I remember you already told me all of this once."

(Paranoia-flash, there, that I might have misremembered the brain-surgeon phoning my mobile, after I sent a tetchy email.)

So, I've politely declined the offer of a pre-pre-surgery consultation, on the grounds that I know what an aneurysm is, and I don't need them to draw me a picture. I know what the procedure is, and I know the associated risks. What I need to be very careful NOT to do now, knowing me, and knowing what I'm like, is to decide that I'm wasting the surgeon's time, that a 4mm aneurysm isn't worth bothering with. I have elected to have the operable aneurysm coiled, and that's what's going to happen.

I have emailed the secretary-to-the-neurosurgeon, politely declining the pre-pre-appointment, and requesting that the surgery be scheduled close to the start of either the Christmas or Easter school holidays, to optimise my recovery time, if possible. I've asked that they don't try to contact me on the land-line, but use my mobile, or email, so I don't get a rehashed version of a message relayed by the husband or son. My brain, not theirs.

The first surgery was traumatic, emergency surgery, I didn't know where I was, what had happened, or why I appeared to be wearing someone else's pyjamas. I'm not naive enough to think that the next round of surgery will be raindrops on roses, and whiskers on kittens, but it will be different to the first. I was always a bit cold, and detached, even prior to the brain-leak, it's the PTSD that was there before, and I've managed to re-train 'shutting down' into 'stepping back'.

I'm just venting again, no-action-required, just letting you know that, after a phone-call to tell me what was going to happen, then an appointment to repeat what had been said in the phone-call, I have a letter, confirming what was said at the appointment, and asking me if I'd like another appointment.

Anyone would think it was brain-surgery.

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7 Replies
randomphantoms profile image
randomphantoms

Yep Gaia

Anyone would think it was brain surgery. Maybe it's called covering their butts just in case.

You did really well not to scream "Its a brain injury you **********not a learning disability."

If you need us to remind you nearer the time that you are doing the right and sensible thing by having the surgery I for one will be happy to help.

Lovenhugs

Xoxo

razyheath43 profile image
razyheath43 in reply to randomphantoms

BRILLIANT! and good luck with the op,its youre body,youre brain,youre treatment!

Kirk5w7 profile image
Kirk5w7

Not easy to deal with, my sister has been living with an in- operable aneurysm for 10 years now, only to be told last year there was a new procedure. Long story but after much soul searching she decided to go ahead with it, only it didn't work, the aneurysm was too large for the procedure, 11mm, and it's on her carotid artery so too risky. Now they've told her there's yet another procedure, but she doesn't feel like being a Guinea pig .

You must do what you are comfortable with, and good luck xxx Janet

Gaia_rising profile image
Gaia_rising in reply to Kirk5w7

Thanks, Janet.

The third aneurysm is an 'early choroidal' aneurysm, and of negligible size, I'll have the routine monitoring, and, if it does enlarge, there'll be a decision to make at that point.

The second one, the superior cerebral one, hadn't notably enlarged, but I am having some facial numbness, which can be due to that vessel compressing the trigeminal nerve, which gives sensation in the face...

I've probably mis-spelled stuff, first day back at work after half-term was a long one.

I'm going for the surgery on the second one, when I get a date, if it's not a date that falls in the school holidays, so be it. I know I'll still have the anxiety about the third one, but I'll know I've done something about the second.

Kirk5w7 profile image
Kirk5w7 in reply to Gaia_rising

Hi, I'm just pleased you can have coiling, my sisters has to be "meshed" and a stent used too to keep the artery open, when it was first found it was 10mm and has now gown beyond the tried size, so we don't know what happens from here because it's all time critical as she has leukaemia too. It's a mess, she is 70 next birthday and they keep telling her she'll be too old soon, brilliant.

I hope it all goes well for you, it's so hard to make those decisions, well done.

Love Janet x

malalatete profile image
malalatete

Woohooo progress. Hope they take on board what you have asked for. I am here in Sheffield today too just out of my appt with Mr Patel..will be posting an update later once my head has got sorted...

Gaia_rising profile image
Gaia_rising in reply to malalatete

I'll look out for the update-

I can only hope that they can shift the surgery to fit in with my timescales, the whole emergency surgery on the rupture was so traumatic and distressing, I'm still feeling the after-shocks in terms of anxiety, and inappropriate means of coping. I just want the aneurysm sealed-off, made-safe, so I have one less thing to fret about.

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