I got an appointment the other day for a CT scan in Southampton for Monday to see if my radio surgery is actually working.

I mean, I'm excited, if they say it's working then I'll be over the moon.

But there's the other side, if it's not working then it means I'll spend my days worrying about if I'm going to drop dead any second.

For those who don't know, I have to bad veins in my head that developed at birth, they're weak and can burst at any time, so I've had a stroke already, but there could be more at any time.

I'll keep you posted.

23 Replies

  • Have you got long to wait, hope all goes well for you and you can have peace of mind, keep us updated x

  • Appointment is on Monday, results may take longer.

  • I don't actually know what radio-surgery is. Can you explain it for me & anyone else who's not familiar with it.?

  • Oh right of course.

    The tangle of blood vessels (called an AVM, which can burst at any time) are very deep inside my brain, so they couldn't cut them out directly without doing me some serious damage, so eventually I was offered steriotactic radiosurgery. The surgery meant they bolted a cage to my head and locked me into a machine that fires 201 rays of gamma radiation into the blood vessels that are causing me problems, and if it works, they will turn into scar tissue over time so no blood can run through them (AVM's have "weak points" that burst due to high blood flow)

    My AVM is about 3.6cm in diameter and very diffuse, so it's tricky to get to, and tricky to seal up. They'll be telling me if the surgery is working or not.

  • Thank you for that,Ben. It makes me realise how fortunate I am to have had an accessible problem and I respect you all the more for your good-naturedness in spite of your obvious anxiety.

    And Leslie, also, is so positive and it seems there is every chance of a good result tomorrow. You know we'll all be keeping everything crossed that you won't be too nerve-wracked so you'll need to update us a.s.a.p.

    Have a big hug in the meantime. xx

  • Hi Ben, As you know, like you I have an AVM and am in my 6th year. I have had 3 lots of stereotactic radio surgery.(The cage screwed to the head is so necessary, but so not nice :( )

    My follow up appointments have been angiograms (wikipedia describe this in detail) and they have all shown improvement. I'm due back to Sheffield sometime this year for another angiogram and if AVM still there more radio therapy. (I'm sure your thinking 6 years is a long time and it is, but I am slowly but surely getting there. 6 years,10 years.... Whatever.... I'm in for the long haul :) )

    Going on my experience, the surgery you have had ticks all the boxes for a successful reduction to your AVM. Also, be prepared for possible further treatment. I know all AVM's are different.... and this is I not an easy time for you, but try not worry......I know it's easier said than done, but from someone who knows what your going through try your best..... It's a long haul this treatment and recovery journey.........hang in there Ben......wishing you all the best for Monday...Jo

    P.S Im sending vibes of good wishes to you and will have fingers, arms, legs and eyes crossed.......not a pretty site :(

  • It's good to have someone about who has the same condition as me, buts further down the line :) As long as there's been some improvement, I'll be fine I think.

    I don't mind it taking a long time, I just want all of it gone. Like, all of it.

  • My abiding image of Leslie is, now, really quite odd......especially with the crossed eyes ! xx

  • Good morning Ben,

    I really hope its fantastic news for you tomorrow. You deserve some!!

    Look forward to hearing all about it.

    Very best wishes, and love from Molly x

  • Me too, thanks.

  • Good luck, I hope it all goes well and you get the news you are hoping to hear


  • I'm doing a strange rain dance to improve my luck.

    Love the fact that you're a writer by the way.

  • I'll join in the rain dance, I hate heat :)

    I love the fact you love the fact that I'm a writer. If that makes any sense at all!

  • Hi Ben, good luck for Monday , I know luck doesn't come into it but you know what I mean, all the best , you are doing so well x Janet

  • All the luck is appreciated :)

  • I hope you get good news on Monday...

  • Urrrggghhh it's making me feel sick.

  • Morning Ben,

    Lots of good wishes for today :)

  • I'M BACK

    I have to wait for results, I asked the woman if I could just take a peek at the scan as scar tissue is pretty easy to see. But she wasn't having any of it.

    I should have known it really, c'est la vie I guess.

  • Good to hear from you:) Shame you can't get results today, hope you don't have to wait too long. In the mean time worry hat off and relax, chill, enjoy life hat on please..........

    Yeah!......! I know easier said than done....take it from one that knows and try...all the best :)

  • Hope you get the good news in a few days. :-) xx

  • I'll just have to keep myself extremely busy.

  • Good luck!

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