Hi Kel, did Queens plan to do your treatment in two stages?
Hi Solik
I am sorry to hear of your sonās diagnosis. I wish you both the very best on this journey.
Yes, Mr Kitchen at Queens Square said I may need two treatments but we wouldnāt know until the day of the Gamma Knife. On the day it was determined one treatment, 1 hour 40 mins in the Gamma Machine. He said I had the upper limits of what could be given but still within the limit. Told it will take up to 4 years to work with a 75% chance of total obliteration.
Have they mentioned your Son may need staged treatment?
Best wishes
Hi, thank you for responding. Yes, it is supposed to be done in two goes. We were told obliteration chance was between 60 and 70%. Did you do it all under GA?
Hi Richard. I made it through the angiogram safely!! The doctor and nurses, were amazing. Thank you for your great advice and encouragement. Sadly there is still 1% left!! Iām gutted and very confused about what this means next. The doctor said it was a tiny vein left but no shunting, maybe 1 or 2mm, left but didnāt know if this could still cause a haemorrhage. Very confusing. Iām assuming it still can if itās not totally gone. Have you come across this with anyone before and do you know what they did? I have to wait 3 weeks now to find out, which wiil be a long wait for me. I hope your wife is recovering well. Gill.
Darn!
Well, Iām glad you got through the angiogram nicely. I still reckon itās a good thing to know what the situation is rather than not know, but it is a fine line, isnāt it?
I agree with you that if thereās a bit left, youād expect it to continue to evolve over time. Certainly some people have trouble with AVMs continuing to develop if not got 100%. Anyway, thatās what your doctors did this scan for and thatās what theyāre going to chat among themselves as to what the plan might be.
I assume theyāll take your results to a multidisciplinary team meeting (āMDTā) to discuss from each point of view, rather than giving you a view of their thoughts straightaway. I like the idea of MDT meetings: I think it stops rash or narrow-minded decisions: but itās does mean you need to wait to see what Plan B is.
Well done! Very best wishes,
Richard
Hi Richard,
Yes I agree Iām glad I know and they have an excellent team so Iāll have to wait and see what they decide. Hopefully my risk of haemorrhage is less now itās smaller. Thanks. Gill.
Exactly. Got to think positive about this stuff until someone says otherwise.
Do you know what the doctor means by 'thereās no shunting? ā
I think that means no blood passing through from artery to vein.
Hi Everyone.
Had my follow up letter today from the Neurology MDT following my MRI back in March.
They say the appearances are improved compared to pre-treatment
It seems the Main artery feeding the AVM is starting to close down although there is a small volume residual shunt which they say is to be expected given the small amount of time since treatment.
This is good news as it shows the target has been hit!
I will now have to wait until 2024 for my next MRI which, hopefully will show obliterationš
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Gamma knife is a tough gig of waiting. Congratulations on positive signs and very best wishes for the rest of the distance!
Richard
Great news, and as a Gamma Knife guy I agree with Richard, the waiting is tough. Iām quite type A personality wise and always joke that there is two options, now or immediately! I did accept the waiting in the case of my GK, but the first bit took some getting used to. Take Care, John.