So that time has come for Millies angiogram on 7 December. We go for her pre op assessment on 5 December, so only a few days away now.
I ended up back in hospital with my daughter last monday as she was complaining of stomach cramps and then started being sick. She was diagnosed with a urinary tract infection…it never rains when it pours. She has gotten over that now though so hopefully onwards and upwards.
Needless to say, im so very anxious about her angiogram and the results. Surely the surgeon wouldnt tell me he was confident he had removed it all if he hadn’t hey?
He also said it was unlikely for it to grow back. I have heard some AVM’s are more prone to regrowth but i havent a clue which ones they are. Millie’s was in her right frontal lobe. He is a brilliant surgeon but my doubts are creeping in again.
Think we will be staying in the hospital wednesday night and if all well we will be discharged on thursday. I will report back to let you know how we got on.
Im supposed to be having an angiogram also. My surgery was december 9th and it was supposed to be a year. I havent heard anything yet. Im hoping for insurance reasons we can wait till jan 1st. I understand how you are feeling tho. Its a worry. I feel like mines gone, but i still worry. I had an angiogram 6 weeks after surgery and he was super happy. Ill be glad when its over. Then he said 3 yrs for my next one. Im sure we will be ok. I know for a child it would be more worrisome. Hope youll let us know the news. Thinking of you both, Debbie
Hello again! I hope everything goes nicely this week. I’m with you on the thoughts around “why would the surgeon be positive if it weren’t reasonable?” front. He or she has seen what Millie’s AVM looked like before and knows what they did to fix it, how easy it was to access and whether there was anything they had to compromise on, so there’s every reason to believe that this is basically a check-up.
I’m surprised you’re thinking you’ll be in hospital overnight: other than the angio I had at the same time as my embolization, I’ve had both of my other angiograms as day cases. A fair bit of waiting around in the hospital – if they go in via the femoral artery, you have to lie flat for a few hours afterwards while it all heals up again. Obviously, everyone is different and if Millie is going under general anaesthetic (unusual but maybe a cause) then an overnight stay may be appropriate.
I hope it goes brilliantly and that Millie enjoys the visit. I can say that I found being in the operating theatre a fascinating experience and was able to see some of the pictures on a massive TV screen above the operating table. It can be unpleasant – depending on where the contrast material is being injected, it has different effects on the different bits of brain being irritated as the contrast passes by – but the surgeon should explain what effects to expect each time and it is very temporary.
Pressing down onto the wound used to gain access afterwards is painful and the worst part of the day but I felt it was not so painful as to be perturbing. The surgeon presses on the wound to reduce blood flow and help to start healing the wound.
Obviously, the reason for doing the scan is to make sure that everything is fixed. If the answer is “yes”, then I think that is the start of normal life once more. If the answer is “no”, then it means maybe a bit more work is needed before that happens. When I went for my checkup angiogram (at about 8 weeks post op) I actually wanted the surgeon to find a little something to do because I really wasn’t feeling as well as I expected post op. So I was a very doubtful convert to resuming normal life.
I hope the week goes nicely: do, please tell us how you both get on.
Richard, your responses are just brilliant. You really do have a way of explaining things with a positive light. I really appreciate your time in replying to me.
I had two letters delivered to me from the hospital, one adving to pack a overnight bag just in case and the other saying she will spend atleast one night in hospital. She is under general anesthetic. The risk sheet that came with her letter, i wish i had not read. Millie has had one agiogiogram before her embolization and craniotomy but she was in a induced coma so knew nothing about it. This time she is very aware and very anxious about it. She had no complications from previous craniotomy but as she was in induced coma im presuming she did not have general anesthetic.
Pre op in the morning so will no doubt find some more info out on what to expect.
Yeah, the list of risks is unhelpful reading. What I had to remind myself was that I’d done it once already and got through perfectly well. I remind myself that crossing the road or driving the car are not risk free but it doesn’t stop me doing them: life is very limited if you take those risks as too scary.
I completely understand her apprehension: I was very similar. My surgeon simply said to me, in anticipation of my first angio that I was awake for: “It’s going to have to be under local.” So I had to just go with it (and, like I say, it was fine and actually really quite interesting).
If Millie is doing it under general, then that makes sense for the overnight stay and they might even ask permission beforehand to embolise anything they find, so might possibly sort anything out in the one trip.
Anyway, have a good day today and I hope you both have a good week, too.
I’m sending good vibes to you and Millie on this next step. Hoping for a peaceful and uneventful quick trip to the hospital for you both. Tell Millie even after three angios, a big person like me gets a little nervous too! It’s ok to be a little scared, the most important thing to know is she’s safe and this is a really important next step for her. Best of luck, looking forward to some reading some great news on here soon
It’s natural to feel anxious about this as a parent… I had my AVM removed from the right frontal lobe also in 2011 & still get very anxious about any scans or angiograms!
My last angiogram was in February 2020 due to a MRI that reported my AVM had returned in November 2019… as you can imagine my heart sunk & I waited nearly 4 months in fear!
Luckily my angiogram did come back all clear & it was such a relief… I was also told my AVM had been removed completely & started to doubt the surgery just as you are doing… it’s normal.
Please keep us all posted & sending prayers to your family & hope she gets the all clear so she can move on with her life… God bless!
Thank you John, Richard, Savanna and Adrian for all your messsages of support. Pre op assessment all completed. She has been given some cream that she has to put on her nostrils 3 times a day and some anti bacterial body and hair wash which she has to use daily until procedure. We are in at 7:30am on wednesday and ive been told she is the first to go down so hopefully we wont be kept waiting too long as she gets hangry and she is nil by mouth from midnight tomorrow.
Shes shed a few tears today about it as she knows i cant stay with her during the procedure but hoping it will be over and done wity very quickly.
I will report back once i know how.its gone.
Thanks again peeps. You are all amazing with your kind words, wisdom and on-going support.
Well its been a fair old wait in the hospital but i feel all my Christmases have come at once. Millies angiogram confirm her AVM is no more. Completely obliterated. I am so so happy. She will have a mri at 2 years and another angiogram at 5 years just to be sure of no regrowth but theyve confirmed they have no record of regrowth at this hospital.
I feel like celebrating . I want to thank all of you who took time out to message me with support.
I’m still going to be on here though to hopefully support others going through what id call a living nightmare.
Fantastic! This has made my day as well! Enjoy a stress-free Christmas and it’ll be great to have you hanging round here to help others, not least mums and dads going through the same trauma as you guys.
if first on the roster, hoping all done by now and time to recover.
. I want to thank all of you who took time out to message me with support.