Hi there,
Don’t really know where to start…
My daughter had a stroke due to a AVM in June 2017 and another one in October 2018.
In June 2019 she was embolized with success.
However, in February 2020 she did a angio where they found a small shunt. Another angio was made last week and they confirmed that a small shunt is still there and they want to do a MR in compliment to the angio.
In her journal (we can read it online) they propose a gammasession in order to close the nindus in full.
This is were I freak out!
After three years of worries, sleepless nights I finally thought that this nightmare was over - and now it starts all over again!!
I’m so so scared for my little girl. Will she get a third stroke? Will they be able to close the AVM compleatlly? Will she survive another operation?
The questions are endless and I’m so so scared…
Hi and welcome. Being scared for your daughter is completely normal, and even more so given what you have been through with her. Sounds like they have a lot of it shut, which is great. By gamma session, is that gamma knife? I would guess, and that s what I had. A number of us have had embolization or gamma, and quite a few have had both.
I can only imagine the stress on a parent in these circumstances, and don’t be afraid to lean on us here. I am a parent as well, and am glad it was me with the AVM vs either of my kids. Sounds like you have a team that looks at all the options, which is good. I hope the direction is finalized soon. Take Care, and once again welcome. John.
There’s not much I can say here except I hope all goes well for you and your daughter.
I had embolisation 5 months ago and it was completely obliterated. But have had a scan every 30 days since then and have another angiogram to “check” it in a month. Plus an anguogram every 2 years after that for the rest of my life to “check” it… they can recanalise etc sadly
One thing I look at as a positive is that at least they have found it and hopefully this time they can stop it. These things are never guaranteed and I can only say that at least they found it and if it was 20 years ago, they didn’t have the tech to fix it so at least your daughter is in the best age to date for finding and fixing these things and it will only get better
My daugther was embilized approx a year ago and was - they told us - completly obliterated. However in february they found a small nindus and now six months later they see that it has feeding arteries so they want to close it permently with gamma. We have a upcoming MRI and they might revaluate after that, we´ll see…
Ok seems like they are being thorough so she doesn’t experience another adverse event. I haven’t had gamma knife so maybe others can answer but from what I’ve read, it’s less risky in most ways compared to an operation.
Thank you for your reassuring words! Although I am well aware that we have the world’s best hospital care here in Stockholm with world-leading neurosurgeons, I am just a worried mother who wants the best for my daughter.
During the angiography last week, they saw a nindus that is not completely closed after the embolization and that is what they want to close completely. As I understand it, they want to use a gamma knife this time instead of embolization. Now we are waiting for the call to MRI to be done first, new decisions may be made depending on what the results show.
Yes absolutely! They are incredibly good at following her up and she gets the absolute best care. The first cerebral hemorrhage came spontaneously and it took about 1.5 years before they could find the malformation. In fact, it was not until after her second cerebral haemorrhage that a small AVM could be seen on the X-rays. So then a decision was made about embolization that was made last summer. I had so sincerely hoped that she was “done” now and could be able to be a child again. She has not been allowed to be a full child for over three years now … It breaks my heart
There are a number of folk here who have had gamma knife and/or embolisation. I echo all that John has said and I completely understand the worry you have as a parent.
The gamma knife is uncomfortable but is a useful way to get at areas that can’t be approached by surgery or embolisation. It’s a lot less fuss than doing the embolisation, so hopefully your daughter will find it not so difficult as the embo.
