Update on Millie. Her angiogram booked for 19 October was cancelled and moved to 16 November so sadly still dont know if AVM was fully removed when she had craniotomy back in July.
She has since been diagnosed as having low Iron so is on medication to treat this.
I noticed a.comment on a different forum on facebook that suggested it was very difficult if not impossible to remove all of the AVM, which is why recurrence happens because of any time residual left. Whats everyone elses thoughts on this?
Millies was.in her right frontal lobe and surgeon seemed confident he had removed it all.
I hate this road we are on and just need some positivity thrown our way.
I’d say whether it is difficult or more feasible to get rid of the whole of the AVM is very case-specific. So that’s why it is interesting and important that your consultant thinks they got the lot.
It’s difficult when things get put off like this but take heart that the consultant thinks they got it all.
Various people would tell you that it is more likely to get it all with a craniotomy than with an embolisation. There is certainly skill and complexity involved in mixing and blobbing glue in exactly the right place when it comes to embolisation, so I can believe that an Onyx embolisation can be tricky to deliver exactly what you want in exactly the right place with exactly the right consistency. To my mind, a craniotomy is more straightforward: you either clipped off at exactly the point you wanted or you didn’t.
Just stay the course. You’ll get there
Thanks Richard, you are always so supportive with my posts and your replies have always helped ease my racing mind.
Millie had embolization and then crainiotomy immediately after.
How are you? I hope all is well?
All good here, thank you.
Millie’s embolisation will have been to reduce bleeding during the operation. I expect that all of the embolised area will have been resected, so it is that visibility of where to isolate it that is needed.
Actually isolating with Onyx does sound complex. My doctor used something called PHIL glue, which comes in pre-mixed vials and sounds a bit less fiddly.
Hi, I know you hate the road you’re on. But it’s paved in love. Hang in there.
Mine was in my right frontal lobe too. I think that’s an accessible place so that is one good thing. Best withes to you, Greg
My AVM was located on the right frontal lobe also & upon removal through craniotomy was advised by my neurosurgeon it had been removed completely… a follow up angiogram after surgery confirmed removal and not so long ago a further 10 year angiogram also.
I believe you can have it removed completely otherwise so many ppl here would be posting about regrowth all the time… I have read children may be susceptible to reoccurrence due to the brain still developing but each case is different… kind of like saying all elderly ppl can die from COVID… it’s true but not always the case.
I hope this puts your mind at ease… God bless!
Thank you Adrian. I really appreciate your positive reply. Was your AVM still im tact or had it ruptured?
I have heard that reoccurrence can happen if they fail to remove the complete AVM as residual can find new ways to route, so to speak.
Just got to keep hoping and that my daughters has been completely removed. The surgeon seemed quite confident he had got it all out, and they wrote to me to say they had reviewed the post operative CT head scan and there were no concerns. I just know angiograms are alot more thorough with the detail.
I am so pleased you have recovered so well from yours and you can put it past you.
Best wishes to you.
Thank you Greg for your postive reply. You are right, from what I have heard about her AVM location being more accessible than others.
I hope you are doing well.
Best wishes sarah x
I had a bleed 1 month prior to surgery & also before my first consultation appointment with my neurosurgeon after initial diagnosis.
Angiogram is the gold standard from what I see and hear when it comes to AVM’s… I have recovered but will be honest and say the trauma of it all never leaves you, however gives you a different outlook on life.
As a parent I pray your little one gets through this and can live a beautiful life as she deserves… it will definitely make her stronger and much more resilient… God bless!
I hear you about being traumatised. I think about it most days. When my phone rings and shes in school i panic. When she stays with her dad at weekends i cant settle properly.
I miscarried in 2007 quite early on in pregnancy but i can hand on heart say that this has been the most traumatising blow ive ever experienced. Shes my rainbow baby, even at 10 years old she will always be my baby girl.
I definitely can understand and relate to how you’re feeling… it is normal as a parent to feel this way under these circumstances… God bless!