Has anyone experienced gliotic changes alongside their treated AVM? Just had a letter today confirming I have these changes. This is 3 and a half years AVM diagnosis and a couple of years post embo and GK.
I was hospitalised in 2020 with a suspected stroke when was dx seizure but no one really explained what kind and I wasn’t treated for that. But it was then they found the AVM and I think they put everything down to that.
However in the last couple of years I’ve had what I think are focal seizures then another stroke like seizure last weekend. Hospitalised again blah blah balh
anyway also, 2 months ago I was dx with breast cancer and I’ve discovered its metastatic and in every part of my spine.
On and on it goes. However if you have any experience of Gliotic changes and their effects, I look forward to your input.
I had to look up gliotic, so certainly no help there. I am saddened with your news in respect to the breast cancer and current status, and want to pass along my thoughts to you. I know there is challenges ahead, but know we are here for you on this forum in whatever support we can provide. I know it is just words from afar, but I am thinking of you. John
thank you. I feel if I can understand and have treated the brain stuff that’s going on. The quality of the time I have left will be increased. I have two sons, 16 and 17. They need me still.
I have gliosis in my brain now after a rupture in the left frontal lobe 2021, had surgery to remove and no seizures. I have a lot of memory loss now, I think mostly because of the location. I’ve been told it’s just scarring and an important part of the healing process just like any other injury. My thoughts are with you for future challenges, you’re so strong
I don’t know anything about gliosis, either, but googling it seems to indicate it comes from spinal injury or stroke, so I think what’s going on in your spine could be the thing that’s driving the gliosis, or it could be related to your stroke or possibly the AVM.
The article I’ve read talks about breaches of the blood-brain barrier, so might be related to anything bleed-related in your brain or spine. But I’m just googling.
thank you. The treatment for metastatic breast cancer is, of course, palliative. I really can’t beat that. But thank you for your kind words. I appreciate you all.
Hi again Richard. I’ll never forget your kind and calming words in the very beginning and the patience of your wife <3 who sounded just lovely in her calls out whilst we were talking on the phone. I’ll never forget either of you.
Yes, it’s confusing isn’t it… which came first, etc. Since I wrote the initial post Neurology have upped the dose of anticonvulsant, Leve something, and that has definitely reduced the seizures. Chemo session no. 2 is on 3rd October. I’ve felt dreadful with that and the immunotherapy but there’s a definite improvement in brain activity with anticonvulsants and Norman is still happy that, as far as the Embo and GK are concerned, my brain is showing a good outcome.
You may remember I’m also an amputee having had bone cancer as a kid. I’m feeling pretty much fed up with it all, but glad that you’re all here.
H x
It’s good to talk to you and if I’m honest, I’d forgotten about the amputation. I’d also forgotten anything about Mrs D shouting up in the background but that’s pretty usual for her, so I’m not at all surprised!
It’s really good to know that Norman says things are looking good on that front because we both trust him quite a lot, don’t we?
If you are well enough some time / at a point where you’d not be putting yourself at undue risk by socialising and you fancy a trip out for a tea or coffee or brunch or something, let me know.
