Last Monday my mum went for a brain scan after having very painful headaches, and frequent episodes of audio hallucinations. By Friday she had been informed that she had findings of a vascular malformation arising from the left middle of the cranial fossa along with oedema. We’re still unsure as to what happens next and obviously as you can imagine, we’re all very concerned and anxious. My worst nightmare would to be to lose my mum as she is such a massive part of mine and my children’s lives and was hoping for some positive stories. Tia
I think we all recognise the worry that this stuff brings and I hope we can help you a little along the way. If it helps to ask any questions about what these things are, how they might be treated, when they are not treated, please feel free to ask.
My experience when at a similar point to you (though I was the patient) is that learning about this helped me to rationalize about the very scary corner that life seemed to have turned. Reading here helped sometimes and made it a bit more scary sometimes but having some people to talk to helped me. I hope we can help you in a similar way.
I feel as if I’m worried what the outcome of this will be, whether she will even be here much longer , I don’t know much about the condition and it’s really worrying me I don’t even know what to say to her to make this any better. What would happen if she couldn’t have the operation? Thanks
So the risk with an AVM is that it might bleed and a bleed in your brain is a stroke. What the doctors will look at is whether it is possible to operate on it to reduce the likelihood of that happening.
There are three ways in which this is done, depending on the situation.
Open surgery. This is called a “craniotomy” and is probably what you think of as brain surgery.
Catheter embolisation. This is done by navigating a very fine tube up through her arteries (they would create an insertion point at her groin or her wrist) and inject glue or other blocking material into the AVM to reduce or remove the flow and reduce or remove the stroke risk.
Radiotherapy. Sometimes the best option is to zap the AVM from the outside, like you would with a cancer.
Sometimes, the AVM is in such a difficult or invasive place that actually you’ll do as much damage getting to it and operating as to leave it alone. In that case it is usual to leave it be. If she were to have a bleed in future, they would operate but it isn’t always sensible to do an operation to try to reduce that likelihood.
So that’s the kind of things the doctors will be looking at and considering.
Irrespective of which approach the doctors recommend, we have people in the same position as your mum. Not necessarily a lot of people but we will definitely have some.
Do ask anything else you like. I’ll fill in as many blanks as I can.
Firstly let me welcome you to the family Tia, I am sorry to hear about your mum.
It is normal and understandable to feel the way you do and the only thing I can suggest is to be strong and positive cause there is light at the end of the tunnel as I usually tell new members… It can be a slow and challenging process but with the technology we have today I’m confident the right decision and approach can be determined that will be in the best interest for your mum and your family.
You have so many experts out there with knowledge on these things and who can determine the best alternative in dealing with each individual AND options to seek other opinions where you feel it is needed… please keep us posted on her journey and if you have any concerns/questions please feel free to post them here for support by our wonderful members from all over the world… God bless!
Thank you for your positive reply, to be honest I am trying so very hard to be as positive as I can for my little humans❤️ it’s just the evening where I find my self constantly googling and scaring the living daylights out of myself ! Last we know is that it’s being dealt with at a bigger hospital in the south west in Plymouth and that they will be in touch for further scan in due course. Thank you all for being so kind, I haven’t anyone that I can really speak to on this, so your words have been more helpful than you realise
The other thing that surprised me was how slow NHS was to get me to surgery. I hadn’t had a bleed but could hear my AVM pumping blood into places it wasn’t supposed to go (not at high pressure, anyway) and not surprisingly I was frightened by the prospect of a stroke.
The theory is that the majority of AVMs are congenital, so your mum has very likely had it forever. That it is showing some symptoms is obviously worrying but it doesn’t necessarily mean it is going to give in straight away and neurosurgery practices in the UK try to balance the priority with which patients need to be seen to keep safe. So they are inclined to be much less urgent in their advance than we would like!!
It is important that she goes to A&E if she gets any symptoms of stroke or at least seek medical review if she has any sudden or severe symptoms but they do have cases of stroke that come up each week that will get to the front of the queue first. I had to wait from my own self diagnosis in April 2016 to the August for a doctor to give me a diagnosis, scans in the autumn and a referral to neurosurgery in November and then wait all the way to the following April for an embolisation. It’s definitely nerve wracking and it’s a difficult thing to balance being appropriately alert to any changes yet stay sane and able to function as a human, husband, dad, work person etc while you wait.
I found that getting a medical wristband stopped me worrying about it a little: if people found me with stroke symptoms in the street, they should get an ambulance anyway but to be able to include my identity, NHS number, diagnosis to date, my wife’s phone number and a very straightforward plea to dial 999 helped me feel that strangers could get me better support quicker if I did become ill.
I also tried to keep my mind busy with a project.
It’s a good thing to think about the parts of this you can control and the parts you can’t so much and decide how you can mitigate the situation to either put yourself or your mum in a more comfortable circumstance. There are some small things you can do that might help while you wait for the next steps to be taken.
As always, I hope that any of my thoughts may help.
Hi “A”, I have lots of battle scars and stories. My knowledge is limited medically compared to lots of people here.
Coming from a very stoic family that doesn’t express emotions, I have one bit of unsolicited advice. Tell your mum often that you lover her. Best wishes, Greg
I read the whole Bible that helped me a lot since I couldn’t believe these things were happening to me! A person that takes care of himself. It helped me realize who’s is control and I devoted myself to music arts and started using parts of my brain that were not used
From what I understand people with epilepsy have to draw a lot I’m not sure how science works but it helps use the other side of the brain
I don’t even know what to say to her to make this any better. What would happen if she couldn’t have the operation? Thanks
a lot I’m not sure how science works but it helps use the other side of the brain