So I’ve just met my new neurosurgeon as my old one who I had dealt with for years has moved hospital. I was rather dismayed by his approach as he is suggesting to stop all monitoring/investigations of my AVM due to the sheer size of it and where it is and the fact that nothing can be done to treat it. I have had many further opinions after discovering the AVM nine years ago in 2009. Now, at 34 years of age I have learnt to live with my AVM. However, this new neurosurgeon has suggested no more routine scans/angiograms as nothing can be done to treat it. I do realise the extent of the AVM and how it is very large with dimensions of 3cm by 4cm by 5cm in the cerebellum part of the brain. Nothing can be done but I was rather upset that now the ‘conservative management’ is no more as it is ‘untreatable’. This comes to a blow for me as I would like to know for piece of mind for myself if the malformation is I increasing in size and hence protruding on other parts of the brain. When I mentioned this it seemed a case of even if it did there is no point of my knowing and hence worrying me. So it feels I have just been left to my own devices as the my AVM is untreatable. What are other people’s opinions on this matter? Just curious on what other people like myself, with an untreatable AVM, have done in this case? Thanks and any advice would be much appreciated. Paul.
Paul, I understand your frustration, I do agree with you that monitoring and keeping an eye on things just makes good common sense, even if only for piece of mind , it’s about what makes you feel better, doc doesn’t have to live with this hanging over his head while trying to move on in life, I totally agree with your feelings, mine was removed 30+ years ago but I have complications and get the same brush off from doc’s, it’s like, what do you expect, what do you want me to do about it, save your life, AGAIN ??? That’s a quote, he doesn’t even call me by name, he calls me “flatliner” I know your concerns and frustration , you can only do what you fell is best for you, get as many opinions as you can and follow your heart, wishing you the best of luck, take care my friend,
I think this is more of a psychological issue than medical if the monitoring really has no implications for treatment. I’m answering as a caregiver vs. a patient. My kid has a big nasty AVM that we treated with gamma knife over two rounds (2nd round finished nine months ago). If the AVM remains, we will not be monitoring it because he’s been through two rounds of gamma knife, and the AVM is totally unreachable from a surgery standpoint. Accordingly, our approach will be just live and find as much fun as possible, and f the AVM. There’s no upside to monitoring because no further action can be taken no matter what shows up on a scan - only stuff to worry about.
This is just our take - I can see where others would feel differently.
Paul,
My thoughts, hoping they add something.
I think if I were in your position, I’d feel the same as you. My AVM is treatable and has been treated but the docs seem convinced (so far) that they’ve got it all and therefore nothing to see further. I feel like I’m going to get the brush off from them pretty soon, a bit like you’ve had, effectively.
I do agree with DB that it is much better to put it behind you and live life to the full with it, as best you can. Within your limits. I’m absolutely sure that is the best thing to do, if you can.
I suspect the docs are being very pragmatic with you and the money available to them to treat people and deciding that the money spent on doing a scan would be better spent on someone else who they think they might actually help. I don’t know how much an MRI costs but an angiogram is pretty expensive. So whilst it is the wrong answer to you, you could see it as gifting your scan to someone else.
If you really want a scan from time to time, I’d find out how expensive it would be to do privately. I reckon an angiogram could be £5,000-£10,000. I know my combined angio and embolization was £12,000-£13,000 based on staying in for 2 subsequent days. I feel that an MRI should be much more affordable, given the fewer staff required to do the scan and write a report. Just because the NHS won’t fund you doesn’t mean you have to stop.
If you need support dealing with your AVM just being there (and we all get that) it might be that your GP can work through what other support you might get, e.g. mental health support. I know mental health sounds like a bad thing. A taboo perhaps. But mental health is exactly about how one copes with a diagnosis like this sometimes. Don’t ignore that angle. And it might be cheaper, so the NHS might fund it.
It a really difficult thing. I hope these thoughts help.
Lots of love,
Richard
Hi Paul,
I am 51 and I also have an untreatable AVM that bled 5 years ago. I have been given the same advice as you. I just had an MRI at the 5 year mark to be sure that nothing had changed, and indeed it has not. I hopefully won’t get another MRI for another 5 years.
I understand your fear and frustration. For my part, I try to focus on how I feel each day, and adjust my life and activity accordingly so as not to trigger another episode. That is my focus. I know that my AVM is there and I have to manage my life so as not to aggravate it.
It has taken me a long time to not feel fearful all of the time, but I am more accepting of my condition now perhaps because five years has passed without a second episode. I think of my AVM as a chronic illness that I have to keep in mind all the time when I choose my activities.
I hope you find peace of mind.
Best,
Anna
Find a different neurosurgeon. My daughter has an untreatable diagnosis as well. We follow it yearly.
I met with an intervential radiologist regarding my AVM. He told me it was small and probably nothing, but that he would do an angiogram. When he said it was nothing, I just shook my head and said “it’s a something”. I think I want them to find something and treat it. But after going home, I thought about. I have been living migraines for 18 years. In the last 4 years I made peace with myself and body and have been living my best life. Maybe it wouldn’t be a bad alternative to continue that…if there were no treatment options. Although like another person commented, at least do an MRI every 3-5 years.
I agree, I’m simular situation, constant, pursistant pain, more so the last 4 + years, seems to be getting worse but like you I try to deal with it, we can only do what we can do, Do what you think is best for you, follow your heart it will never fail you !! We are all different so, best of luck to you, if you find a good option please post about it, take care,
Paul:
I have not yet reached a point in my AVM journey where the doctor’s say “there is nothing else we can do”. When and if that ever happens, God help me because I think I will punch that doctor in the nose! A diagnosis like that is having your hopes and dreams crushed to bits. Please find a way to get Scans every few years. Medicines and procedures improve every day. I pray that each day, is the day, a new protocol is developed for the "nothing-more-we-can-do AVM’s. Good Bless.