Hello everyone, new to the community

Hi there @govanjoo,

Welcome to our wonderful community :raising_hand_woman:

Damn that is a long journey to getting diagnosed. I got the whole “its stress, nothing to be concerned about” thing when I complained about my migraines too :roll_eyes: so glad you finally have that long awaited affirmation that you weren’t overthinking things and have that “aha” moment when everything adds up. Obviously not glad you got diagnosed with an AVM but glad you did before a rupture and can finally seek potential treatment options :raised_hands:

I’ve done some searching around online, potentially the glaucoma is connected but I can’t seem to find any relevant articles/sites that connect the two. Mostly it looks like this location usually has no symptoms if there are then: migraines, hearing issues or facial sensitivity changes. Then again every AVM is unique in size, exact location. Would be great if you could have both treated together as Richard said!

In terms of what to expect going forward - id expect you will most likely be sent for an angiogram after your CT scan. Unless they go for combined angiogram followed by treatment if they are already confident of what treatment is best for you.

These scans will then be analysed in depth by a team of specialists which specialise in the differant treatment options for AVMs: craniotomy, embolisation (the gluing procedure you described), Gamma knife or sometimes cyberknife surgery. They will then decide the best option/s for treatment. They may access whether the risks outweigh the benefits of any treatment and offer to monitor your AVM instead. You will then have a meeting and discuss the options, be able to ask questions and have your case explained to you indepth.

Remember that they will not put a treatment as an option for you if they beleived the risks outweighed the benefits and they will be upfront about risks. These specialists train for many years rigerously to be able to be put in this position to decide what they believe is best action to take and treat you. Regardless you will have the final say.

For example for me, craniotomy was never an option. I was told bluntly by two neurosurgeons specialised in Neurovascular conditions that I will 100% come out of a craniotomy with total right visual loss in both eyes not even considering high risk of other deficits - I have a deep set left occipital lobe AVM (sight centre of the brain). Embolisation was the only option offered to me.

If you feel unsure about your treatment options offered: there is always also the option to get more than one opinion, from neurosurgeons or neuro-radiologists who are experienced in treating AVMs.

For now, I would try to leave the worrying to the specialists - easier said than done I know. For me when I was diagnosed back in may 2017 - my main two responses were to get as much information as possible reading about others experiences to prepare and inform myself and to nag nag nag at the hospital to move my appointments forward. For some looking online and reading others experiences with AVMs in the same location helped calm them, others see “ignorance as bliss” and chose not to go into things in too much depth.

I would however regardless of which approach helps you cope best - prepare and write down questions for meetings with your consultant and for when you have the meeting discussing your treatment options. Here is a useful link with suggestions of questions to ask:

http://www.avmsurvivors.org/t/questions-for-your-neurosurgeon-brain-and-spine-avms/14806?u=corrine

Other than that, I’d say just keep very transparent about any changes in symptoms or concerns with your consultant and doc. As much as you can be rest assured that they do have your best interests at heart - it is important sometimes for us AVMers to self-advocate and push to get our dates pushed forward. Until they fully assess our unruptured AVM, they may not be so urgent to get things moving forward too quickly. But you know deep down how you feel.

I did a lot of pushing to get my angiogram moved forward. Once my angiogram had finally been done, then they finally saw what all my fuss was about. I had my first treatment scheduled two months following the angio and this is on NHS so very quick considering. They had internal meetings then two national meetings across the UK to discuss my incredibly rare case and find the best neuro-radiologist willing to take on my case within this time. So they do act quickly and seriously if they realise your case is a concern, but sometimes we do have to push for them to reach that point.

The only other advice I have is: try to keep low stress, keep your blood pressure down. I have found another useful link with advice on this:

http://www.avmsurvivors.org/t/how-to-keep-your-blood-pressure-low/16424?u=corrine

I would add to this, even if it’s embarassing, straining is also one to avoid, so try to avoid constipation if possible.

Hope this helps and that I havent overdone it!

Please do keep us informed on how you get on. Never hesitate to reach out for support, ask questions or for experiences - we are all here to help :smile: If you do struggle with this all, I do highly recommend Cognitive Behavioural Therapy which helped me tonnes.

Best wishes,

Corrine