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AVM Survivors Network

Newbie with a DAVF


#41

Hi sorry for the latest reply ever!

Been a stressful time on this end.

I still have heard nothing about what the plan could be. I have a feeling they are doing the national meetings they did to decide what to do the first time round though.

I have however gone to the vision rehabilitation centre! they found my visual processing is good. They gave me the visual field test used to decide whether I could drive - failed that one but not really a suprise tbh. I asked about prism glasses but I was told that they would not be useful for my case.

Finally been convinced to get a signalling stick which has been useful and was giving a website with excersizes for making my eye movements more efficient.

I told the neurologist about the neuro-radiologist I talked to about my angiogram results. He understood what he was saying about the SRS or embolisation options being unlikely to fully remove my AVM since he had looked at my angiogram scans himself. He said in his opinion, if it turns out that a craniotomy is the only option that will fully remove my AVM - he would personally choose it over not taking treatment. A bleed would risk my life. A craniotomy would cause further vision loss but alot less risk of death in his opinion and the AVM is only located in the occipital lobe and no other part of the brain (so considerably little risk of any other deficit than vision loss).

I asked him what my vision would be like if I lost the brain covered by my AVM. He said it would be the same as it was right after my embolisation. This has really eased my mind - okay it wasn’t great but I could read, see full faces, and my walk around with the occupational therapist was doable.

Ofcourse this is only his take on things but we will see when I finally get a date for a MDT meeting!

Ontop of this, university took alot of time to sort out my degree so I missed out on this years intake for the grad scheme I was offered. Paperwork has been sorted out for me to start next Septembers graduate intake. I have been looking for a job for the mean time so I can finally move out since family life at home has been difficult.

How are you getting on? I’m glad you being back at work has been going well and your feeling good in yourself :relieved: Definently more than 12 hours would be a push for most people let alone with a recovering brain, your doing awesome :raised_hands: !!

Have you had that follow up MRI and get the results?

Corrine


#42

No worries Corrine! Glad to hear that your visual processing is good - sorry to hear that Gamma isn’t an option. One of the first questions I asked post diagnosis was about Gamma, and similarly it was ruled out for me.

Whilst a Craniotomy may be scary there are a few positive stories I’ve read on here, so if that’s the route you go down at least you know that by doing so it’ll be with the intention of occluding the AVM.

Good job on the grad scheme, I’m sure it’ll come around in no time at all. I’m fine, back to normal really I suppose - I have an MRI/MRA in a weeks time - next Friday - and then a consultation with neurosurgeon on 1st December as a follow-up post embolisation. I’m obviously hoping that everything looks good, I’m not sure whether I’ll also need an angiogram or not - from my research it seems to be advisable to have one 3-6months post-procedure to be 100% sure as I suppose the MRI/MRA is just indicative. :slight_smile:


#43

Just to update, I had my consultation yesterday. Was given the all clear, fistula looks to be entirely occluded. Found out they used a combination of Onyx and a coil as well.

Neurosurgeon was surprised that I’m generally fine and symptom free, thought I’d be having some issues maybe due to the severity of the fistula. He said he’d spoke to the neuroradiologist who said it was quite a big procedure (especially relative to what their expectation was). Main thing is I feel fine though.

Been told to move on, though they’d like to do 1 more angiogram to be sure in February/March next year. Pretty pleased, and very lucky!


#44

Fantastic!

I do think moving on is excellent advice, too.

Very best wishes

Richard


#45

This is amazing news!

I’m glad you can now look ahead and move forward with your AVM fully treated! :relieved: and so happy that you are feeling good and are symptom free after your big op :muscle:

Best wishes,

Corrine