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AVM Survivors Network

Davf worrying symptoms


#21

I think that sounds like a good plan Richard, changing the way we think about these things and staying positive …I’ll try and go with that! Finding it a tad difficult atm tho.
Had a telephone consultation with my neurologist on Monday, he reckons because my PT has reduced significantly (almost inaudible) then it won’t be necessary to do the embolisation! Has said he wants my hearing and eye check done and has requested another MRA.
I’m at a loss as to what to make of it all, do I push for the op or have faith in him saying I don’t need it now …he said the only reason they will do the embo is if the PT is unbearable and that it will not cure any other issues!
I’m thinking I should really get a second opinion but not sure how I go about this, any thoughts would be appreciated, thanks x


#22

Hi.

So you say you’re dealing with a neurologist rather than a neurosurgeon? I think your neurologist is no expert in AVMs and you do need to get another opinion. The point is that an AVM presents a stroke risk from a rupture. The bruit, the pulsatile tinnitus, is just a symptom of the AVM and is not really something to worry about in itself (in my view). It is the stroke risk that the AVM presents that we really want to look into.

Now, I do know that if you have a DAVF, the decision on whether to intervene is driven by certain factors (the Cognard scale) so maybe there is a lower risk of rupture from some DAVFs than some other AVMs otherwise there wouldn’t be a need to treat differently depending on that classification. So, it maybe your neurologist is telling you correctly for your DAVF.

I think if it we’re me, I’d want a conversation with your doc around the stroke risk and the Cognard classification. If you’re not happy, go back to the GP and express your concerns and ask to be referred to a neurosurgeon rather than a neurologist.

I would have to say that an embolization doesn’t necessarily fix everything. And I feel my learning over the last year is that post DAVF embolization quite a proportion of people have continuing issues with hearing and an audible pulse. However, in my book the main thing to consider sorting out is the risk of a rupture, a stroke. If my remaining symptoms are just side effects of redistributed blood flow (but are essentially “safe”) then ill just put up with them. Its just that question as to whether the symptoms indicate an abnormal flow from artery into vein that I think we all want to get resolved.

So if I were you, I would still be bothered about your neurologist’s view of your DAVF. I’d want more info or a second opinion, yes.

Hope this helps.

Richard


#23

Sorry Richard my mistake, I just checked and he is a neurosurgeon, reassuring I guess. I’m seeing my GP tomorrow so will tell her about the other symptoms (as I’ve been told they’re not related to the fistula) and ask if she can clarify any risk of stroke or bled with the consultant.
I’m with you on that one, I think we can live with minimal symptoms if we know that there are no risks.
I hope you continue to feel well, thanks for the info x


#24

Wendawes,

I relate to everything you have written. Over the past few months, really over 2.5 years I share your story. I had an embolization in June, 2018. The process was much easier than I had expected… I was home the next day, feeling so blessed… and within a week was back at work. Very little pain for me… I even had ice cream on the way home from the hospital! I did sleep and rest a lot the week I was home from work… that really helped me. Know I will be praying for you, this process has taught me so much. JoJo


#25

Thanks for your message, where abouts was your DAVF and what grade was it, did you have all the symptoms I am experiencing prior to the embolisation?
I’m so happy for you that you feel good and were able to return to work so quickly after the op.
Look after yourself and stay well x


#26

@Wendawes

@irelandchris1 has prompted me to re-think about my post above. Plus, my wife was asking about me this morning and having explained to her how I am at the moment, then reading Chris’s post, I thought I should change my vote slightly on how bothered I was earlier in the week.

I’ve read the Cognard scale again this morning. I think the top of your post says you’ve got a IIa and a smaller one near your ear. Chris is obviously being told he’s got a I. You’ve both had doctors saying that the only reason for embolising would be to get rid of the pulsatile tinnitus, whereas my doctor was telling me that his aim was to reduce my stroke risk, hence I was more bullish earlier in the week. I think I had a IIa+b.

If you guys have got a Cognard I or IIa, the advice is that these have a very low risk of rupture, so the main reason for having an op would really be to get rid of the pesky pulsatile tinnitus, rather than really focussing on a stroke risk, because the stroke risk in these is low. However, having an embolization would reduce any stroke risk. It’s just that the doc is saying your stroke risk is already really low.

There are risks associated with an embolisation… primarily that a blob of glue detaches from the catheter at the wrong moments and scootles round and blocks something unintended.

So I think your neuro is saying (in his or her opinion) that having an embo wouldn’t have a significant impact on your stroke risk (it’s already really low) so doing the op would be only to sort out the PT. And I think they might also be saying that to do the op is about as dangerous as leaving be. You can also tear an artery with the catheter.

Does that make sense?

So having got all hot under the collar about a ridiculous diagnosis earlier in the week, I think I was wrong and in explaining my current situation to my wife and reading Chris’s post, I’ve realised why.

If any of this doesn’t make sense, do tell me.

Wishing you both the very best,

Richard


#27

yes Richard thats spot on what you say. the main reason for embolization I was told would be just to cure the pulsatile tinnitus not because of having a high risk of hemorage (mine is type 1 so states extremely low risk )

so the way forward for me they reckon is to try a masking device first to help with the PT if it doesnt help they reckon embolization is an option next year but they said I need get masking device sorted and try that for a few months first

regards
chris


#28

I had glue to close for the embolism. I had a slight headache for 2 or3 days after the procedure. My symptoms were gone before the procedure and at first they thought the fistula had we routed itself. I thought I had been healed. After they did another MRA it showed that it was still there and had started to bleed into the brain Yes it is a great relief for all that to be over.


#29

That’s amazing news! How are you feeling now, have all your symtoms gone? Look after yourself x