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Follow up Angiogram -help!!

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Hi, I'm not sure if I should post here or in the avm section but here we are....

Three years ago I had a large avm removed and suffered an SAH during the 14 hour op. Because of the SAH I completely lost use of my left side and had to spend six months in a rehab hospital learning to use my left arm/hand/leg/foot etc again. A horrific time and one which still terrifies me today. Three years on I'm still suffering the after effects of such a huge ordeal. I can walk unaided (albeit a bit clumsily) but have v little use of my left hand and only some small use of my arm. I have many other problems due to the avm/SAH but I'm just detailing the physical problems here for purpose of this post.

After the craniotomy the hospital did a follow up angio which they were surprised was clear (the prof thought there'd be some residual avm left). Then two years later, I had an MRI with contrast dye as another check to put my mind at rest. They told me the MRI doesn't show up small parts but they were 95% sure it was gone. He slso was satisfied an angio wasnt needed. I was happy enough with that and was discharged. However, when I saw my rehab consultant (6-9 monthly check up) I told her I had been having headaches lately and had noticed again a slight noise in my right ear. The avm was originally found because of a v audible and loud whooshing noise in that ear. Because of this she referred me back to the professor who discharged me last year just to be sure.

I saw him today as a re-referral. As expected he said they would do an angio purely to put my mind at rest and also obviously to check there was no avm left. I explained I was literally terrified of an angio because of the risk of stroke but he just kind of said well its the only way you'll be satisfied.

He's right in a way; obviously I'd like to know 100% but I absolutely don't want to have another angio and risk another stroke. I am so frightened that it'll cause a stroke. I know the risk is roughly 1 in 1000 but I also know my luck and that if one persons going to have one it'll be me. The thought of going back to square one - that terrible, dark place of losing mobility and working working working constantly to get tiny parts back is too much to bare. I just can't face even a slight chance of it happening again.

The flip side is what if an angio does show up residual avm and basically it gets caught before it gets massive like the last one? Or, i don't have one and end up cap in hand back there again in ANOTHER years time? I have trouble making decisions as it is but this is even worse than usual. I feel like its a toss up between a rock and a hard place.

Does anyone have any experience and/or advice on what the best route to take is? Or helpful stats? anything! Any help would be truly appreciated.

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Hi Erin,

That Dr's response seems a little cold & lacking in empathy to say the least.

I don't know any facts or figures but I would think removing a large AVM was far more likely to cause a bleed than having an angiogram? I've had maybe 4, I really don't remember it too well. I do remember having to go for a further one after the operations & feeling very much like you do. I was really scared & also could not face the thought of it causing another bleed & trying to recover from that all over again. It had been such a long, hard road to get better and I hadn't even been as severely affected as you were by your surgery.

I think it would be fair to say that angios are not a pleasant experience but out of all of the ones I had, the final one seemed less traumatic and more interesting to be able to see the screen & actually see what was inside my head. I started calling my anni's 'the triplets' after seeing them on the screen looking like white blobs!

Without wanting to make light of your situation, the only person who can decide to go ahead or not at this point is you. Have you been advised on the statistics of having a bleed/stroke if you go ahead with the angio? Hopefully they will be low but I understand that low is not always what we want to hear. We want to hear that there is no risk whatsoever. Is there someone medical whose opinion & advice you trust that you can discuss it with?

Please try to keep in mind that if the risks are low you are no more likely to be that unlucky person than anyone else despite your previous experinces. Try to stay positive and keep the risks in perspective.

Michelle xx

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Erin, I agree with Michelle's wise words. I think often the fear of going backwards after such a long struggle to move forward is bigger than the actual risk but it's hard to persuade yourself of that. You have come a long way and its been an amazing and hard journey so well done you, im in awe of what you have done so your concern at not stepping backwards is natural but this decision and fear wont be the hardest thing youve had to face.

I remember lying on the bed before my last angio thinking ' I really don't want to do this but I have no choice' , I knew that the clarity it would gve the surgeons and consultants was the only way to really move forward to the next step of my getting better, the gateway if you like I needed proof that things were as ok as they could be.

So I Think that's what you are taking the risk for , getting greater peace of mind that things are ok but only you will know when you are ready to do that. :wink: hugs.

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Michelle and Daffodil thank you so much for taking time to reply :) You're advice makes a lot of sense and I do agree with you both. I'm starting to think after a few days now that the angio would be so beneficial for that final peace of mind so I'm slightly more open to it, but obviously still terribly scared. I'm still not sure if ill go ahead with it. I can't shake the fear of it happening again and me saying basically I knew I shouldn't of had it.

I have no one medical to talk to other than maybe my gp. Or a helpline. I may do that, I feel like I need a bit more light shed onto it. I did have an angio that was clear afterwards, so I'm thinking do I really need another one, if that was clear. I've also researched on the net and it seems that even if I do have another and it's clear, it could still show up in later years. Still working this all out! :/

Thanks again guys x

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