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AVM Survivors Network

Mixed feelings following angiogram


#1

Hi all,

I had my angiogram yesterday. Once I had finished my angiogram one of the senior neuro-radiologists came to see me who was reviewing the scans as they were being made. My neuro-radiologist is on holiday for the next two weeks so he couldn’t preform my angiogram himself. The neuro-radiologist who came to see me is more senior than my neuro-radiologist however he is less specialised in AVM’s compared (but still a valuable opinion).

The nidus of my AVM has significantly reduced aswell as the flow through it which is good. He explained my AVM as being widely dispersed, since it was large despite having a smaller nidus there are still many feeder arteries going in around the glue (so the overall AVM is not small). Just the actual volume of AVM has been significantly reduced. Over time if the AVM is not fully treated it will likely grow in size.

  • I asked him whether it could be completely treated with another (arterial) embolisation. He said the chances are very low in his opinion. There are too many feeder arteries and if they aren’t all closed off then more feeders will form.

  • There is a possibility with an alternative venous embolisation (where they glue from the vein end of the AVM) since there are fewer exiting viens than feeder arteries, it logically should be more likely to work. However this route is very cutting edge, as in there are only about 100 recorded cases of it being done so the risks+success rates aren’t very known yet. The board would unlikely accept this and I feel uneasy about it too.

  • Then his opinion on gamma knife - he said he personally doesn’t think it would be successful either. I have just so much glue that it will likely both make aiming the gk to the avm difficult and the glue surrounding the remaining AVM is also absorbent material (absorbing the radiation). He said for example Sheffield hospital (which is the UK’s specialist hospital in GK) is usually not positive about GK used on people who have had extensive embolisation glue treatment.

  • He believes if I want my AVM completely eliminated forever, the only 100% option is craniotomy. He thinks since it is smaller, lower flow, more stable it should be alot more safely treatable. However he has said he’s not sure whether any neurosurgeon would touch it considering the location.

I am staying mindful that this is not a conclusive opinion: my neuro-radiologist and the board may have a totally differant opinion. I am not worrying but I do feel bummed out. Not what I wanted to hear.

Has anyone been told something similar who has had their AVM partially treated?

Side note: OMG did my angiogram hurt entering my groin. There was so much scaring on my artery upon entering after all the digging around in there that it felt like I was being stabbed the first two attempts to enter until I got a third shot of Local anaesthetic -shivers- they will need to take me kicking and screaming for future angios if I’m not under General. It still aches and its all swollen on my groin. Had no issues with pain the first time!

Thanks for reading,

Lots of Love

Corrine


10% of my AVM remains
#2

Corinne, certainly frustrating news to hear, it will interesting to see what your neuro-radiologist’s opinion is and go from there. Likely some careful consideration will be needed, and as you do, well thought out. Also ouch on the angio! It sounds like they didn’t manage the medication as well as they could have, it is certainly one of those procedures that shouldn’t hurt. Take care, John


#3

@corrine those darn angios do so hurt the groin. Hopefully next time they can give you a stronger numbing or more - my nurse said ice just for 24 hrs then heat on the area.

Also when you reg dr comes back from vacation- since he has more experience hopefully he will have better news for you.

Between my 2012 and 2015 angio/ embolisms a miracle happened and my body sealed many of my feeders - it’s rare but can happen.
I still have one they can’t reach .

Keep us updated :two_hearts:

Hugs
Angela


#4

Hey Corrine. So sorry about the angiogram and the news. Although I would definitely refer you back to your doctors, I would suggest also possibly a second opinion. Not that you need the angiogram done again but there may be other treatment options. For me, it was gamma knife for two of my avm in my head, one was gotten with a craniotomy. Now I am not suggesting one or the other. I do know, having gone through both, a craniotomy is a much more involved surgery. You definitely want to discuss with your treatment staff the risks, benefits, and costs for all procedures. I hope all going well with you. And again, I say this as someone who has been through both and definitely prefer the gamma knife but wanted the AVM eradicated so I ended up getting a cranie.


#5

Corrine,

If you want to look into a venous embolization, I’d say talk to my consultant interventional radiologist. I believe he is absolutely a leader in the field and mentioned he might fix me by approaching via venous side as well as arterial side, so I think quite comfortable with the idea of taking that route. Plus, I came away with holes in both legs, so may have even used both sides.

I agree, not the answer you were looking for and sounds like you had a bad day overall :frowning:

Maybe see if your original doctor and ask him to review the results from this week, too. Ignore the seniority bit and just see if he agrees?

Wishing you the best always,

Richard


#6

Thankyou for all your replies and comforting words :heart:

@JD12 @Angela4 Fingers crossed :crossed_fingers: I hope to have a differant opinion on my angiogram scans but we will see! Atleast I now feel well prepared for whatever outcome my neuro-radiologist and the board come with :muscle:

Definently they should have considered the fact that I had a complex embolisation which clearly made alot of scar tissue so would inevitably require most local anaesthetic :roll_eyes: but these things happen!

@Paul_McMonagle yes a craniotomy does spear to be very much more intense than the other treatment opinions. I would have been 100% up for it earlier last year. Having been unemployed and back at my parents home for over a year - I feel desperate to work/regain my independence and a craniotomy has a much longer recovery time than the other options. Also since I have already lost so much vision, losing more would significantly affect my life. Hopefully it does not come to needing a craniotomy but we will have to see. I definently also want my AVM 100% gone too that is for sure.

@DickD hmm you have a good point. The senior neuro-radiologist I had talked to did say although it is cutting edge he’s been specialising in venous embolisation over the past few years as its his main interest. If you have the name of your neuro-radiologist I would also like to mention him/her too if the treatment comes up as an option. I guess the “newness” kind of freaks me out but I know it makes sense that it’s not all that differant to the standard embolisation procedure. If I only get offered craniotomy I could also look for a opinion from your neuro-radiologist. I do hope the get a second opinion from Sheffield before making a decision about GK.

Lots of love and best wishes

Corrine


#7

Sorry about the angio being so uncomfortable, however I hope everything else works out for you in the future… I hope that the person you spoke with has got it wrong and you are able to treat this AVM as easy as possible… please keep us posted on your journey… God bless!


#8

I also am having mixed feelings after an angiogram yesterday ~ 9 years after my AVM leaked and 2 gamma knifes, my AVM is still alive and not shrinking. I have continuos headaches and recently started leaving work at 3Pm due to not being able to concentrate. I don’t want change the way that I feel but I feel like I have a time bomb in my head like when I first found out I had an Avm! Anyone have any suggestions on dos and donts ? I am also thinking about checking into social security dissability have any others? Thank you for your input
Don’t worry be happy


#9

Sorry to hear that Tina. We have a number of folks here who were involved in the social security disability process in the US, not sure if any others form Texas, and not sure the variance between states as I’m from north of the border. Might be worthwhile starting a thread in that regard, I’m confident several will pass along their experiences. Take Care, John.