Thanks Mike, you really have some good postings, you show a lot of
strength and courage with your inspiring message, what a great attitude,
you have been thru a lot and we are so glad to have you here,
Kell,
Hi. Welcome to the site! I’m in a similar position to you, though not the same. I’m happy to share thoughts with you on how I’ve approached my treatment, in case they are of help…
My AVM is a Dural AVM or AVF (different doctors have used each term, though I guess I may have features of both perhaps) in my right occipital, reaching round past at least my right ear and it feels to me as if it is busy growing. My MRI made reference to at least a couple of significant draining veins and a possible thrombus in my right transverse sinus. I’ve not had any seizures or stroke yet and my worst symptom is I am getting increasing head pressure and dizziness. I’ve clearly got some “reflux” going on from those draining veins inflating everything in the area. I can even feel my pulse over the the outside of my head. I’m pretty sure I need fixing but in the UK, treatment on the national health service is free but v slow. I’m on a waiting list for treatment in March or April time; I’ve been waiting since November.
The key I think to your diagnosis will be how complex or involved or large your AVM is. From what I understand, if it is a fistula with a knot of very small vessels or capillaries, stereotactic radiotherapy (gamma knife or other such therapies) is perhaps feasible. If it is a relatively discrete AVM with a few connections artery to vein (I guess large enough and few enough to get a catheter into) then a catheter embolisation procedure might be the right thing to do. Otherwise it is more in the field of a craniotomy.
Interestingly, different specialisms do each procedure, so the best way to get to a decision is for a multidisciplinary assessment. I’m not sure whether this sort of activity is commonplace in the US but it is the means by which my neurosurgeon and interventional radiologist determined a course of action for me. I’m sure we really need to look to the professionals to make a recommendation (and explain why it is the right thing to do).
For my own opinion… if I had had a seizure and it had been traced back to an AVM, I’d be OK with sorting it out with radiology or an embolisation. Craniotomy seems v invasive and quite risky to me. So you need to think about your existing risk level and the operating / post op risk & success level to make a choice as well as looking to the experts for what they think is the lowest risk / best way to fix you. It may even be that the right thing to do is to use anti-seizure meds and stay away from surgery: I don’t know.
Completely happy to talk through risk percentages etc with you. Remember (I’m 50, I think you were a similar age but forgive me if I’ve got you wrong!) nobody aged 50 has a zero % risk of a stroke. From what I’ve read elsewhere, underlying risk for a woman aged about 50 is perhaps 0.2% or 0.4% each year I think rather than 3%. If the percentages are important to you, I’ll go and re-read what I found.
Hope some of this helps. Keep sharing with us and we’ll try to help.
Richard
Thank you Richard. I think I am just confused and not really sure I understand how serious this is. My last MRI confirmed there is now an aneurysm. Gamma and embolization were not an option. He suggested possible craniotomy. I’m going back in four weeks to talk more about it. What would be some good questions to ask? I’m trying to not think about it all the time but it’s hard when I can hear it constantly in my head.
Do not take one neurosurgeon’s opinion as the only one. Get a second opinion and, if necessary, travel to a city with excellent doctors. I grew up near Boston so happen to know there are AVM specialists at the Beth Israel Hospital and at the Mass General Hospital. If you do not know where some excellent AVM doctors are, just ask on this website and say where you live. You will receive many replies!
This. Believe it or not, there is a legitimate school of thought that advocates management.joii_ntervent_or conserv treat.pdf (370.5 KB)
I think having an Cerebral AVM scares us so much we rush to intervene, when that may not be necessary. Grade IV and Vs are actually very stable(fewer bleeds) according to the research. Its not an easy decision, but get as much information as possible. After my personal experience, I do believe the stereotype: surgeons like to cut or intervene!
I agree with Elizabeth, too.
There is a list of questions in the AVM 101 category which might be of use but you can also search for “questions to ask” or similar and see others lists of questions.
Don’t rush in: make sure you get more than one opinion, especially where there are significant surgical risks. At the end of the day, we are not the experts so we need to look to the doctors to give sound, honest, balanced advice. If it feels sound, honest, balanced then great. If it sounds less balanced or too easy or anything else too extreme, I would go find another opinion.
I have to say I have accepted the feedback I’ve had from my interventional radiologist as he was so deliberate, so measured in his approach I bought the whole story in one go. If I have to trust my life to someone, he gave the right degree of confidence that he was the right person for the job.
Just take it one step at a time.
Very best wishes,
Richard