I think it might be back

Hi all, new member here. Well, I thought I was done with all of this AVM (insert expletive of your choice.)

I was diagnosed with a large L parietal AVM in 1997 after a generalized seizure. Had embolization (coils) and SRS within the month and came out in perfect health. Three years later an angiogram showed complete obliteration. Still in perfect health.

In 2003, while I was in nursing school, I began to have some cognitive issues. Short term memory, disorganization, and what I can only describe as a serious case of ADD. So, the MSN was out of the picture.

Cognitive abilities have stabilized at about 80% of previous abilities, and I make do ok. Over the last three years my right leg has been becoming weaker and my balance has become quite poor. I now have to use a staff while walking much of the time. (Much more stylish than a cane.)

I saw my neuro twice. The first time he thought it was a pinched cervical nerve. Went back a couple of weeks ago and the doc ordered an MRI and an MRA. Results were inconclusive, so a standard angiogram has been ordered. Waiting for a slot as I write.

I'm trying to convince myself that this isn't that big of a deal, but I'd be lying. The only reason I can think of to need an angiogram after an MRA is to make a definitive diagnosis of a recurring AVM. I know this is rare, but it happens. MRI shows no necrosis or mass effect.

Have any of you been in a situation like this? What were the outcome?

I know I'm putting the cart before the horse, but, as Tom Petty so appropriately sang, waiting is the hardest part.

Flaco ive lost count how many times ive felt like my AVM may have returned and my symptoms have been terrible to say the least. As a matter of fact i only went through this recently and after an MRI etc and tests i have come up clear SO PLEASE...be positive and know they are doing this as a precaution and so you can also have piece of mind...out of curiosity how old were you when diagnosed and removed?, its been 4 years since mine was removed via surgery...God bless!

What Adrian wrote to you is helpful...I am sure.
Waiting is the hardest part all right, but sometimes it turns out
that what we are waiting for is not as bad as what we most fear.

Thank you, Adrian. I was diagnosed and treated at the age of 28. I'm now 47. I'm not new to this, and I'm neither positive nor negative about it. It is what it is, and I do what I need to do to stay alive and well for a while longer. I don't give up, which may be seen as positivity.

I would expect you to have some symptoms four years after a resection. I went through the whole MRI/angiogram/MRI/angiogram thing in the late '90s, and all went as planned. 18 years later, new symptoms are not good. Something's going on in there.

Thanks again for your kind words.


Thanks John. The funny thing is that I'm not afraid, I just want to know what's going on up there. Once I get a diagnosis I can make a plan and see it through. I've done it before, and I can do it again.

My AVF was discovered by my neurologist as a “spot” on my brain that he saw thru MRIs with and without contrast. After monitoring it for about 1-1 1/2 years he referred me to Emory for a second opinion. The neurosurgeon said he couldn’t really tell anything by the MRIs, and ordered an angiogram which I had done 2 days later. That’s when they discovered I had the highest risk AVF and we scheduled a fix with Onyx/glue-like substance to seal it off.

If a followup Angie is suggested, I would totally do it. That’s when thy found out my AVF was coming back and I had to have a craniotomy to remove it.

No problem Flaco...im confident you are just fine...keep us posted...God bless!