I am currently trying to find a neurosurgeon I trust and am in the investigation process of deciding which path to take. I have had 2 seizures this year (one month apart, now taking seizure medications) and have differing opinions of what my brain lesion is. Some say it is an AVM, Occult Vascular Lesion, or a brain tumor. The neurosurgeons that believe the lesion is a tumor want to remove it in the very near future because the 2017 vs 2019 Brain MRI shows (what they believe to be) growth.
Other neurosurgeons say to just watch it and continue taking seizure medications. The lesion is in my left frontal lobe and partially includes my speech (brocas) area so if we do proceed with surgery they will only remove what doesn’t completely stop my speech. I am conflicted because I don’t want to possibly become a vegetable post surgery, but if they only remove partial of the tumor then we would be doing the same thing pre surgery as we would be post surgery… AKA: keep a watch with Brain MRI’s and make sure nothing is growing more.
I have a wonderful husband, a 15 month old baby, and I work full time. I love being a mom. My husband and I have a strong desire to grow our family, but don’t want to have a seizure while I’m pregnant. Also, one cannot have MRI contrast while pregnant which means if we choose to just watch the lesion then everything has to be timed out appropriately.
Trying to see if anyone else on this site has had an experience of neurosurgeons not being able to 100% tell what their “brain lesion” is and what they did to proceed with treatment. Thank you for caring and taking the time to help.
Welcome to our community. You will find a wide variety of experiences dealing with AVM’s here. I has an AVM deep in my left temporal which ruptured, and ultimately ended up having gamma knife, I found out this year that it is now gone.
Have you had an angiogram? I have had three since my journey began, with the last being the confirmation of obliteration. If the medical side is not clear on what it is AVM vs tumor I would certainly seek another opinion. The angio is the “test” for AVMs as it clearly shows the vessel configuration. I would specifically ask the question about angio as in my experience that will help clear up doubt. Once again, welcome and take care, John.
I’m sorry to say that the ‘having two conflicting neuro opinions’ is not uncommon and nor is the ‘Wait and Watch’. I have been in both of these positions myself. I find it a little disconcerting that they are unable (or unwilling) to provide you with a firm diagnosis. I would think that would need to be confirmed prior to any planned surgery.
Neurosurgery is a major assault on the brain, it should not be undertaken lightly and this is a big part of the ‘Wait and Watch’ theory. If there is no deterioration while waiting then surgery may not be required. Symptoms ‘may’ be managed with medications or other alternatives. Some dr’s like to investigate every other option before neurosurgery.
“I don’t want to possibly become a vegetable post surgery…” And this was a HUGE fear I had when I had the craniotomy. That fear is normal. Now this may sound cold, but it’s not supposed too: I had to get to a point where I accepted that I had NO control (and for a control freak like me, that wasn’t easy) I had to hand ALL of that control to the medical team. They made a plan, they explained the plan, they explained the risks, they answered (some of) my questions, but from there they had total control.
My suggestion here is that you Need a diagnosis. How can a treatment plan be made when it hasn’t been defined what they are treating? You may need further scans be that MRI with and without contrast and/or (as JD suggests) an angiogram to try and obtain a confirmed diagnosis.
Hope it helps
Merl from the Moderator Support Team
Welcome to AVM Survivors!
I have to agree with the guys: getting a sure diagnosis before anyone goes in there feels the best step to take and if your doctors are 50:50 between do-something and watch-and-wait then you shouldn’t feel the need to rush to surgery. This stuff is serious but not necessarily urgent, immediate, so don’t feel pressured into action.
I agree that an angiogram is probably the right step to take to get a great view of what is going on, so discuss that with your neurosurgeon.
Once you’ve got good imagery, one of the things you could consider is to get a neurosurgery second opinion from places like Mayo Clinic or Barrow, as they offer second opinions on medical notes and imagery remotely – you don’t have to travel to go and see them. Last time I looked, the cost was circa $200: might be a bit more; might be a bit less but both have world-class neurosurgery practices. Barrow is in Phoenix AZ, so out of state but not a million miles away.
Very best wishes,
I highly considered having an interventional radiography angiogram procedure, but opted with CT Angiogram instead because 1. less invasive 2. at the time I was nursing my baby and the CTA would not interrupt nursing for as long 3. my neurosurgeon, a tumor board, and many radiologists are certain it is a tumor and not a type of AVM so thought a Brain CT Angiogram would be sufficient. The CTA test did not show any AVM. The 3 Neurosurgeons that believe it is a brain tumor recommend removal in the near future before it further grows into my speech area. The one Neurosurgeon that recommends no surgery and follow up Brain MRI’s w/ & w/o contrast (which I have had in the past) bets that it is an occult vascular lesion (meaning that it is so small you cannot see it on imaging tests so the interventional angiogram would not be beneficial). However I will discuss that further with the neurosurgeons I am seeing, thank you for the recommendation! What type of AVM did you have?
Thank you for the suggestion Yes, this is another hold back on surgery. I have had 4 brain MRI’s w/ and w/o contrast as we first found this brain lesion in 2015, then had follow up scans in 2016, 2017, and now 2019. The 2017 vs 2019 show what some believe to be growth resembling a tumor but with a differing report of possibly being a vascular lesion. The 3 out of the 4 neurosurgeons I have seen now are most certain that it is a brain tumor (benign most likely) and recommend surgery in the near future. The 1 neurosurgeon that does not recommend surgery thinks it might be an occult vascular lesion (meaning it cannot be seen on imaging tests due to it being so small, aka the interventional angiogram would do me no good). Has anyone had experience with “occult vascular lesions”? Were they able to see them on an interventional angiogram procedure?
Thank you, I agree I’m trying to do all the research before diving into anything. I did not know the Mayo Clinic or Barrow offers that service. I will definitely look into that option. I have had a CT angiogram performed with negative results of it being an AVM, however 1 out of the 4 neurosurgeons I have seen now believes that it might be an occult vascular lesion meaning it is too small to see on imaging. However, I will definitely discuss with my neurosurgeons if getting the more invasive interventional angiogram procedure done would be beneficial. Thank you!
It sounds like you’re doing plenty of looking before leaping, so that’s great.
I can’t say I remember reading of occult vascular lesions before, so not very common (or, more likely, not often found!) There are some other stories here but they are all very old – 2012 to 2016 – so I would not really expect the authors still to be active on the site.
Very best wishes,
I had a Grade II AVM on my left temporal. It was small but on the inside and would have been difficult to get at so went with Gamma Knife. I’ve been given the all clear so things worked out well for me. Take Care, John.