Left Temporal Lobe Surgery - Feedback PLS

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Hi All,

I have a left temporal lobe avm (3.2 cm x 2.5 - unruptured). It has two big draining vessels and multiple feeders. No deep draining vessels. It is immediately adjacent to speech and vision fibers. I’ve spoken to a few neurosurgeons and they recommended removing it. Some recommend embo, others do not. The percentages of risk vary from 5-20% chance of issues with vision and speech/ language comprehension.

I’m having trouble committing to setting a surgery date. I have concerns with potential long term aphasia / peripheral blindness. In addition to that, other complications occurring such as bleeding during surgery, blood clots, strokes etc. Anything can happen.

Currently, the only issue I face is when I exert such as working out, shoveling snow, carry anything heavy, I end up feeling dizzy and I am unable to read and have trouble speaking a bit. They are unsure if its due to a focal seizure or if its a transient ischemic stroke. I am not on seizure meds. I was told post surgery I could begin having seizures. Anyone experience this?

For those of you who have had a left temporal lobe avm removed, could you share some of your short and long term deficits or issues you’ve had? Anything you are willing to share I would appreciate. Also, how do you commit to surgery? I feel like I could potentially make a grave error and have to live with the bad results.

Thanks in advance.

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@MikeM

What to say? What to say to help you?!

These are the questions that we all wrestle with: it’s very difficult, isn’t it?

So… I don’t want to sway you one way or the other: you’re the person who basically has to decide which set of risks you’re happiest with (this is what it boils down to: there’s risk in either action and there’s risk in inaction).

But what can I say that I hope might help?

I’m sure there’ll be a bunch of people who have had a temporal lobe AVM and either surgery or embolisation or gamma knife. Equally, I know there are people here with aphasia and people with some peripheral vision loss. They need to chip in because I seem to have got away Scot-free so far. My understanding of these things is that there is a risk you’ll come away from the op with some undesired effects, not that it is guaranteed.

If the docs are offering you either embolisation or surgery suggests that either is an option for you. Each doctor tends to have their own skillset and their own preference, so I don’t think the diversity of opinion is necessarily something to worry about. If they are giving reasoned arguments for one versus the other (and it isn’t to do with being only their skillset) then you need to understand the reasons. If there are no good reasons either way, then I think it comes down to your preference.

I was only offered embolisation for my dural AV fistula in my right occipital but if there had been a choice between surgery and embolisation, I know that for me, I’d have been happier with embolisation. But that is to do with my own comfort etc with the different procedures.

If you need a third opinion, one option could be to consult remotely with one of the major neurosurgery practices in the US, like Mayo or Barrow or Stanford. These offer a remote consult on reports and images that you submit through their portal for something of the order of $100-$400, not a prohibitively expensive thing to do. They might sway it one way or the other for you, or they may underline that either is a good option.

When daring to go for an intervention of either kind, somehow you need to balance that in your mind with the fact that doing nothing is an option but it is also not a risk-free option.

Are the dizziness effects getting more pronounced over time? This could be a reason to do something.

When I was at the same stage as you, I initially thought to myself, “When the risks of not doing something outweigh the risk of doing something, that’s the point at which to act.” but as I waited for my operation, my DAVF felt like it was developing quite quickly: I got dizzier and dizzier month by month and I quickly decided I needed action. Indeed, I hoped that by the time I got to the front of the queue, an embolisation would still be the best option to sort me out. If your AVM is busy changing, think more about action maybe; if it is stable perhaps it is ok to watch and wait for a while. I did feel that the waiting for the risks to swap places was basically kicking the can down the road but the urgency with which mine seemed to be changing became my deciding factor.

I hope me rambling like this might stir some extra thoughts that help you along the way. I might have one or two other thoughts but they aren’t walking to the front of my mind at the moment.

We are with you: we know how difficult this choice is.

Best wishes,

Richard

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Hi Mike, My AVM was in the right frontal lobe so it probably carries different risks. I wish I was a doc and could give you decent advice but that’s not the case.
I do feel there is an advantage to doing treatment while young because your body heals faster/better.
There’s a guy on here named John that started posting after he had an unexpectedly successful gamma a while back. He seemed excited and that got me excited, so all things being equal, that’s what I’d do if I had to decide today.
I had 2 craniotomies and the scar tissue has resulted in almost 50 years of seizures. Best wishes, And keep us posted please. Greg

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Hi Mike! Im a left temporal AVMer which was discovered due to a bleed, mine was quite small and on the inner side of the lobe. I had the option of surgery or gamma knife. Surgery presented a far greater risk due to the need to access it through the lobe. The bleed caused short term memory issues, aphasia but nothing related to site. I really had no effects from gamma knife, and all except a little bit of aphasia has slowly disappeared. This was in 2016, and well this year I had my first seizure…likely related but likely due to bleed damage vs gamma knife but still seeing if we can find out for sure.

For me, surgery had a far greater potential impact to vision, speech and seizure activity.

I would do the same thing again, I did not want another bleed, that is even with the recent possibly related seizure. Another opinion is always good, and Barrow, UCLA and Mayo Rochester are very well known and do the virtual opinion, as per Richard.

I always say you need to be at peace with whatever decision you make, knowing if it was the right decision is often not known until after the fact. Take Care, John

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I spoke with Barrow. They recommend embo followed by surgery. They stated Dr. Lawton would do the surgery himself. They said there would be a small chance of those issues under his hands but no guarantees which I understand. I wouldn’t go to Barrow due to how far I live from AZ and insurance issues.

One thing that I do experience upon exertion is transient ischemic attacks (strokes). During this event, I get dizzy, cant read, have trouble selecting words. Doctors are unsure if its a TIA, focal seizure or steal phenomenon. I haven’t read of anyone else having this experience.

I’m hoping others who did a craniotomy reply. I did do a search to read some of their stories but it would be nice to hear about follow ups.

Thanks JD12 and Richard for responding. Very difficult to make these decisions.

Sorry to hear about your seizures. I think you are correct in assuming its due to scar tissue. Left temporal lobes often trigger seizures unfortunately.

Are you able to work out ?

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Mike,

When you have an embolisation + surgery, the embolisation is to reduce things like blood loss during surgery. In essence, it’s a craniotomy but with actions to reduce the impact. It’s certainly a sensible option.

Whatever you’re most comfortable with / can justify to yourself as the best course to take is the key.

Best wishes,

Richard

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Mike, I can workout without restrictions, and with no issues. I work out with a high level of intensity, swim, bike, run and weights and am a bit of a workout junky. It is my brain medicine, now with Keppra added! I will say that if there is anyway to make Dr. Lawton work, from all I have seen, that would be a great opportunity if you decide that route. I am now off to a medical associated to work due to my seizure, that will be fun…Take Care, John

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I used to work out up until 3 years ago when I started having these TIA/Focal seizures / steal phenomena. Doctors say I can work out in the future. I don’t know if this issue would go away with surgery though. No one really knows.

Ultimately, I’m curious how people are doing post left temporal lobe surgery. Maybe its because I haven’t done it, but I feel like life as I know it could be ‘over’ after surgery if things go south. I’ve read stories about aphasia issues, memory, seizures, blindness, strokes, etc. As of right now I feel relatively good.

Not sure how to commit. I don’t even think anyone is truly ready to jump in to do it.

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Hi Mike, My seizures are from the scar tissue from the craniotomies. I somebody would tell me of a way to stop seizures besides meds.
You’re right, it’s all very difficult to understand. Best wishes, Greg

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Yes, I had a bleed, then 2 craniotomies and then seizures ever since. I was told the seizures are due to the scar tissue from the surgeries but I don’t think that’s 100% certain.
There’s not much certain when it comes to the brain.
Also, keep in mind my surgeries were in 1973 so technology was ancient-- no embolizations or gama knife. That probably means that you can be treated with much less scar tissue and chances of seizures. Best wishes, Greg

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Hi. My son had a large left temp/parietal AVM. 4.5 cm. So very big. Went to USC,Kaiser, Barrow, Stanford, and Emory. I’m a doc. I won’t mention which one but there was one who tried to be a cowboy and promised he could ‘take the whole thing out.’ The four others all had different opinions regarding whether to favor embolization vs surgery , etc… he eventually prepared himself and chose surgery. We spent days with makeshift glasses so he could experience what it would be like to live with right hemifield visual loss. There is no way to approximate what a disconnection syndrome feels like. He went for Angio/ embolization/ surgery approach. The surgeon came back to the recovery area afterwards and told us that they brought him back out and decided to abort the idea of surgery after the Angio. He said, if it was my child I wouldn’t have him go through the surgery.
They treated him with two courses of gamma knife. 50% chance they said. Follow up Angio- no residual. He has no follow ups scheduled and is living his life. Has occasional migraine like events but otherwise ok. I’ll forever thank the team at Emory for the decision to NOT do surgery. Sometimes it takes more courage for a surgeon not to cut. There is no right answer. There are multiple ways of approaching avm’s. Because each is unique there are never enough cases to develop a treatment protocol that is a one size fits all model. Good luck.

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They said 3 years from now? Mine said I can workout after 3 months. Sounds too soon to me.

I’m expecting the worst.

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Mike,

I think the honest answer is that you’ll feel your way through things post surgery. You’ll know what feels like a bit much and so long as you pay attention to your body, you’ll be fine. As a rule, it is better to start very light and work your way back towards what you’re used to. 3 months sounds pretty quick, I agree, but you’ll be the one in control of it: you can set the pace.

I think I played badminton about a month post op and that felt bad. I went back to the gym about 6 months post op and to some extent it felt great (but shortly afterwards I had a session when I felt noticeably dizzy again so I think I did a bit too much). Overall, I took a long time to feel well post op (best part of 2 years) but actually I’ve felt fine from that point.

For the record, I’ve had just an embolisation.

Richard

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Hi Mike,

Mine was rear occipital. The choices for me at the time were the same. They eventually realized though that embolization would not get to all of it, so they cut me open.

That’s the decision we had to make; is it less invasive to embolize and will it get results. In my case it was one doctor making recommendations. Is it two different doctors for you?

The MRI was what told the story in my case to decide what was best, so a question you may want to ask is how deep inside is the issue? Mine was too deep to embolize.

Your issue may be that you have multiple docs trying to land revenue. Are you in the U.S.?

Peter

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Yes, I am in the US. I’m not sure if surgeons get paid per procedure or if they just get an annual salary. Im guessing they get incentives to do each surgery.

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Well, I’m sure that they would doo the best, but is there an independent specialist who is impartial?

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I get the impression that surgeons in the US earn what business they bring in, so there’s a financial incentive for you to be seen by them. This is part of what makes choosing more difficult.

In the UK, it feels the other way round: surgeons are incentivised to some extent to see as many patients as they can within a fixed supply of money, so the cost to do a gamma knife may well be much cheaper than embolisation which must be cheaper than craniotomy, so there may be a bit more incentive to go towards these treatments.

Which is the better incentive is an interesting question.

I would add that in the UK, brain surgery clinical decisions are usually conducted in a multidisciplinary meeting, where each of the options is considered. Interventional radiologists are present in the room with the neurosurgeon and others and the line of treatment that best suits the patient (and perhaps the budget :thinking:) agreed.

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Hi Mike. Me too. Mine was zapped with Gammaknife roughly 5 years ago… 3 doses. Scar tissue and a seizure disorder remain. All of your concerns are legit. Whatever treatment plan you choose however, it will be one step at a time and your positivity will make a monster difference in what is possible in your life. All my opinion of course and we are all different. I wish you all the best moving forward…b

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Hello…welcome to the club…I was 48 when I had a massive AVM BLEED…3.2 in size and what a shock….I’m now 71 and in great health…THANK GOD…I had 11 hours of embolizations in two days then a craniotomy a day later…I don’t know where your from but DR. PHIL STEIG did the surgery in BOSTON…he’s now head of NEUROLOGY IN NYC at NEW YORK PRESBYTARION…one of the best in the world…my prayers are with you

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WEILL CORNELL AT PRES.HOSPital…