Frameless Leksell Icon Gamma Knife at the Cleveland Clinic

Hello, I am new to the site. I was diagnosed with a grade 2 AVM on the right side of my head in the temporal region from a CAT scan. It was incidental, after an accident. I have an MRI and cerebral angiogram scheduled soon but the surgical doctor (Bain) already told me he recommends traditional surgery due to the delay time of radiosurgery. I think I would prefer radiosurgery unless the doctor(s) talk me out of it after the MRI/angio.

Has anyone utilized the frameless, thermoplastic mask, Gamma Knife at Cleveland Clinic (in Ohio, not Florida)? I guess I will find out in a couple weeks since I have an appointment with the radiology doctor (Rasmussen) scheduled. But I was curious if they are pushing the frame based system for accuracy. I know Cyber Knife is frameless but the Clinic does not have one. University Hospital does but I have been working with the Clinic so far.

If the frame is really necessary for accuracy I suppose I could handle it for one day. But I would like to avoid it for obvious reasons.

Hi @NEO

Welcome to AVM survivors! It’s great you found us. We do have a couple of members who used a frameless gamma knife (or whose relative did) and I hope they’ll offer some thoughts. Like you, I assume the frame is intended to improve accuracy and ensure good efficacy without damaging so much surrounding tissue. If you think you could put up with it, I think it is probably best.

The other question that arises from what you’ve said is that of surgery. While you (and I!) would prefer to go nowhere near surgery, it sounds like the doctor is recommending it because of the time taken for the gamma knife to work. In other words, he or she is concerned that you might have a bleed from your AVM in the 3-4 years that it would take for the gamma knife to be effective. If you’re dismissing surgery because of squeamishness (and I am with you on that, honestly) do check with the doctor why they are making the recommendation. If it is because of the risk of a bleed meanwhile, it may be sensible to grit your teeth and opt for surgery.

Welcome to a very strange and scary world. I hope we can help you be more comfortable about it all.

Very best wishes,

Richard

Thanks for the reply. If the radiosurgery doctor says the thermoplastic mask costs you 1-2mm of healthy brain tissue due to slop or movement then I could see why the head frame or halo would still be commonly used.

One question I did not think to ask the surgical doctor is if my accident last year could have been caused by the AVM. I was riding my bicycle outdoors and crashed on a fairly steep hill. I broke my shoulderblade, a few ribs, 2 vertebrae, and a couple facial fractures. I have no memory of the spill due to the concussion (I thought). My memory stops about 30 minutes prior and 90 minutes after the crash. Everything around that window of time seems pretty normal. I know there is a risk of a major AVM bleed causing stroke, etc. But am not sure if you can have a fainting spell, then feel normal a day later. Although it took me a while to heal I only spent 1 overnight in the hospital since I had a partially collapsed lung and they gave me oxygen to re-inflate it (which worked).

I have jotted down some notes to ask either or both of the doctors involved after my MRI/Angio and will ask them about fainting. By the way, both of the doctors seem to have experience in surgery and gamma knife but they decided to split their responsibilities due to the patient volume.

Sounds good if the docs you’re seeing have broad experience. I sometimes think we see neurosurgeons recommending surgery and radiotherapists recommending radiotherapy simply because you’d spend your hard-earned money with them. If they’ve got a good experience of both, they should be making the right recommendation for you rather than being seduced by income. The other route taken is embolization (I had just an embolization).

The most important thing is to get a balanced decision and a doc you’re confident in.

Best wishes,

Richard

Hi Neo,
welcome to the site. You will find a lot of good info here. I agree with some of the comments that Dick D made, you may get different opinions and for varying reasons. Some opinions simply because the doctors are recommending what tools they have access to. I had Gamma Knife treatment for my AVM Using a head frame. I got 3 opinions before making my decision on where/which procedure to have. I learned that one dr was going to use a frameless mask using Cyber Knife. Because I already educated myself on Gamma I knew an important question to ask was accuracy and risk of side effects. I was advised that the decision could be the difference of 1mm of accuracy between cyber knife and using Gamma. I chose Gamma since I was told it would be more accurate. I won’t lie, Gamma Knife isn’t a pleasant experience due to the head frame but the frameless didn’t seem all that wonderful either because it was a mask over the face that they would have shaped to my face and the mask hardens almost like a cast. When they were ready to do the treatment the mask would have went back on over my face. Neither a picnic. Somehow, like many of us, you will find the strength to power through whatever option you feel is best for you. My recommendation is to get multiple opinions and ask lots of questions. I wish you lots of strength and courage whatever decision you make along with a positive outcome.

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Thanks for the accuracy comments. I have seen some academic papers that seem to agree with what you said. But most of the medical center websites are very vague. I will meet with the radiology doctor next week and see what he says. Cleveland Clinic has access to Gamma Knife with head frame or frameless. University Hospital has a Cyber Knife and an older style Gamma Knife I believe. They probably have no reason to buy the newest frameless GK if they own a CK.

I had gamma knife in 2016, with the head frame. The head frame was uncomfortable but once secured it wasn’t bad. I had it on for about 5 hours. They mounted it, I had a CT and an MRI and then Gamma. As soon as Gamma was done , off it came. There were 4 of us that day, and one patient received some sedative via IV to help manage. I had come to peace with the decision and was really just happy to get on with it, and start the clock to the obliteration goal. I did not have the Frameless option, so easy for me to decide. Take Care, John.

I might be making too much of the frame issue. I was turned off by some reports of people spending 13 hours in the frame due to delays with scans and treatment planning. I would probably end up with 2 small dot scars on my forehead but I already have plenty of scars so maybe that doesn’t matter either.

I had MRI and Angio yesterday without too much trouble. The MRI was moderately noisy but I wore ear plugs and they crammed foam pillows next to my head to help keep it still so there was no need (or room) for hearing muffs. The resulting noise level wasn’t any worse than mowing the lawn with ear plugs in and hearing muffs on.

There was an unexpected delay in between the MRI and Angiogram due to emergency patients bumping the rest of us down the list. Maybe cardiac problems? They were able to do the angiogram in my wrist although they prep your groin area in advance in case they get jammed up and need to make a quick switch on the fly. There was a little pressure and discomfort in my arm from the sleeve and catheter. but with light anesthesia + local it was maybe 1 or 2 on a scale of 10. I could see the computer screens out of the corner of my eye. They let me see the semi-rigid sleeve they poked me with and the more flexible catheter tube afterwards. They put an inflatable wrist band air bladder over the tiny hole afterwards. The nurses in recovery have a syringe gadget that they use later to bleed off the air in several steps over the next 30-60 minutes. I’m not sure if they have any thing smart if they need to use your groin. Maybe they have to stand there and lean on it for a while.

BTW, they also incidentally found a small arachnoid cyst but I hope that is something to be ignored, not treated. I will ask the doc at my next appointment. A quick web search says these are fluid filled sacks that can be nothing if they don’t change or could cause issues if they are large and pressing on an optical nerve, etc.

Yep! That’s what they do! And honestly, it’s the most uncomfortable bit about the whole thing! Ouch! I’d forgotten about that for a while.

But honestly, it’s nothing really.

I’ve had three angios, all in the all accessed at the groin, twice with a product called an angio plug, but a fair bit of pressure is used. The first one was no angio plug but it was when I was in with my bleed and don’t remember anything. I found the MRI rally loud, I’ve had I think 5 of those. I can happily and easily prove a brain is in there for those who think otherwise!

Once the frame is on, it is not bad. Great to look at all the options, and great to have options! Take Care, John.

I spoke with the Radiology doctor yesterday. He had my MRI and Angiogram results and thinks radiation is a reasonable choice as opposed to surgery. He wasn’t worried about the incidental finding of an arachnoid cyst. It’s not causing any problems and it does not make sense to mess with it.

Unfortunately, he only does Gamma Knife with the halo/head frame on AVM’s. He didn’t elaborate too much on why although I asked him twice about using the thermoplastic mask since they have the Leksell Icon machine that allows this option. I think the mask is reserved for cancer patients who need their radiation broken into 10 doses or maybe it is just a marketing gimmick.

I am going to try to speak with someone at University Hospital which is the other large medical group in Cleveland. They have a CyberKnife unit but I won’t be surprised if it is off limits for AVM’s. Or maybe just another marketing gimmick to get people into the hospital.

Both doctors I spoke with think it is wise to do something about my AVM before it decides to act up. I am somewhat fortunate I have a grade 1 in a non-eloquent area near the skull. If I understand the angio report correctly the draining vein is more superficial as opposed to deep in the brain. I think if it was deep it would have bumped me up to a grade 2.

Its great to be able to get the second opinion, that’s for sure. Gamma Knife has a really high obliteration rate on the smaller AVMs. Mine was a grade 1 in size but the location made it a 2. Sounds like you’re certainly on a good track to get to a decision you’re comfortable with. Take Care, John.

Some people have had cyber knife for an AVM but I think usually young people, with a view to reducing overall radiation impact on an early life.