Dr recommends gammaknife. . no angio done yet

General
1

Hi. I have an unruptured AVM in the right parietal lobe, 2cmx3cm.Just found it Nov 28th. I am being treated at Mayo Clinic, Rochester MN. So far, I have met with a neurologist and today with the neurosurgeon. Based off my MRI's the surgeon said I am a good candidate for surgery or gammknife. He highly recommended gamma. He does not think I need an angio right now; he said that we will do one before the gamma and that there is a small chance that when we do the angio (day of gamma) that he would find something more, and we would have to scrap the gamma treatment. He set me up to meet with the radiologist tomorrow, although my gammaknife appointment won't be for a month or so.

Does this sound right? It makes sense to not do two angios, but I thought they had to do an angio to know more about the AVM. I guess I was planning on getting an angio to better understand treatment options. I am seeing some of the top AVM DR's so I want to trust that what they recommend is best.

ideas? thanks!

2

Nothing you've stated flags me as being 'bad'.

It can save you one angio by doing the angio, then the gamma. If they do gamma and/or embolizations, the size of the AVM should decrease. Also with gamma, the vessel walls get tougher, reducing the chance of a bleed. If/when the AVM is smaller, surgery can remove the remainder if required.

If you haven't done so, write out all the questions you have and have your team (a nurse in their office could answer most general questions) answer them. It's not too much to ask and it IS your head they want to mess with.

Best wishes,

Ron, KS

3

Thanks, Ron. Everything you said makes sense--I really like the idea of the vessel walls thickening ;-)

I'm just worried about getting the halo on, then getting the angio. . . what if the AVM is more extensive than the MRI shows? I would hate to get the halo for nothing. And I just don't understand how they know for sure that gamma is the best treatment without doing an angio first to get a clearer picture. The dr indicated that he could tell by the MRI. He also e-mailed my MRI to another DR that specializes in AVM's and he agreed that gamma would be ideal and that I didn't need an angio until the day of gamma.

4

I kind of agree with you Nina. I'm confused about how they can come up with your best "plan" without an angiogram to really know the exact location, size, shape, drainage, etc. that the AVM has. ??? I know with my son's AVM, that one of the things they needed to determine was how many feeding arteries it had and they found that out with the angiogram. Plus he had one part of his AVM that was very deep seated so that made surgery much more risky. And I agree that to get the halo put on and then not have the gamma, just seems really horrible! Plus mentally, you need to know what is going to be done! It's hard enough to go thru with any treatment but to not really know would make it more difficult and stressful. And it seems from all I have read that almost everyone has an angiogram before treatment is decided.

That's a tough one for you to be in this position. BUT if you are questioning it, then you just have to ask and get clarification. I know that can sometimes be hard to do but even if you have to get a second opinion, then do it. Most important thing is that your 'gut feeling' about your treatment choice has to be very strong. Keep us posted and I am thinking of you. I know how stressful this is and you must be feeling confused and worried to say the least.

5

Nina,

They use the halo to calibrate the exact location of the AVM and feeders so they can target accurately. If you have an angio with out the halo, then they decide to do a radiation, then you would have to have another angio with the halo to do the targeting.

My question would be, if they do the angio, then the radiation without removing the halo in an hour or two, how sure are they of the calculations. I would want to make sure they check, double check, and recheck again to make sure they have correctly calibrated the target area. I mean, you wouldn't want them to be 3 inches off and fry your ear or something (grin).

With automation, it might be nearly automatic now. For our PBR, which was over 10 yrs ago, I think they manually figured the targeting grids, but they had a week or so between halo angio and treatment.

I was in the radiation room when they were setting Chari up. They had lasers on the machine that shined on the halo. Then they moved the patient to where the halo was lined up on the reference lines, so the halo was in synch with the machine and you couldn't move your head. I used to work around tooling jigs, and this was just a sophisticated method of that.

Hope this helps.

Ron, KS

6

Thanks, Joy. I do feel really unsettled about this. I just don’t get it. I did express concern over this today when I met with the neurosurgeon- but to be honest, I was so taken aback, I just didn’t know what to say and before I knew the appointment was over. I have an appointment tomorrow with the gamma knife surgeon so I will bring this up to him. I really want an angio before gamma. The DR today just said it wasn’t necessary and we wouldn’t be doing it. He was nice and explained the risk/benefit of surgery and gamma- said my AVM is in a great area for surgery, but he highly recommends gamma. I prefer not to have surgery- but I just don’t feel like I’m making an informed decision here. I canceled an angio back home to come to Mayo so it’s a little frustrating.

7

It does help, Ron :-) Thanks for responding. I do prefer to have gamma- I would like to avoid brain surgery. ANd yes, I want them to check, recheck, and check again before beaming me, lol.

I guess I just feel unsettled about not having the initial diagnostic angio. I see the gamma knife surgeon tomorrow so hopefully he can shed some light on this for me. This whole AVM thing is just. . . . argh!

Thanks again!
Ron, KS said:

Nina,

They use the halo to calibrate the exact location of the AVM and feeders so they can target accurately. If you have an angio with out the halo, then they decide to do a radiation, then you would have to have another angio with the halo to do the targeting.

My question would be, if they do the angio, then the radiation without removing the halo in an hour or two, how sure are they of the calculations. I would want to make sure they check, double check, and recheck again to make sure they have correctly calibrated the target area. I mean, you wouldn't want them to be 3 inches off and fry your ear or something (grin).

With automation, it might be nearly automatic now. For our PBR, which was over 10 yrs ago, I think they manually figured the targeting grids, but they had a week or so between halo angio and treatment.

I was in the radiation room when they were setting Chari up. They had lasers on the machine that shined on the halo. Then they moved the patient to where the halo was lined up on the reference lines, so the halo was in synch with the machine and you couldn't move your head. I used to work around tooling jigs, and this was just a sophisticated method of that.

Hope this helps.

Ron, KS

8

This does sound ok. The doctor you are using can look at the MRI and make a reasonable decision. Then, you checked with another doctor and he agrees. This suggests that the gamma knife can take care of the problem.

I like Ron’s idea about writing questions ahead of time. Then, if you bring it with and set it down on his desk, this will help the doctor understand your needs.

Do you know the trick about buying a car? You take someone with you who is not paying the money. This allows this person to think rational thoughts because they are not in a panic at having to pay for a car. So, it would be good to bring someone in the office with you. I was lucky to have my wife with me and she knew how to ask all the questions.

Hang tough and get the operation going. You are lucky to work with Mayo clinic. Just bring your written questions and a buddy and you will be prepared for the meeting and what follows.

9

If your AVM is on a ‘great’ spot for surgery then why do they recommend radiation? I don’t get that.
Is there any chance that any of these decisions are based on insurance? I live in Canada so I don’t fully understand the US health insurance but I don’t quite get the recommendations you are getting.
Anyway am glad you can ask more questions tomorrow. One step at a time…Don’t rush your decisions.

Al said:

This does sound ok. The doctor you are using can look at the MRI and make a reasonable decision. Then, you checked with another doctor and he agrees. This suggests that the gamma knife can take care of the problem.
I like Ron’s idea about writing questions ahead of time. Then, if you bring it with and set it down on his desk, this will help the doctor understand your needs.

Do you know the trick about buying a car? You take someone with you who is not paying the money. This allows this person to think rational thoughts because they are not in a panic at having to pay for a car. So, it would be good to bring someone in the office with you. I was lucky to have my wife with me and she knew how to ask all the questions.

Hang tough and get the operation going. You are lucky to work with Mayo clinic. Just bring your written questions and a buddy and you will be prepared for the meeting and what follows.

10

I read through all this sorta fast, so I might have missed some key points, but I had a flash in my mind.

It's like the old joke: If the only tool you have in your arsenal is a hammer, then everything looks like a NAIL.

If the treatment center you are at ONLY does gamma (no embolizations or surgery), then every fix is going to lean toward gamma.

I've always wanted my AVM treatment team to be like the OLYMPIC CHAMPION AVM TREATMENT TEAM. I want each of the key areas (Angio, MRI, Embolization, Radiation, and Surgery) to be the VERY BEST in their field that has a great working relationship with each other, then I want them to review my unique AVM situation, and provide a recommendation. Then as a group, I want them to figure out what is BEST FOR ME! Not who has an open schedule or has a boat payment due and needs the work.

I want them to communicate to me what they recommend (in words that I can understand), WHY they recommend it, and what followup treatments might include if things go well, and what followup treatments would include if their solution #1 does not work.

Each of our cases is different depending on many factors. We all talk around this, but with your course of treatment, there are pros/cons:

**Surgery to remove it once and for all--fastest to achieve AVM freedom, but maybe most risky.

**Embolizations--Generally safer than surgery, but can require multiple embos followed by radiation or surgery to remove what's left and not practical in some AVMs depending on size/location.

**Radiation--probably the safest from the point of view of deficits or collateral damage showing up at time of procedure--but slowest to achieve results, might require multiple radiations some time apart (months), and might open you to bleeding risks before it works (months/years).

There is no one-size-fits-all approach. Hope this helps.

Ron, KS

11

Hi Nina

According to the medical literature, Angiogram is the Gold Standard in diagnizing AVM.

Good Luck

Alireza

12

Hi Nina, My options were also open for surgery, ck or gk and I went with gk after 2 months of studying my angio, options etc. The only reason I can think of that your doctor is confident that the angio is not that important is maybe the MRI is very clear and the location etc is isolated in a uncomplicated area. It sounds like your doctors are very confident with what they see, which is good. However they do want an angio before making that final decision as they should just in case. I would feel more comfortable knowing the angio results and having some time to understand them before being put in a position were you and your doctors need to make a quick decision. Remember you are in control if you decide you want to stage your procedures apart more. My GK was on 9/14/10 and doing well.

13
Nina: I had a MRI, MRA, angiography and fMRI (functional MRI) done before treatment options was decided.
To determine exact size (cm3), how many feeders, type of venous drainage and location i.e how close to functional sensitive area, which are all factors necessary to know before deciding which treatment options that are possible.
My avm is very large (>6cm), with many feeders (>=four) in a very sensitive area (motor/sensory).
The reason they can not do staged gamma in my case is because of the size, location and multiple feeders (all important factors that both angiography and fMRI confirmed)
If they have suggested gamma as the best treatment option for you, that might indicate that they can read from your MRI that your avm is not in a sensitive area and not very large?
I read from your profile that your avm is in the right parietal lobe (same as mine!!)
I would strongly suggest both angiography and fMRI before deciding what to do!
If you have any questions please feel free to ask :)
Best wishes
Hanne xxx
14

Well, I saw the neurosurgeon today. . . I asked A LOT of questions and he answered them all thoroughly. He showed me my MRI/MRA and said that my AVM is mostly on the surface- some in the brain matter. He said my AVM is small and very compact. He said it is small volume AVM- 2-3cc. He said that if it bled it would not be fatal- and I would likely recover but could end up with some motor deficits. He stated that brain surgery poses about the same risk as a bleed (deficits) and also the risk of seizures. My AVM is at a ideal location for gamma and side effects would be minimal. Therefore, they recommend gamma to be the safest option. They will do an angio before gamma and we will discuss the angio before we proceed to radiation. He said that if I do have a bleed in the future, I will have a craniotomy and the gamma will make the surgery easier.

This is all at Mayo in MN. I am being seen by a team of DR's that specialize in AVM's..... really good dr's and they all agree and recommend this treatment plan. I guess I can't go wrong with the gamma and if I can't trust the opinion of DR's at Mayo, then I don't know what to do! :-)

15

My son actually went to Mayo for a second opinion. Every case is different. My son has an AVM on his left frontal lobe and it is pretty superficial. They also said he would be a candidate for gamma. My son has been having some weird neuro symptoms, problably seizures, but some think they have been acute confusional migraines. He is also very active and love sports. We got our first diagnosis from Children’s in Mpls and they recommended open brain surgery. We ended up coming back to children’s after weighing all of the options with gamma and open brain surgery. Waiting the 3 years for the results of the gamma knife and not knowing when or where he would have a nother seizure, if he’d have a bleed or if he’d be okay to play sports during the 3 year wait period was too much for us. I know how you feel. It is so hard dealing with all of the information. Don’t be afraid to ask questions and if you really want an angio first, before hand in order to have a known set plan before you go under, let it be known. It is your body and your brain and you have to advocate for your gut feelings. My son’s surgery is in two weeks. He is going to have an embolization two days before the surgery. I’ll be praying for you.

16


Ron, Where have u read that gamma radiation toughens vessel walls?! Is this documented or ur own belief? I would like to see the medical journal/article where u found this information…-GK
Ron, KS said:

Nothing you've stated flags me as being 'bad'.

It can save you one angio by doing the angio, then the gamma. If they do gamma and/or embolizations, the size of the AVM should decrease. Also with gamma, the vessel walls get tougher, reducing the chance of a bleed. If/when the AVM is smaller, surgery can remove the remainder if required.

If you haven't done so, write out all the questions you have and have your team (a nurse in their office could answer most general questions) answer them. It's not too much to ask and it IS your head they want to mess with.

Best wishes,

Ron, KS

17

Hey Greg, great question! It's not opinion, as it was explained to us by Dr Kjellberg (now deceased) at Mass General Boston about 1991. He explained AVM blood vessels related to car tires. With an AVM, some of the "plies" are missing, so the AVM vessel does not have the number of plies to contain the blood pressure, resulting in bulging vessels that can rupture (very bad) or expand causing pressure that can trigger seizures.

He was one of the pioneers in using radiation in treating AVMs (based on both what I've read and from Dr. Richard Levy at Loma Linda, who knew and worked with Dr. K. He used proton beam radiation, but I think (opinion here) the results would be similar, just the delivery methods are different.

Dr. K's studies involved lots of testing of radiation on monkey brains overseas. Like it or not, that's what he did.

His explanation said that radiation both shrinks the vessel size and toughens the walls. The Shrinkage could be seen on scans, but I think (opinion) that the only way you could tell if the walls were tougher would be to dissect them before and after radiation, so it would seem harder to prove.

I went to google and found a lot of info talking about toughening--most of it was discussions related to HERE, so I don't consider that valid. I did try to google through some of the medical journals, but quickly realized the same frustration I experienced years ago when we were searching for a treatment for Chari's AVM. It's all medical gobbledegook and I'm not sure what I am reading.

I did find one medical study (lost the link, sorry) that mentioned that radiation "narrowed" the affected walls, but it did not say "toughen".

If any of you are in the search now and have found words to prove or disprove what I said, pls post it. I certainly don't want to disspell bad info.

Thanks for calling me on it Gregg--it makes us all better when we get good data out there.

Ron, KS

Greg K said:

Ron, Where have u read that gamma radiation toughens vessel walls?! Is this documented or ur own belief? I would like to see the medical journal/article where u found this information.....
18

Hey Ron, Thanks for the informative response! I understand Dr. K’s analogy of the tire plies to formation of an anuerysm and potential rupture. Another question that I had regarding gradual ‘shrinkage’ of vessels over the latent period following radiation is…Wouldn’t shrinking vessels inside the avm increase the pressure running through it?! Hence, increased risks of hemorrhage? I was also told by the stereotactic neuro at UTSW that there was no increased risk of bleed, but was given no explanation as to how, or why? I guess the question is…Are there cases where survivors here have suffered a bleed following Gamma/Cyber, PBR, etc.? The “toughening” point, I think, would be counterintuitive to the end goal of obliteration?(my opinion). However, my opinion/concern regarding radiation is less about the 2-3 yr waiting period, and more about the effects of radiation on surrounding ‘good’ brain. Thanks again for ur response, Ron, hope ur family is good during this holiday season! -GK

Ron, KS said:

Hey Greg, great question! It's not opinion, as it was explained to us by Dr Kjellberg (now deceased) at Mass General Boston about 1991. He explained AVM blood vessels related to car tires. With an AVM, some of the "plies" are missing, so the AVM vessel does not have the number of plies to contain the blood pressure, resulting in bulging vessels that can rupture (very bad) or expand causing pressure that can trigger seizures.

He was one of the pioneers in using radiation in treating AVMs (based on both what I've read and from Dr. Richard Levy at Loma Linda, who knew and worked with Dr. K. He used proton beam radiation, but I think (opinion here) the results would be similar, just the delivery methods are different.

Dr. K's studies involved lots of testing of radiation on monkey brains overseas. Like it or not, that's what he did.

His explanation said that radiation both shrinks the vessel size and toughens the walls. The Shrinkage could be seen on scans, but I think (opinion) that the only way you could tell if the walls were tougher would be to dissect them before and after radiation, so it would seem harder to prove.

I went to google and found a lot of info talking about toughening--most of it was discussions related to HERE, so I don't consider that valid. I did try to google through some of the medical journals, but quickly realized the same frustration I experienced years ago when we were searching for a treatment for Chari's AVM. It's all medical gobbledegook and I'm not sure what I am reading.

I did find one medical study (lost the link, sorry) that mentioned that radiation "narrowed" the affected walls, but it did not say "toughen".

If any of you are in the search now and have found words to prove or disprove what I said, pls post it. I certainly don't want to disspell bad info.

Thanks for calling me on it Gregg--it makes us all better when we get good data out there.

Ron, KS

Greg K said:

Ron, Where have u read that gamma radiation toughens vessel walls?! Is this documented or ur own belief? I would like to see the medical journal/article where u found this information.....
19

Hello every one. Happy new year..

Per the concern RSS makes vessels stronger or weaker..

Just wanted to add to what the docs told me just before signing my consent for GK. I know they MUST tell you all possibilities by their policies and maybe medical law including but not limited to a bleed, tumors, death blar blar blar. However when they said it could cause a bleed, I questioned them "hang on a sec, this can cause a bleed?" He said there has been talk about it as a concern but no clinical evidence has proven that radiation was the cause of any bleed post RSS. When I was considering CK that doc in her opinion believed RSS made the vessels stronger as they scar. I'm on the fence with this question but leaning towards it makes no difference.

20

When I had my appointment with DR. Pollock, the neurosurgeon for GK, I asked him if the gamma thickened the vessel walls- and he said yes. . .

I really appreciate all the feedback and conversation on this :-)
Brett D said:

Hello every one. Happy new year..

Per the concern RSS makes vessels stronger or weaker..

Just wanted to add to what the docs told me just before signing my consent for GK. I know they MUST tell you all possibilities by their policies and maybe medical law including but not limited to a bleed, tumors, death blar blar blar. However when they said it could cause a bleed, I questioned them "hang on a sec, this can cause a bleed?" He said there has been talk about it as a concern but no clinical evidence has proven that radiation was the cause of any bleed post RSS. When I was considering CK that doc in her opinion believed RSS made the vessels stronger as they scar. I'm on the fence with this question but leaning towards it makes no difference.