Unruptured Grade V AVM - Treatment Fears

[BrendanLeftFrontal]

Hi all. Thanks so much for welcoming me here.

Late last year, I was diagnosed with a Grade V left frontal lobe AVM after experiencing what they later determined was a minor seizure. They also discovered an unrelated saccular aneurysm on my right internal carotid. I’m 46, father to a young daughter, and have never had any other health issues.

It’s all been a lot to process. I have a local neurosurgeon who has experience with AVMs, but I felt he was rushing me into things and, after a bad experience with the hospital he referred me to for my angiogram, which I ended up cancelling, I decided to put the brakes on and take some time to research and seek other opinions. I’ve since gotten a second opinion from the Barrow Institute and have a telemedicine appointment scheduled with GNI.

I feel like my current neurosurgeon glanced over a lot of important information that my own research brought up. He didn’t even grade the AVM or really communicate how severe it is, nor did he explain the severity of the risks involved with treatment. The AVM is inoperable, so SRS is the only option I’ve been given, but because of the location, I’m very concerned about having that much radiation going through brain tissue. I’m starting to feel like the risk of deficits isn’t worth the 65-70% chance of successful obliteration.

I’d be grateful for any input any of you might have.

[dageris]

@BrendanLeftFrontal . My son 23 just got his gamma knife done on the 19th of March . He also got Embolization on January 16th. It’s too important that you get the courage to protect yourself from a bleed or massive seizure or hemorrhage from aneurysm. I’m not a doctor but I’ve read way to many unpredictable bad things due to what I just mentioned for you not to do what the experts are guiding you to do. It could save your life. Have courage. The radiation it emits (Gamma Knife) doesn’t hurt surrounding brain tissue. Now some people do have headaches or necrosis but it’s rare to have a bad reaction. Prayers for you !

[JD12]

Welcome! Its always a bittersweet to welcome people, great you’re here with us, too bad you have a reason to find us! I was 48 when my AVM ruptured, I had no indication or symptoms prior to this. It was a Grade II on the inner side of the left temporal. After several days in the hospital and a fairly long recovery at home I started the “what now” journey. I had 2 CTs, an MRI and 2 angios. I was fortunate to have a couple options in respect to treatment. Craniotomy, however the location presented several challenges to access and would certainly have left me with some deficits, particularly vision. My second option presented less risk, but also presented some lag time, that being gamma knife. The decision was easy for me based on the conversation with the neurosurgeon. He answered my question, “If it was you, what would you do?” He replied gamma knife.

The decision was gamma knife, but if further bleed in the lag time it would be removed. I did not wish to have a second bleed. I had GK in November 2016, and declared obliterated in February 2019.

I have no side effects of gamma knife, but a couple although now very minor from the bleed. Most wouldn’t notice, memory is not 100% and a wee bit of aphasia, particularly when tired. I was completely comfortable and confident in my care team, and that made all the difference in my decision. I look now and say it was the right one for me but didn’t know this for a couple years!

Do your research, you have a second opinion and Barrow is as well respected as any, many people here have been there. When decision time you will probably not know if it is right or not until some time down the road, I tell people to be at peace with the decision. There are no absolutes in any of this and it is a balancing of pros, cons and risk. If mine was discovered incidentally, I have no idea what I may have done, so I can only pass along my situation and what options and thought I had. Take Care, John

[JFrancisco]

Hello @BrendanLeftFrontal

I am sorry you are going through this like many of us, you certainly came to the right place for information.

I am 46, father of two beautiful daughters. My AVM journey was 2 years ago, we caught it incidentally in an MRI. The size and location permitted craniotomy, which was a tough decision. Everything went well, although recovery was really hard 5-6 months of therapy.

I would say that research is good, if it comes out of great places. Barrow, Mayo, Cleveland Clinic (my case), Stanford and others alike have a lot of experience. I would recommend you look into these places and their specialists. And when you have information from a trusted and vetted neurosurgeon, decide on a treatment.

You are young, with the right treatment you will certainly meet your grandchildren……

Best

Francisco

[Michael_P]

I too had an inoperable AVM (near my brain stem and cerebellum) with two flow related aneurysms. The AVM was said to be pressing on my 5th cranial nerve causing electrical shocks to go down the nerve behind my right eye. This was discovered through an MRI done for these shocks. Be mindful of who is deemed an expert as I’m surprised how much physicians do not know. I’d get 3-4 opinions (I think you’re on the right path going to Borrow).

When mine was discovered I was working at Cleveland Clinic Abu Dhabi. I met with the Chief of the Neurological Institute, an interventional radiologist. They are so specialized that they can really only speak to your issue from their specialty. The UAE did not have a gamma knife so I was referred to Cleveland Clinic for the procedure. I had MRIs annually and after 3 years it was 9X% obliterated. The nureo surgen who was looking at my images said that if he did not know I had an AVM he could not have found it, but having a side by side, said there was just 3% to 5% remaining after 3 years. I was told on the front end it may take four years. I year 5 I did have one more gamma knife procure at Intermountain Health Care in Salt Lake City. That was 1.5 years ago so maybe next year I’ll have a follow up MRI.

I had 14 grays of radiation on the first procedure. They said there are 201 gamma rays from cobalt and the only radiation is where they all focus, which is inner vessel wall. They said there’s no negative impact on the path, only the focal point. My aneurysms have resolved themselves, now that I don’t have an artery draining through a vein without going through a capillary bed which otherwise reduces the pressure that a draining vein is not designed to handle.

I would recommend gamma knife if it’s inoperable anyway.

[Adrian1]

Welcome to the family & sorry to hear about your diagnosis… I definitely agree with getting second opinions, especially when you don’t feel comfortable… you need to do what makes you feel comfortable in these cases cause ultimately it is your life at the end of the day!

Please keep us posted on your journey… God bless!

[Kevphilosophy]

Hi Brendan,
First, as others have said, I am sorry for your diagnosis.
I can say, I had a slightly similar experience as you did when it was first discovered. I was in the neuroICU, and the vascular surgeon came in after an angio and informed me of my avm. He gave me a minimal explanation for it (that its a bundle of weak vessels), and said I had three options to pick from; cranio, embo, GK. He didn’t tell me any risks of GK besides that I could bleed again in the time. He told me they’d be ready to do the GK in two weeks. At the moment, I was calmed, but after doing some research on the internet, I realized there was so much more than what that surgeon said. I decided I wanted to return home to be with my mother so I could have help and for emotional recovery. At the UM, they gave me a much better explanation and my neurosurgeon explained a lot more about GK and the risks (they don’t even know why the other surgeon mentioned cranio and embo with me, they are not at all on the table for me). So happy I did not have the original doctor treat me.

Alright, now to move on to what I can say (and I will say it as objectively as I can without personal experience); it is difficult to give advice specifically from experience. Every person is different from the other. Currently, it is difficult to say whether it is better to leave an unruptured avm untreated or to treat it. This was done under studies, but was met with accusations of poor experimentation and research methods (you can find more of this in our group here). There is, however, to point that the larger avms are less likely to rupture. This is not a guarantee of course. I have a larger one and well… On the alternative, the goal would be to cure yourself of a concern of a rupture, an event that could go any way. However, as noted, the likelihood of rupture if unruptured is also quite low. Further, you should not be too concern about the radiation passing through tissue. While daunting in thought, the only location where the radiation can be effective is where each beam intersects. This is an extremely small and precise location. On the other side of concerns regarding GK, there is nothing wrong with being concerned of RIC. It was a massive concern when I was doing my research and discussing with my doctors. It must be noted that a lot of research on RN regarding avm treatment is sparse at best. Most research regarding it will involve other conditions. At about a year and a half, I started experiencing RICs when I had my first ever large seizure which resulted in a noticeable edema being present (I have theories as to why this occurs for us, but I will not state them because I’m just a philosopher, not a doctor or a biomedical researcher). I began a regimen of steroids. It was hard, there will be no lie about this, but, it was what I needed. I have my headaches, I have less energy, and I can’t really play football anymore. Certainly moments of bummers, but, I have a significant trade off; living. Some other things are missing from life, I have had a couple of seizures in the recovery, which means I cannot drive as well right now, I also travel quite a bit less. However, I do not suggest the loss of certain comforts being the reason you do not pursue a treatment. Maybe it becomes a little more difficult to drive your daughter to certain places if you are in a position you cannot drive (not a guarantee you will be for the record). However, there are many ways to work through life to accept this and work around it. You don’t become boxing champion without taking a few punches, ya know?
The best advice then, is to bring these up with the doctors you meet, and try to find doctors that have significant experience in treating avms (Barrow is a good location to seek advice and help). Keep doing your research, keep asking questions. However, keep in mind to always make rational judgements. It is a terrifying experience and having the weight of decisions we must make in our position is occasionally far too overwhelming for us. In my research, I often would experience an anxiety attack and would have to be constantly calmed by my mother. In reality, I got so absorbed into the research, my mom suggested I stop because it started to seem as though I read everything that could be read.
At this point, I am rambling and my response is getting too long. Do your research, go over it with a doctor with a good background in our disorder, and on top of that, remain calm and keep your blood cool. The doctors (the good ones anyways) are genuinely working in your best interest.
Best regards,
Kev