AVM of right temporal lobe. Looking for right treatment

Hi to everyone in the Group. I was diagnosed last month with an AVM of the right temporal lobe after clinical and imaging evaluation for a persistent chronic unprovoked pain of the right eye. Apart from this syptom and tinnitus, I am in a very good clinical condition and active. I am 47 yrs old. My AVM is 1,5 cm. I am currently evaluating treatment options. I have some divergent views to date as to the best option. There are two camps:a) embolization plus surgery for more immediate results b) radioctatic surgery with Cyberknife or Gamma knife. The latter camp suggests that as the AVM is a small one, on the surface on the brain, with no important symptoms to date, I should go for a less invasive method. Any views regarding the decision making criteria are mostly welcomed. Also I would welcome any views regarding the pros and cons of Cyberknife vs Gamma Knife. The former seems more easy to perform, however I am not sure about impact and symptoms. Best Regards

Hi and welcome to the group. My AVM is in the left temporal and was discovered as a result of a beed. I won’t get in to the details but i was left with two options, craniotomy and gamma knife. Mine is on the inside if the lobe, which meant surgery required the surgeon to “mash through” a fair bit of brain…I actually loved my doc, he pulled no punches which I appreciated! Given the fact the bleed had stopped, the risk associated to the craniotomy the recommendation was gamma knife. The thought was the least risk of significant side effects. The time is the risk, ad the chance of another bleed. I’m now 17 months post treatment and while not clear am edging closer to being AVM free. So a long way, mine was based on risk and the recommendation of a surgeon I trusted. Again, welcome! You will hopefully get a variety of opinions to help you in your decision making process. Take Care, John.

i have avm on right temporal lobe 2.5cm and my dr told me samething that i can choice gamma knife or craniotomy but after 6 month of diagnosis i decided to go for craniotomy and my surgery is schdule on april 24

John thanks a lot for the background and the welcome. Much appreciated. The risk assessment in your case was more straightforward as I understand given higher complexity of a surgery operation. In my case I am told that the surgery is less risky as the AVM is small and superficial. Still the question is whether such an method is the right one compared to less interventional ones. I also noted that you have been advised to do Gamma knife which is the standard as I understand from the stories of various forum members. Have you considered Cyber Knife or it was not an option at all? Thanks

1 Like

Thanks a lot for the feedback. I wish you all the best in your surgery! Regards. Lazaros

Does this help?

1 Like

Cyber knife wasn’t available in my home province and I was satisfied with the process ending in gamma, particularly the medical folks I was dealing with. Has the AVM been on the other side of the lobe, ie/ on the outside side, it would have been a craniotomy, hands down for me had the risk been similar. John.

Hiya, i also had a AVM in my right temporal lobe. I had four embolizations and a craniotomy. That was my plan going in, and I walked out good as new about 4 months after first symptom. I chose surgery because it was faster and recommended by the doctor. I have a friend doing gamma knife, and she needs to go back every 3 months for what seems like years. I was more into just getting it over with. Hope this helps

  • Chad
1 Like

Thanks Chad. Glad you are in good shape. Embolizations were done with a view to reduce risk of surgery? What was your AVM’s grade in the relevant scale if I am allowed? L

Hi Lazaros, I can’t remember the grade. This was back in 2005. I can remember thinking “that sucks” when learning of the grade. I think it was a 4 of 5. Is the size rated 1-5?

Anyway, yes the embolizations were to “starve the beast.” The goal was to shrink the AVM by cutting off some blood flow, then remove surgically. The initial plan was to do 3 then surgery. We called an audible and did a 4th, which was basically ineffective, then a crainotomy. It all worked out fine save 1 big scar. Now that I’m totally bald, the scar is a shitty dinner conversation or parlor trick. But, I roll with it. Hope this helps
-Chad

1 Like

Don’t know the grade as it was 1979 and they didn’t tell you things like that but I went for cyber knife on my R temp lobe 20 years later. Had it done twice. Problems are memory and temp lobe epilepsy but I had that after the bleed anyway. AVM gone now though. Still taking meds. I’m coming up to my 40th year since my bleed next year.

1 Like

Hi Laz,
My AVM was also on the surface of the brain, though left frontal lobe. It was found after an initial bleed, which affected my speech. I was released from the hospital after 4 days, told that it was highly unlikely to have another bleed, then met with the surgeon a couple of days later. But before that meeting, I accessed my options on the internet, and had chosen surgery. Met with the surgeon, he agreed with my reasoning (that I planned to live another 40 years, and did not want to live with the uncertainty of embolization or radiation with its 3-year wait, so I wanted surgery asap.) Then, the next day, I had another bleed, with further deficits.
Anyway, they did the craniotomy as soon as they could, and I survived. That was almost two years ago.
The reason I chose surgery was that they listed the likelihood of another bleed at 2-3 up to 6 % per year. And the AVM was 1.5 - 2 cm, sitting right on the surface, with one lobe penetrating into the brain about 1.5 cm. Even though I was 59 at the time, I also had two sons in elementary school, and I want to see them reach adulthood. (though now I have two teenage boys who know everything…:rofl:)
Anyway, am glad I went with the surgery, and the fact that it was sitting on the surface meant that it would be the easiest it could be to have surgical intervention.
Still have deficits, but am here to have them.
Good luck in your choice.

Hi

Good to hear positive outcomes. Thanks a lot. The base case I get from doctors I met somfar is surgery given my AVM is operable. It’s just that I never had surgery of any kind in my life and it’s harder, given no deficits or major syptoms, to take the decision. Also I had one doctor (not a neurosurgeon) suggesting stereotactic radiation as the best option which made me skeptical. I go on with my analysis and hopefully things will be clearer down the road.

Best

L

Hi Lazaros,

Like you I had my AVM in the same location and 1 month after being told I then suffered a bleed. I was given options at first prior to the bleed but was then told surgey was the best option as it was easy to get to and confident for full removal… I guess at the end of the day you need to make that decision with your family and what you think the best option is with your medical experts… I can say that my surgery was successful and i dont regret anything… God bless!

Hi Andrian

Very true. Out of curiosity, prior to this bleed did you have any symptom? Had you also found the AVM coincidentally?

Best Laz

I am a current 50 year Survivor of my AVM and it is back again. I just had my angiogram on Thursday and my treatment options were surgical resection which he said was very dangerous at this point, imbolization, the gamma radiation or Nothing at All. He did say that the gamma may take up to 3 years to work so I am choosing the imbolization. Mine is in my face so that may make a difference. The possibility of my skin dying frightened me with gamma. Best wishes.