Wondering anyone out there with approx 4.5 * 3.5 cm brain AVM on left perital lobe and the treatment options

Hi All,

I have my fist neurosurgeon appt next tuesday and I’m extremely nervous, getting emotional and all sorts of things are coming into my mind…my AVM is in left perital lobe and about 4.3*3.5 cm in size, I’m wondering if anyone is out there with simliar location or size and the treatment options they would have been advised by their consultants…I dont know if the size or location is considered to be in tricky zone for treatments hence looking for someone who has been through this and can share their experience.

I can’t comment on the location, but my husband’s was 4 x 6 and treated successfully with 2 embolizations.

If you search this site, you can find lists of first-appointment questions people have made. I think it’s a good idea to have your questions ready and written down beforehand, so you can get as much information as possible. Bring a notebook, and try to have someone with you to help you remember everything that’s said.

One thing that’s definitely worth asking about is your surgeon’s experience with AVMs. How many has s/he treated this year, has s/he worked in this lobe before, does s/he (or colleagues in the department) have experience with all of the major AVM treatments (in addition to surgery, there are different ways to do embolizations and different ways to do radiation, and maybe other types of treatment). Each case is unique, so you want to be sure you’re putting yourself in the hands of the person with a reasonable amount of AVM experience and knowledge of all the treatment options there might be.

Good luck at your appointment!

Hey KY, Ive just had my first appointment for consultation at Glasgow southern General. This is when they will explain everything to you as far as; if your avm can be treated or not! Take it one step at a time would be my advice!. the next step for me is to have an angiogram done to determine which treatment will be given. As JH has commented, write down any questions you may want to ask. I took my partner with me who recorded the conversation on his phone. without the neurologist knowing of course! lol but this helped me as i couldnt take in all the info! Remember one step at a time!! Try not too worry too much. I know this sounds silly but believe me… It does get easier to deal with. I also done lots of homework before my appointment so i had a better idea of the medical names being used! I send positive thoughts and best wishes your way!! Take care for now!! xxx

I did a search on here for you…
http://www.avmsurvivors.org/main/search/search?q=Left+parital+lobe

i have a similar left side AVM (3 of the buggers!) and surgery on the second. The only option for me was GKR, as the AVM was just too large and all over the place. But thx too 2 dose sof GKR over 7 years period, ive now has 90% of it removed.

Thanks everyone.

I had my first appointment today with neurosurgeon, it went really well. Most importantly he seems to be very nice person and assured me that he will give high priority to this case and book me in for angio soon. He had to discuss my case with the team of experts and they have to review it jointly to figure out next steps. Most probably it’ll be a couple of embolisations followed by GK. He said its too deep to take it out surgically…The fact that I’m not having a lot of bad sysmptoms at the moment, they have to do cost/benefit analysis before they offer any teeatment as I have quite a normal life right now. He was quite conscious about this aspect. But overall I felt really confident meeting him and a lot more positive than I was in past few weeks.

Thank you all so much for your continued support. Your tips helped a lot, I prepared a set of questions but I remembered all of them on to of my head that I didnt have to refer to that list :slight_smile:

It’s great news that it’s treatable! I’m glad your appointment went well.

Thansk JH, well thats what I’m hoping, My huband asked him very specifically that is there a possibilty that it can’t be treated for that he said it doens’t look like that looking at images of MRI but of course we need to look at angio first to comment any further.

I was just diagnosed in April with a 6 cm AVM in my right parietal lobe. My surgeon thought it would be too risky to operate on at this time, so his original plan was to do 3 gamma knife treatments, then surgery.

I had a gamma knife treatment in early June, and he now thinks that with another gamma knife in December, we should be done with treatment–no 3rd treatment or surgery for the AVM!

However, I did have an aneurysm that was likely caused by the AVM that he found very worrisome, and I had a craniotomy 4 weeks ago to have it clipped. While they had my head open, they found a second aneurysm that had been “hiding” in the various scans. It was close to rupturing, and they fixed it, too.

I am a teacher, and on summer break from school, so this has been good timing. I am mostly back to “normal”, but I still tire more easily. I am getting stronger day by day. We officially report back to our schools on August 15, but I’will most likely go in this week & start getting my classroom together.

hello A collins. I must admit im suprised they have dosed u twice GKR in such a shiort burst - u wont get any real result until 2 to 3 years later on.



A Collins said:
I was just diagnosed in April with a 6 cm AVM in my right parietal lobe. My surgeon thought it would be too risky to operate on at this time, so his original plan was to do 3 gamma knife treatments, then surgery.

I had a gamma knife treatment in early June, and he now thinks that with another gamma knife in December, we should be done with treatment--no 3rd treatment or surgery for the AVM!

However, I did have an aneurysm that was likely caused by the AVM that he found very worrisome, and I had a craniotomy 4 weeks ago to have it clipped. While they had my head open, they found a second aneurysm that had been "hiding" in the various scans. It was close to rupturing, and they fixed it, too.

I am a teacher, and on summer break from school, so this has been good timing. I am mostly back to "normal", but I still tire more easily. I am getting stronger day by day. We officially report back to our schools on August 15, but I'will most likely go in this week & start getting my classroom together.

That’s great A Collins that you will be sorted out so quickly. I can’t believe that you can get rid of it so soon. Wish you good luck and hope you get some energy back before the new school session.

My AVM was in the left parietal lobe. Because of the size dr’s couldn’t do radiation so they had to remove it. Because of the location I couldn’t remove my right arm and my speech was very slurred but the speech came back after the brain swelling went down. The right arm I had to work with. After a few months I was back to normal. That was 14 years ago. 18 mos ago I started having neurologicaL problems because of the scar tissue that has developed.

sorry mine was front right and size of tennis ball. i wish you all the best tho and good luck

Very glad your appointment went well and that your neurologist was kind and reassuring! Best wishes for your treatment, and keep us updated!

It sounds like you’re in the UK - is that right? I am too, and I’ve got my first appointment with a neurologist next month. It’s always good to hear about other people’s experiences with the NHS!

@ Richard Denning…I was really pleased to read that after 2 doses of GK you have had 90% removed. Can I ask you a question? My specialist said that if some of mine is left over after 2 years that I will be at as much risk as I am now of another bleed. Were you aware of this? What did your specialist say when he told you were 90% clear? Thanks

I’m in Dublin, I was very lucky to get an appointment with neurologist in 1.5 week after my MRI results but I went pvt. I believe that i got an appointment aganist a cancellation otherwise the waiting here is pretty long as well.

Good luck with your appt next month and keep us updated.

My son’s AVM was in his left temporal lobe but was large-3.5x4.4.(I don’t know how that compares to where yours is) His Dr’s approach was to gradually reduce the size of the AVM via multiple embolizations…wait 5-6 weeks btwn each embolization in order to give the brain a chance to deal with the changed blood flow and recuperate…and then craniotomy when AVM was reduced by 95%. He planned 3 to 4 embolizations as he wanted to shut down the AVM slowly to reduce complications. My son (21)had 2 embolizations and then a craniotomy (the AVM had a mind of its own and was reduced quicker).I whole heartedly agree with JH in that it is extremely important to find out how much experience your Dr has with AVM’s as they will all say they are “qualified”. My son’s initial dr at a different hospital where he was first transported to told me he was "highly qualified"to perform the operation…when I kept asking how many AVM’s he’s treated he again said he could “handle this type of surgery and has experience with it”… I kept asking(being a former nurse)how many he had done and he finally admitted that while he is perfectly "capable’ there are other surgeons near big cities that probably might have more experience with AVM. He did seem a little insulted at my questioning-but I really didnt care.I felt I had to give my son the best chance as he only has one shot to get it right. So, ask questions…don’t be intimidated…(and by the way, the Dr at the first hospital had a different plan-shut down AVM in one embolization and remove it 2 days later…glad I asked questions) the best of luck to you.

Hi Yvonne, i must admit that doesnt make any sense to me at all. an AVM is what it is - bleeds that have cut across viens. Without any trament, u have a much higher risk of another bleed, simply because theres a lot more blood around certain areasa. Of course if u remove 100% of AVM - theres always a chanc eof a bleed of a stroke, but of course the percentage is much lower.

Now that i have 90% removed, the risk is a lot lower. Its just common sense thats to be true. Yes, there is still a higher risk of a bleed because i havent had the entire lot removed - buy now that 90% of the bleed has simply been removed, the risk is a lot lower.

Do u think that the 2 doses was just a waist of time? Of course not. I would say your specilist simply wants to make u feel rather bad!

my specilist (the top neuro in southampton) has told me that by removing 90% has given me a greater chance of success without any more bleed. I bekieve him, for sure! Saved my life before…i would say et a second opinion.