New member introduction - Ryan

exactly, it’s kind of just a waiting game at this point. with all the craziness going on in the world right now its been stressful but i’ve been doing my best to stay relaxed and enjoy the blessings i do have.

The waiting is one of the worst bits, I think. Though craniotomy would be my worst thing – I didn’t have a craniotomy.

I do think the size of your AVM will be a factor in whether the doc says that gamma knife is the right choice for you, though the location of it and any possible collateral damage from either surgery or gamma is also a factor.

Ask the doc about why he is making his/her recommendation to do gamma, especially if he/she is fixated on it. There are three main modes of treatment – surgery “craniotomy”, radiotherapy, e.g. “gamma knife” (there are other methods too) and glueing up the sob “embolisation”. Sometimes a combination of treatments is right. Sometimes doctors recommend the mode that they are familiar with, rather than what is best for you, so I think it is good to understand why the doc is choosing a course for you. It’s it because it is best or is it because you’ll be paying them rather than someone else to do the work?

Good luck! I think you said you’re up tomorrow?

Best wishes,

Richard

very well said Richard. I’ve considered that. after my consultation tomorrow, which is in spokane. I’m planning on talking to my neuro surgeon here in my home town montana and see what they recommend as well. i’ve already met my deductible this year so i figure a second opinion cant hurt. appreciate your comment!

You can also get remote second opinions from places like Barrow Neurological Institute or Johns Hopkins for about $200 if you get to needing a casting vote!

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ill definitely consider that option!

Have a good day tomorrow.

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glad everything went well for you. total obliteration is the best news you can get! congrats!!! thanks John

yea with mine being deep down by the thalamus gland, everything else was more risky then gamma. as small as mine was i only had one stage of gamma.

so how did your appointment go. ill be nosey and ask

not the best. basically because of the size of my avm 4cm and the location my temporal lobe, surgery risks outweigh the possible benefits. It was basically told to me that if i have the surgery they would have to wake me up in the middle of it and talk to me to figure out where my speech lays in my brain. gamma ray is out of the question because of the location. and craniatomy would be a 50/50 chance on me waking up extremely disabled. I’m gonna get some more opinions. but for now i’m thinking about living with this. and praying for the best that it never bursts. it’s a tough decision

It’s a sensible thing not to choose treatment if it is more dangerous to do. It’s a really difficult answer but it’s honest and you’re not alone.

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the most reassuring thing i was told at my appointment is that the neurosurgeon sees alot of patients that are 80+ years old that are now just realizing they have an avm and have lived their whole lives with it without complications. I’m taking that for what it is. but it does give me some hope. I was just hoping for more of a solution, but in my opinion, a life without being able to speak or understand others wouldn’t be much of a life at all.

It’s a good thing to get a further opinion but it is likely you’ll get a similar reply.

The other thing I think of is that we live at the best time ever to have these things dealt with. I’m convinced that my grandfather had an AVM or something similar but he lived in the early 20th century and nobody had the means to even look at what was behind his nosebleeds and migraines, never mind do anything about them. You’re quite young, so it’s possible that new treatments or better accuracy of treatments could be achieved in the next 20 years or 30 years, same as they have changed since some of the older folk here had their treatment.

There are several other friends you have here who are also having to just cope with it, so you’re definitely not alone. Plus, there are some questions about how efficacious having treatment actually is. It’s not perfectly clear that having surgery or embolisation or gamma clearly improves outcomes. Doctors strongly believe in the treatments but there is no nice, clear independent evidence, I think.

So, be positive. All of life’s other challenges are still there. That you know about one of them could be a good thing.

Sending you my very best wishes,

Richard

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thank you Richard that was very well said!

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yea thats not the best news, id find the closest major city to you and drive there. im lucky atlanta is omly about 2 hours from me. but with major stuff like the brain id go as far as i needed to.

when mine popped my neurosergeon said its like a 4% chance it will pop but the chances go up slightly every year because your veins gets weaker as you get older.

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Hi Ryan, Welcome.

I know it’s not a club you’d pick out for yourself, however the folks here are all awesome.
You mentioned your age in your post. It made me remember something I was told about AVM’s way back when I was finally diagnosed. The doc’s said that the medical literature showed at that time, that most AVM’s present in the adolescent early years. I don’t remember the exact age range but the impression I had was before the mid-20’s. Which was true in my case. My bleeds started at the age of 19. But wasn’t diagnosed for 3 more years until 1989, pre-internet days. In 1993 I was an early adopter of the internet. Back then there weren’t many AVMer’s. Unfortunately it seems our ranks have been increasing over the years. So maybe the docs have more of those numbers to look at and compile. Might be a question to ask of your doc’s if you haven’t already.

So, I was wondering if folks here would be willing to share some info, gather an informal poll that we could share with our doctors - such as:

Location of AVM:
M/F:
Did your AVM bleed?
If so, at what age?
How many times has it bled?
Has it been removed?
By what modality?
If it did not bleed, how/what/why was it found?
Lasting side effects, if any, after treatment?
Lasting side effects, if any, after no treatment?

Keep your chin up Ryan, as you’ve already indicated, by being grateful for the blessing you do have.

God bless.
Kim

Kim, Ryan,

We already have a bit of a poll of “where is your AVM?” and I did a bit of a word cloud summary of it.

I’ll have a look to see if there were other questions asked me the “AVM Guide”…

Richard

Richard,
Wow wee, that is way beyond anything my old school ways could have accomplished. Very cool. Thank you.

edited to add: I was most interested in age of first bleed, if any, then presentation.

I’ve heard of these things, so I found a web site that does the data crunching!

I’ve found the various questions for the “AVM Guide” and moved them to the AVM 101 category, into a sub-category called AVM Guide

Have a bit of a look in there. I think question 4 might cover most of it, but if you think we need a Question #7, you could start a Question #7.

I hope this is helpful.

I’ll ask where the output ever went! It was before I joined…

Hi DickD, Thanks for the info. I had no idea all this was already out here. My bad. Thank you.

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