Be careful of calling an AVM a ticking time bomb to someone who has no choice but to live with it

General
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Three months ago I went to Google and searched AVM for the first time. Next I typed in AVM Forum and this site popped up. Since then I have spent most of my time on this site and researching doctors and hospitals you have talked about in your posts.
O think you will find the difference in opinions of doctors interesting:

Dr. Frank Hellinger, Orlando did an angiogram he said the avm would require from 5 to 10 embolizations and then surgery would follow, done by another neurosurgeon in the same group. He went on to say it was too large for radio surgery.

When we spoke with the surgeon in the above mentioned group, he we asked him how many avm surgeries he had done. His answer, "A fair number". He was comfortable to do the surgery.

A second opinion was given at Shands Medical Center, Gainsville,Fl.
Dr. Brian Hoh said he could do the surgery but wanted us to talk with the radio surgeon first, to see if he could do gamma knife.

The radiosurgeon, Dr. Friedman said the avm was within range to do radio surgery.He was comfortable to do the gamma.

A last minute opportunity came available to go to Johns Hopkins for an opinion.
Dr. Alexander Coon, of J.H. discouraged treatment due to the location of the avm.It is in or near the motor strip.

Same angiogram was then sent to two of the top surgeons in the United States for review.
Dr. Duke Sampson said he did not recommend surgery and that there was a high chance it would cause permanent disability to do so.
Dr. Robert Spetzler said he did not recommend surgery and that there was a high chance of permanent disability to do so.

THE BEST DOCTORS DID NOT WANT TO DO SURGERY. THOSE LESS EXPERIENCED WERE READY TO GET OUT THERI KNIVES.

At this time my loved one is listening to the advice of those who are highly experienced in doing avm surgeries. He is not having surgery. For him, and people like him, I wish everyone would stop calling an avm a TICKING TIME BOMB. In my opinion inexperienced avm surgeons who want to take a jab at an avm located in a eloquent area of the brain are more dangerous than an avm, itself.

Thanks so much for each one of you who wrote of your ecperiences, in particular the ones who specified exact location of their avm and names of doctors and hospitals. One of the top doctors I spoke with told me there are about ten hospitals in America who have a team of surgeons, neurologists, etc. who work together to successfully treat arms. In this case, I trust the doctors who say they can not do it, more than I trust the doctors who say they can do it.

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Your points are well taken, lea, and I think you and your loved one are very wise. A lot of members here have heard the "ticking time bomb" line and object to it; others will use the term themselves, but often ironically.

When it comes right down to it, we are mortal and all going to go sometime; in a sense, we are all "ticking time bombs." If Spetzler and Sampson say not to meddle with the avm, I too would listen to them, unless medical technology evolves significantly and new treatments or a cure emerge.

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I think that your decision is a wise one. You were very smart to get several opinions before rushing in to surgery!

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Hi Lea!

I am so very happy that you spoke with two fantastic doctors and that they gave you the same opinion.

I also totally agree about the ticking time bomb thing. I have taken a year myself after diagnosis to let it marinade and decide what to do. I am ok not treating and don’t like that people (including my amazing but super worried mom) are calling it a ticking time bomb. Her biggest concern is that something may or may not happen to me and the way I look at it is that I could step outside tomorrow and get hit by a car. Thus I can’t live my life in fear of my AVM nor do I want to change my life and cause possible disabilities by having it treated.

You and your son made the right decision in talking with those two amazing doctors :slight_smile:

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Great post Lea. Thank you for posting the different responses from various doctors. As patients, we need to keep probing, asking all the possible questions we can think of, referrals, speak to other patients if possible about that doctor, and combine that with what our "gut is telling us." I wish there were more doctors out there who would actually be honest about their ability to tackle certain AVMs too. The AVM world would be a better place.

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I myself, don't have a problem with it being referred to as a "ticking time bomb". It doesn't bother me in the least. Many bombs are nothing more but a dud. :)

Ben

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Hi, yeah, thank goodness you had time to get your facts straight. Thank goodness you could do your own research. Thank goodness no one had to experience the worst first. I completely agree that new doctors will cut cut cut first while more experienced doctors would prefer to test test test and refer refer refer before making any final decision. Thank you for sharing that; it is especially important for new members to know that there is a necessity and reasons for more information and multiple opinions before making the ultimate choice.
I once made the mistake of reading a blog post similar to this discission, I was not very nice to the poor girl. She didn't post about her doctors, just that it annoyed her when people referred to an untreatable, or suspected untreatable AVM as a ticking time bomb. I will try this time to have more tact. It can be just as offensive for someone like myself to be told how to or how not to refer to their avm. Personally, mine was a bomb. It exploded, right beside my motorstrip. I am hemiparetic and will most likely never gain back more than 85% of my left body's motor functions (that's a positive estimate BTW). I will not be negative and will hold back what I really want to type, just unnecesarily letting you know that's happening. AVM's are by no way a fun journey. I am glad mine busted so I could get it the hell out of my head. I can't imagine what it must be like living with an AVM knowingly. Luckily, I made it 27 years without knowing about mine. But, pregnancy has the tendency to speed up the tickers on some types of avms and that's how they are discovered, after they explode.
I understand your frustration, but please, understand others have frustrations as well. Before I cut off, I am seriously trying to be nice and not be offensive and i know I shouldn't comment at all but I did because I won't let it go unless I do....another residual effect of my bleed. I hope everything works out great for you and your loved one. Great job with the research! :)

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My AVM is a little larger than 3 cm and on the right parietal lobe with some frontal lobe involvement. I was told that for the size but more so the location that surgery wasn't recommended and it was too large for embolization but I could have Cyber knife. I think I would not have been a candidate for Gamma knife but Cyber knife is a little different procedure so I met the qualifications. I am 8 months post procedure and my AVM has gone from 3 + to 2.8 cm, doesn't seem like a lot, but considering they told me the whole process can take up to 3 years I'm thrilled that it is shrinking!! Maybe Cyber knife is an option for your friend, if not as far as a ticking time bomb my AVM waited until I was 50 years old to rear it's ugly head so for 50 years and knock on wood it still has never bled..

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Great posts!

One of the real issues of an AVM is the complexity. For example, if a DR takes an Xray and it shows you have a broken arm, almost every one of them will put it in a cast. Not much debate about the fix.

But AVMs are different beasts: Size, location, proximity to other 'portant stuff, current symptoms or deficits resulting from the AVM in it's current state. Prior Bleeds? Current bleeds? so I can see why Drs looking at the same reports and scans can come to different conclusions.

We also heard the term TTB (Ticking Time Bomb), but at the same time, the same DR said "Look, you've lived 40 years with no knowledge or problems from this AVM. You MIGHT live another 40 yrs and die from something completely unrelated. But the risk is it could also start bleeding tomorrow, and you would need immediate brain surgery or you would die. That simple. Where ever you were, whoever was the on-duty DR at whatever hospital they could get you to would do your brain surgery. That's a decision you have to make for yourself, and whatever you decide is the CORRECT DECISION for you."

It was hard to hear that, but to us, it was the truth.

Hope this helps.
Ron, KS

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To be honest I have always refered to m AVM as a ticking time bomb because thats how I see it and with that in mind it also gave me the drive to decide that surgery was the best option for me. Surgery in two weeks time i may add eeeek so soon.

As for choices of words I think no matter what you write some one some where may not like it but the end of the day we are all expressing our own thoughts in our own ways and words.... Your partner also needs to realise what we write is only our opinions and some parts he can listento and others he can disregard.

as an example I read a post from a mother who lost her son to avm a few hours after surgery and she was advising people to decline surgery as like her son it could kill you - i respected her opinions as surgery was a very emotional subject to her, no matter how much i didnt like what she was saying I would never have challenged her.

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i was told they could not operate on me and one day it would kill me - 5 years later im having surgery and in two weeks i will be avm free... things change, new proceedures skills and abilities, awareness ext ext so dont take it as red that nothing can be done - im living proof of that
hope it all works out for you

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Very well said Richwag. - Thank you for sharing your opinion.

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I wish you the best with your surgery. I have way more to do than write anything on here that annoys a person who is already dealing with an avm. My apologies to anyone who found offense in what i said about the "time bomb". Free country, say what you want, in AMERICA at least.

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Yeah, I heard the ticking time bomb thing quite often whenever an emergency room visit was required. Personally, I prefer "Sword of Damocles", myself. It's a bit more literate.

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Dear Lea: Even if my AVM's and tumors are located through my spine, and probably, my situation is completely different from yours, I will like to share something with you based on the fact that my experience was very similar to yours. When doctors at the Jackson Memorial Hospital in MIami realized how complex my situation was/is; they put the case to be discussed during their "Friday meetings" when they exposed "interesting" cases like mine. As in your case, the most experience doctors did not want to proceed with the embolization. The youngest did want to try. So, what I did, was, I ask for my case to be reviewed by the most important neurosurgeon, which was also the director of the Miami Project: Dr. Barth Green. It took a while, but he and another experienced doctor gave the "go ahead". I feel like all these opinions from these experienced doctors, put some pressure on the doctor in charge of the embolization, who is an excellent neurosurgeon, but younger at the end. The surgical process was done by this young doctor, but he was also overviewed by an experienced doctor during the procedure. At the end, they decided not to embolized (after 5 hours). In my case, the procedure, could cut all sensations from my waist down. Taking the time to find more opinions whithin the same network was helpful. The question is, Am I feel like living with a potential bomb? Yes, sometimes I feel like it, but as you say, we and people around must be careful on how to call it. My sister in law kind of put it in that way right before the procedure, because she was worry, but things went too far and I was consumed not only by the pain cause by my AVM;s, I was seriously affected by the way how she approach the issue. I lost a lot of weight, I was in a very bad shape right before the procedure, just because of the way how somebody made me feel.

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yes, Rosario, that was what I was trying to say about being carful when talking with a person who has an avm that is active. It is scary enough without other people making it worse. I hope you are doing well now.

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Thanks Lea. you too. Interesting discussion.

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My sons neurosurgeon called his AVM a ticking time bomb also. I
Thought it was a poor choice of words.

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Thank you for your post. I, also, find it fascinating that you got so many different opinions. I always would choose the more conservative. I'd listen to any surgeon who says not to do his own specialty.
My AVM is VERY deep Left Occipital (right next to the most important part of your brain), and both the interventional neuroradiologist (embolism) and neurosurgeon (craniotomy) said that they wouldn't touch me with a ten foot pole. I've had Gamma Knife twice.

With absolutely no disrespect intended, I, myself, call my AVM a ticking time bomb. To me, it is. Eighteen years after my first hemorrhagic bleed (explosion), I am well aware that it could happen again. My lesion is still there (75% smaller), and I know that my loved ones hate the phrase (TTB), but I'm totally comfortable with it. Once again, to me... that is exactly what it is.

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Sorry asking so late I’m new to this site… so they did not do the procedure? How are you now?