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AVM Survivors Network

Should have gotten another opinion

I seriously regret not having gotten a second opinion concerning my AVM. October 9th of 2012 is when I had a seizure that prompted the discovery of the AVM. I could have had surgery or radiation and embolization. My 1st doctor that I really liked and appreciated his opinion was straight with me. He told me that the AVM was in an area that could or might affect my speech and movement on my right side. He told me if it were him he’d opt for the radiation after embolization. I had very young children at that time. He realized that. But I still wish I would have gotten another opinion. As it stands now, I am still having seizures. I am sure due to all the damage that was done from the treatments. After my original doctor left another that was in his same group picked up my case. I still had an area that had not been treated, so I went through a 3rd radiation treatment followed by embolization. I am quite sure that this seriously messed me up. I go this January of 2020 to see if my AVM is gone. Hoping and praying it will be. At least there will only be the seizures to worry about. I often wonder if it would have been different if I had had a second opinion…

Melissa,

I know what you mean. What I’d say is it makes great sense to get a second opinion when the options are still in the future but you should never criticise yourself for taking one path when there was more than one presented. You can never go back and you shouldn’t regret. Even if you sought a second opinion, there’s every chance the same recommendation would have been made and to wonder after a difference is understandable but I think not the right thing to wonder about after the fact.

One of my favourite poems:

THE ROAD NOT TAKEN

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Robert Frost, 1916

Don’t think of going back: both paths still look the same and the outcomes of both are just as unknown.

Hope this helps,

Richard

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I also often wonder if I should have gotten a second opinion. My surgeon was very clear about the risks and he came highly recommended . He recommended embolization and he felt confident that it would be all I would need; but there was the possibility that he would perform a craniotomy if needed. I was scared to death that I would have another hemorrhage, and proceeded with the embolization. Unfortunately things did not go well and I began hemorrhaging during the procedure. So, the craniotomy was performed and to make matters worse I developed hydrocephalus . They then drilled a hole in my skull and inserted a plastic tube through my brain and into the ventricle in the center of my head. It’s been a long difficult road to recovery. My balance is bad, I’m dizzy every day and the coordination in my left hand is awful.
Countless times I’ve wondered why. Why didn’t the embolization work out? Why the hydrocephalus? Why, why,why. As time goes by I wonder less and less. As Richard said each possible path has their own possible good or bad outcomes. I may have permanent deficits but my avm is gone and I am doing my best to move forward with my life.
With that in mind. Before all this I was an avid golfer. Actually quite good and it’s been tough getting back out there. After almost two years of hard, painfully slow progress , I am walking eighteen holes again. Hooray :smiley:

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We are often involved in an inexact science…so to say. The brain is such a complex and amazing thing that we haven’t figured it out yet. I got a 90% chance of success in the assessment of my gamma knife option. I said to my wife, that’s as good as it gets, there is no 100 % in this business. I mean there are no absolutes in possible successes, effects, side effects or potential related things. I was fortunate to hit the 90%, I would likely hold a different opinion if not the case but I often use the saying “hind sight is 20:20”, and it is so true.

I think a second opinion is never a wrong choice, but it might not be the right one given the circumstances…does that make any sense?

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Hey Melissa,
I have to say DickD, Cancrd and JD12 have all made some excellent points and I hope I can only add to their info and advice.
I got that ‘2nd opinion’, I investigated options and I’m sorry to say things still did not workout the way it was all planned. The plan was craniotomy, fix, heal and return to life as I knew it. I pushed myself to make this happen. From the initial surgery I recovered quite well. Not 100% admittedly but OK, I could function. But as it turned out things weren’t OK and I required further surgery. I’ve now had 6 neurosurgeries, with each one hitting me harder and harder, and I too wondered about all of the (what I call) ‘What if’s…?’ "What if I’d done ‘X’?..What if I hadn’t done ‘Y’?..and to be honest, it damn near drove me crazy. I was second guessing everything.
BUT
As DickD says “You can never go back…” If we could I don’t believe there is any amongst us who wouldn’t. As for the ‘What if’s’, that’s normal too, again, I don’t believe there is any amongst us who haven’t. But the often painful reality is we are here, we can get stuck (and I have before) going over and over the ‘what if’s’, but we have to move forward (somehow). We, the patients, take the educated advice of our medical teams, but even they don’t know ALL of the ‘what if’s’ that can occur.

A BIG part of my ‘What if’s’ was "What if another surgeon had done the surgery, could the final outcome have been better??? And my answer was ‘YES’, but in saying that the other question that I need to ask is “could the final outcome have been worse???” And again my answer was ‘YES’. It took me a LONG time to learn to accept this fact.

My boundaries/limits have all changed and now I have to learn to live within those new boundaries and I HATE it, but this is where I’m at. I have to accept that.

Merl from the Moderator Support Team

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Thanks for posting this Merl. I don’t know how many times I’ve had the
“what ifs“ about the surgeon. Just didn’t really follow it through to your very insightful conclusion. It just as easily could have been worse. Maybe I can finally put that one behind me

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Just adding two cents to the conversation. My daughter, the nurse practitioner, has told me on more than one occasion (as I have gotten 2nd opinions on I think 6 of my different “damages”), Dad, if your doctor is not open or cooperative about a second opinion, that is a sign that you should run, not walk to a new doctor. Any doctor who puts his patients before his ego will welcome a second opinion. A second opinion will either 1) Prove that your doctor is a genius or 2) get you, the patient, some better answers on what to do.

Hands the mic back to Richard and goes to read more.

TJ

P.S. I love that Robert Frost poem - I still have memories of my favorite English professor reciting/performing it for our class. And since that’s a couple of victory laps over 30 years ago, that’s saying something about his performance and passion for good poetry.

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I completely agree. However, I think getting a second opinion is only to be done before going into surgery. I don’t think it is a good idea afterwards to question one’s choice.

Even if you look down both paths as far as possible, you can never tell whether one route or the other will play out best. Neither us, nor the doctors can really tell whether we shall have some risk or deficit arising from an operation – that far down the path is not visible.

So, @Melissa_Joyce_Lott_C, I really hope you can allow yourself not to doubt the choices you made. You made them in good faith. The doctor you saw gave you good confidence at the time and that was important. Half of deciding what to do is about getting that comfort and confidence from your doctor. The fact that you got some unwanted issues is something that we all face and I don’t think it helps to question your decision. Be ok with it. We all have to make tough choices at a time when we are not feeling well at all.

Be of good cheer!

Richard

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Be Strong and pray for the best of results. I feel you, my son had the same encounter, he was born with brain AVM, had embolisation on his 1st Birthday, had Gamma knife when he was 12, living normally as normal kid, go to school, college and was towards the end of his diploma course, at 24 his AVM relapse, now he is 28 and still in bed at ICU. We can only be thankful that we are still able to see the next day.

Regards from Brunei.

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Always always always get a second opinion, even if you have to pay out of pocket. That’s what I did. My circumstances were different. You can read the longer version in my profile.

The Reader’s Digest version: after a head-on collision resulting in head and brain trauma the first doctors said all is fine. Just be patient as these traumas are slow to heal. For no other reasons than piece of mind, and it’s my head and brain, I wanted a second opinion.

The first doctors completely missed the ‘anomaly’ on the MRI images. The second ones found my asymptomatic AVM. I opted for surgery. Very unpleasant but well worth it. This was in 1993 when I was 33. No permanent deficits and life is good.

Doctors make mistakes. And sadly these days they are at the mercy of insurance companies bottom lines. Practicing medicine these days is not like the past. So take charge of your health. Get other opinions even if you pay for it!

And remember everyone here is or has been where you are right now: scared, confused, indifferent, angry, etc. So reach out. We’re all here to help.

And have a very Merry Christmas and Happy New Years!

Bil

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I did try one time after I already started treatment. It was one of those things that you pay $100 and the top of the line guy looks at your case and give you his opinion. I can’t think of his name, but I am sure someone else on this site will automatically know his name. Sadly I was told after sending all the information I could gather, that they would rather start from scratch.

That’s great. Not sure about yours but my second opinion was at a completely different hospital. I’m guessing now however that it’s a bureaucratic nightmare to get any opinions.

You’re in the best place to be for medical technologies and the best trained doctors and nurses. Try not to worry if that’s possible. And have a great Christmas and happy New Years Eve! The 31st is my birthday. So I’ll toast to your good health!

Bill

Instead of getting a second opinion, or as well as getting one, I suggest anyone who has to make such a decision that they do their own research. the information is out there and accessible now which it wasnt unfortunately when my daughter had to make her decision. It’ll be time-consuming and not easy but the ramifications to your life are huge. What are the actual risks of treatment? (And push your doctor to explain all the risks not just a couple). Compared to no treatment? What are the risks of another haemorrhage? Maybe, not as high as you might expect. Compare the percentages. the risk of Short term memory deficit was never mentioned to us before consenting because of the area of her AVM, however, many parts of the brain affect memory. Also, it was never mentioned that onyx can migrate to other parts of the brain during an embolisation.

I’m a big fan of second opinions. One literally saved my life when it turned out I had cancer, well over thirty years ago now. But when I had the embolization, it was on an emergency basis, one day after the our-of-the-blue stroke. No second opinion for that one.

After that I did go down the Cyberknife path, a year later actually. I did try to get opinions regarding the radiation exposure, because about a third of my cerebellum was in the radiation field when I was treated in 1986. The cyberknife guy wanted me to hand carry back the radiation records, films, whatever they had. And the hospital where I was treated keeps those records forever. But, it turned out, mine were lost, misfiled in a huge archival warehouse. I talked to a radiation oncologist there, to the last person who had seen them about ten years prior, and by phone to a good friend who headed proton facilities at a different major hospital, and to one of his colleagues.

I do wish I had consulted with someone about possible surgery though. I am so with you there. There wasn’t an obvious person to go to and I was so worn down, and so upset about the missing records. Plus, all this time, I felt a lot of pressure from my family where I think I really needed support.

Right now I’m in limbo. I had a bad experience, possibly random, a terrible migraine/vomiting a few hours after the first cyberknife. Then I wasn’t able to do the next MRI because for some reason whenever my pacemaker was put in asynchronous mode for the test, it was “kicking” me too hard to lie still. Basically I bailed out of further treatment.

I’ve had massive issues with trusting doctors for decades now. I’m one of those people who is calmed by getting as much information as possible. I really need to start again, to at least find out where I am with this thing. Right now I am doing great, having recovered most of my balance and physical abilities - it’s hard to want to do anything to change that. But I feel like the sword of Damocles is dangling over my head.

Sorry to unload like this. But I so much identify with that “what if”. Don’t get me wrong, it was the most amazing sequence of events that I ended up changing plans so I was in a large city, with a great hospital and a right person on duty the night I had the stroke. Gotta give my then-teenager for talking me into going to the ER instead of urgent care, too.

Anyway, for you, getting an opinion on whether or not you should have done this or that doesn’t make sense. What might be helpful is to get another opinion about what can be done to mitigate the issues you have now.

As a long term cancer survivor, I can tell you that this regret about choices is overwhelmingly common in that community. Sometimes doctors just didn’t have the information because there just wasn’t data on what happens long term, and sometimes it’s just that individuals reacts so differently to the same treatments and they don’t know why. The important thing is to get a medical team who recognizes the issues and is willing to help figure out where to go from where we are. I can’t e.g. go back and reduce the amount of radiation my heart got, but I can have cardiologist who keep a close eye and do appropriate testing.

There are I think several institutions that can give remote second opinions for AVMs. I’ve never had an issue with insurance covering second opinions although there is the usual co-pay etc.

Bottom line: anyone who has on-going issues should consider getting other opinions for how to proceed. Especially in a field where so much new information is being learned.

For my surgery in January of 2018, the 5 year risk of a brain bleed was “up there” - I honestly do not remember the exact number but it was way more than the risk of a severe auto accident in that same 5 year time frame. The risk of doing the surgery/embolization and having significant “issues” like, well, like I have was less than 1%.

I got the 1%. Every morning when I wake up, as soon as the fog clears (in my head - I don’t live in England - we just get clouds all winter), I remember what my pastor says almost every Sunday. “God woke you up this morning, he didn’t have to” (A chorus of amens - I go to a very diverse church.) “He gave you something to wear and told you to come to church, he didn’t have to.” (more amens). So, he brought me here and he didn’t have to. He could have sent me somewhere else, he could have told me to go push grocery carts at the store down the street. But he brought me here. (more amens) and he brought you here (you get what comes here?) So how about we just put all of that worry of the week, put it all aside, set it down and spend some time listening to Jesus and talking to Jesus to see if we can find out why. Why did he bring me here? Why did he bring you here? Why are you on this group?

What does God have planned for you? What does God have planned for me?

Every day, I’m feeling more and more certain that you all are part of what God has planned for me. How? I don’t have a clue - but I don’t need to have a clue.

I just need to hold his hand and follow him. And that’s hard some times.

And it’s really really hard other times.

But then there are times when suddenly you see it more and more clearly. And then you look up and say, “Thanks God. Thanks for the reminder that you’re leading this show.”

did not expect to grab that mic tonight. Wow. Sets it down on the table and sits down to gain wisdom from others.

TJ

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Hi Melissa:

We live in a world of woulda, coulda, shoulda’s. You did not make a mistake. You did what you thought was best for you. We all pray that each procedure will eradicate our AVM’s, or at least make them smaller. Try to keep positive thoughts while you are waiting on your Jan 2020 procedure. I will pray that your treatment goes well and your AVM will be gone. Remember P&P (Prayer & Patience).

Sharon D…

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If you have the means - always obtain a second opinion. Even if you wish to stay with your current team, check out another team of experts, for peace of mind. For many of us, this is brain surgery …

Barrow Neurological Institute sees more Neuro patients than any other facility - look up Dr Michael Lawton - he’s world-renowned