How do you decide?

General
1

How on earth do you decide what to do???
In July this year I discovered I have a Grade 2 AVM, Left temporal, if it bleeds its most likly to effect the speech area. my life time risk is 25-50%, i’m 36yrs.
I’m lucky I have no side effects except possible swelling behind eye’s

My options are to do nothing, radiosurgery with possible embo or microsurgical excision.

How do you decide what to do? i’m going round in circles not knowing if I can live with this…I would love to hear any advise or experiences as I feel like i’m going mad…

2

Hi Daniella,

It’s good to have choices, but so hard to make a choice like this, right?

My husband and I thought about it this way: take the risk every day for the rest of his life, with the chance of a bleed at any time and place, or take the risk in his chosen hospital in the care of an AVM expert.

Bleeds can be fatal, and the results of a bleed are unpredictable. We were also told that even a so-called stable AVM is “stealing” blood from the other areas of your brain, as well as possibly recruiting new feeder vessels and growing in size, which can lead to other problems besides a bleed. So, once we realized that serious and deadly outcomes were possible with or without treatment, we compared the risks as best as we could. The percent-risk of my husband’s treatment was less than his lifetime AVM risk, and that was the deciding factor for us.

Since the numbers were so fuzzy, though, a lot of it came down to being able to trust his surgeon. We had done some googling to see where his surgeon had been to school, whether he had published articles about AVMs, whether AVMs were one of his specialties, how many he treated per year, and whether he was familiar with all of the treatments so he could give us the best recommendation of which treatment would work. We were prepared to get a second opinion if we couldn’t get enough info in support of his doctor.

If you decide to take a treatment, I believe the least invasive option here is radiosurgery, then embo (a close second), then surgery. My husband wasn’t given a choice, but the way that I understand the options is that you help bring about the best possible outcome by treating the AVM before a bleed, and by doing so in the least invasive way.

You can probably tell that I favor treatment. I don’t mean to push you in that direction, but I want to encourage you to think about the possibility that a minimally invasive treatment could be the safest choice.

I can imagine how hard this is for you. Please keep us posted on your decision process!

-JH

3

I really like JH’s response. I am 34 years old and my AVM bled before I knew it existed and had really turned my life upside down. I wonder if it had been found and treated before it bled if today would be different. JH is right about investigating the surgeon and neurologist. I was unable to make rational decisions for myself at the time of my bleed and the people around me did the best they could and Gamma Knife was performed and only months later did I learn there were other options. You are blessed to at least make your own choice so consider and research all the options and you will know what is best for you.

You are not alone. Message me anytime if I can help. I have been researching my butt off (almost literally thanks to Keppra).

4

Daniella, I also “had” my AVM on my left temporal lobe. The first neuro doc I saw said I should do nothing…A good friend of mine told me that I must at least get a second opinion, so that’s exactly what I did. I found the best neurosurg doc in my area and when he saw my 1st MRI results, he wanted to see me the following week. After having tests done by his hospital, I was told doing nothing was not the right choose for me. Because of that, my only decision was to have Proton Beam Radiation treatment. I did have a brain bleed before the radiation started to remove my AVM, but 2 years after the radiation, I was AVM Free! Therefore, I believe in at least getting a 2nd opinion, before you make a decision. I wish you the best!

5

I was recently faced with this decision as well. I discovered I have an AVM, back of right frontal lobe in Sept. It was an incidental finding, I had never had any symptoms. I went about my decision making very similarly to JH. The chances of it bleeding are much higher over my life than the risks in treatment. Not only that, but I like the idea of being in control of it more than it being in control of me.

I also agree with having trust and confidence in your neurosurgeon. I have felt completely comfortable with every move mine has made so far.

I am currently in the middle of 3 embolizations. I had the first Oct 27th, the next is Nov 15th and then the week after Thanksgiving. They will re-evaluate then and we will decide if/what is next.

Good luck!

6

Hi Daniella. There is no easy way to get rid of an AVM. Whatever you decide to do…we will back you up and support you! Please keep us informed as to your progress!

7

Hi Daniella,
I had the exact same AVM, same area, everything. I only found my AVM existed when I started to have small seizures and was recommended to get a CT. The options are very limited and all have upsides and downsides, risks and advantages. I spent a lot of time trying to determine what I would prefer. The notion of a brain surgery never made the list for me, I couldn’t consider it, because the risk the surgery posed with effecting the rest of my brain, particularly speech and memory.

My other option was Gamma Knife surgery, which i chose, despite the risk of haemorrhage I was happier to choose this surgery. I was very lucky at the time I was admitted to hospital as there was a conference of brain surgeons in Adelaide and my Dr took my ‘case’ to the conference and they all gave their opinions. To the best of my memory, out of the 12, only 4 recommened brain surgery the rest choosing Gamma Knife. Obviously each scenario is difference and you are in a very hard place right now but trust yourself, you know what is right for you, dont be forced or pressured. At one point i felt like a test dummie with one Dr always suggesting the surgery, I felt maybe because i was young and healthy i would be a good test case to them. Keep your options open, talk to people, make sure you get a few opinions and like i said, do what you feel comfortable and happy with. Maintaining sainity is bloody hard but you can do it :slight_smile:

The Gamma Knife surgery i had went excellently, one day in hospital, non invasive and I was home for a pizza dinner with my family that evening. My AVM was obliterated within 2 years and I couldn’t be happier. The only thing that’s on my mind now is the long term effect of the radiation, from CT’s, angio’s and Gamma Knife. But opposed to having my head opened up, i was a lot happier!

Keep an open mind through all of this, take it one day at a time and focus on the positives you have, if you have any questions let me know. You’re not alone :smiley:

Marty

8

Hi Daniella, I did not really have any options, the chance of a bleed was 75% and I have a 12 year old son. I also did not get an option with how it was treated. I had to have a crani but I have not regretted it. It sounds a lot worse than it is, yes things can go wrong but that can also happen with embo and every other option you have. You could do nothing ( I was going to do nothing and let nature take it’s course until I thought of my son going thou some thing like that.) The chance of some bad side effects are more likely with a bleed because it is not controlled and you do not have doctors on the spot to help.

It is a harder to decide if you don’t have kids, but if you have them there is really not much to decide you would have to go for it to give yourself the best chance so you are there for your kids to grow up.

Any way best of luck and keep us informed, it is a thing only you can decide, stay positive and believe in what ever you decide.


Kia Kaha



DM

9

I agree with JH, My daughter was 19 when her avm was diagnosed due to headaches. After many quite nights of thinking she said to me in the bravest voice ever. “Mom I cant wake up every day and wonder if today is the day!” She will be having her 3rd embo on Nov. 23rd and so far so good we are getting rid of the beast in her head! She continues to go to college and move her life forward. BUT she feels like she has some control now! Everyones choice is very personnal, I wish you much luck with your choice but making the decision in itself will help you to feel as if you have some control! God Bless you and your family on this journey, please keep us posted!
Lisa

10

One of the keys in helping us decide was geographical!

We live near a town of 300,000 people, but often spend time in western Kansas with relatives. “Out there”, you are 30 minutes to an hour away from the closest hospital. They are SMALL hospitals, few would have a neurosurgeon on staff.

From there, you are probably 1-2hours away from a big hospital via helicopter, if the weather allows it.

I have a relative living out there who had a heart attack. Her husband drove her to the hospital (30 minutes). They checked her out, realized she needed more help than they could provide, so they call for the air ambulance. Only the weather was below minimums for the aircraft to fly in. Result: She died there. POSSIBLY, but no one knows, if she’d lived where we are, being 20 or so minutes via ambulance to a major hospital, she MIGHT have lived…

With that in our minds, knowing that if we were “out there” and the AVM ruptured, the surgeon you saw would likely have NEVER operated on an AVM.

Being able to pick the time and the surgeon really made more sense to us.

Hope this helps.
Ron, KS

11

I agree Daniella, it’s a very difficult decision to make. Rather than compare what I went through to your decision of how to “treat” it, I’ll just reiterate what Barbara said and tell you that we’ll be here for you no matter what decision you make. As you probably already know, every AVM is different, but there’s a lot of good advice on here to help you make a decision (I especially like the geographical argument by Ron), but again the decision is yours. Trust your doctor and don’t be afraid to ask a lot of questions. It’s your life and you certainly deserve that. Best of luck to you always and let us know how you’re doing. :slight_smile:

12

I am not a avm, but my girlfriend is. She had a total of three angioplasty including the actual surgery that was to repair the avm. She was lucky it was not life threating …so she was able to get the doctors to take their time and makr the right decision…it seems like you have that choice and that is a major plus…talk to everybody you can and weigh all your opions. Let us know what goes on…good luck on all you decide.

13

Dear daniella
it’s all good you are not going mad.
With all this options there are high risk and it’s hard to tell which would lead to the best outcome.

Personally i feel doing nothing is a non-option as you will live in fear of a bleed every living second of your life, and if something happens to you (touch wood) your family will forever to faced with the what ifs (what if i’d made sure daniella had gotten treatment earlier, it’s all my fault ect.)

Radiosurgery i find will leave me going just as mad as you’ll have to wait a few years to find out whether it has been sucessful.

Sure you may have a scar if you pick micro surgery but it’ll give you more peace of mind you will have instant results.

this are just my thoughts without taking into account the risk associated with the treatments. It’s a really personal choice and i wish you all the best

felicia

14

Hello Daniella, my name is Nicole. I lived in Titusville, Florida for 6 years, and it was a wonderful, amazing time! My AVM was right temporal when it ruptured, it did affect my speech, both the creation of language and the mechanics of talking! I had to write on a dry erase board for 3 months after my craniotomy! I didn’t know there was anything wrong before the rupture! Now looking back its possible I had some symptoms… Would I have had the guts to go Gamma Knife I can’t say for sure? Now 2 years later its my understanding Gamma Knife is the only way to go! But I had a rupture which involved a helicopter ride! And let me tell you a Stroke is NOT the way to go! Recovery sucks! This commentary probably not helping much? Again all my docs said I should have had Gamma knife prior, but I didn’t know!

15

Thank you all for these responses.
As I'm sure lots of you know this tool of being able to communicate with others who know what its like is so valuable in terms of information, advice and support.
These AVM are scary, even without side effects you can never unknow and its always on your mind.

I still feel like i'm going mad but are taking a few months out to ithink things though.

It's so wonderful to hear of peoples support and I will keep you all informed.

Again Thank you all

Daniella xx

16

I'd say you can't leave it forever, I'm sure you've been told the increase of a bleed happening. Emboliusation didn't work for my son, he went to theater to have it done, they started it then had to stop as his vessels were too knotted up around the AVM which could have been fatal. I was told this was the safest option and the doctots work so slow they can stop in time to prevent complications. Radio-Surgery was the next safest option. My son had it last year when he was 8. Twelve moths on and he has had his MRI scan to ceck his AVM and it appears to be gone.We wont know for definite till next year when he has his angeogram. but doctors are very happy as I am with how things have gone. Ethan was back to normal almost straight away!!! He has't had any hair loss or suffered any side effects so far. ( God Forbid).

Please have treatment!!!!

Ask doctors what treatment they would give their Children I always find the answer to that is the one I'd go with...xxxx Good Luck if you have any questions my email is ■■■■■■■■■■■■■■■■■■■■■■■

17

Daniella,...

My apologies for replying at such a late time, but I have given this a tremendous amount of thought.
1st,...the obvious:
We are unique individuals, as no two persons are alike, (even identical twins have marked differences ie. mannerisms, personalities etc.)
In turn,...our AVMs are unique, individual, and have associated risks with each. Many factors must be taken into consideration. Geographical, (as Ron so eloquently stated), family support, (family looking out for you), work/employer support (FMLA), medical insurance and coverage, time for rehab and recuperation, the list can go on and on.
2nd,...YOU are the master of your fate. You must make the decision that will have the most positive effect on your future.
3rd,...If there is any doubt,...get another opinion from another neurosurgeon, (in relation to your options), then another, then another. If the consensus is unanimous, well you have explored all of your options. Ask questions, research,..learn as much as you can, then go back to your neurosurgeons as an informed patient with pertinant questions.
Information is knowledge,..knowledge is power,...the power to make the correct decision for YOU.
4th,...There are positives and negatives with your three options. (please see my page for details on MY decision) You have a tough decision to make and it's not going to be an easy one either. Speaking for myself,...In summary,...I am now 57 with a cerebral AVM. I have a 4% chance of another bleed. To me,...that is a 96% chance that I won't. As I have stated before,..."I'll play those odds".
But that is me,..not you Daniella. I know for sure you are on the right track,...asking for input and advice from other AVM Survivors, but the bottom line is,...IT'S YOUR LIFE,...YOUR FUTURE,...and yes,...YOUR DECISION.
I really cannot think of anything else to add, knowing it would be redundant from what the other members have posted. But know this, You have my empathy, sympathy, my thoughts and prayers, to help guide you to the decision that will be the BEST for YOU.
Please keep us posted and up to date with your thoughts and eventual decision, and know we,...The AVM Survivors are with you all the way.

William

18

I'm in a similar situation about being unsure w/ regards to what treatment to follow. I hope that you're journey in figuring the best treatment plan for you is going well.