How did you come to terms with your/your loved ones AVMs?

General
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I still am having a hard time and plan to speak with my doctor; however, I was wondering how did you come to terms with your AVMs. My doctors have told me I will most likely die from this and I am still scared not just for dying (which I do understand could be now or 50years from now) but for my family as well. What makes it worse is yesterday everything got a lot worse. I had a new MRI and MRA done and now they think an aneurysm is forming on one of the AVMs. Which in turn has just terrified me even more.

Idk I am just trying to find the best way to help me go back to a fairly normal life

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Hey Andrew, sounds to me like you should seek another opinion. I hate to b the google expert but lots of literature about treatment in the 3cm size range dependant on location. Is Mayo clinic in Minnesota an option for you to seek another opinion? Very well reported on n the neuro area. Take Care, John.

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Mine are too big to be treated like a 3cm but even such I can not afford to go to mayo. I am on Medicaid (thank god because it at least gives me peace of mind if something happens right now my family won’t be stuck with a ton of dr bills). I live in Illinois so it wouldn’t be an insane drive to go but if I were insurance I don’t see helping at all

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Hi there Andrew :slight_smile:

After some time reading on this sub, I have learnt its not uncommon for differant consultants to have very different attitudes towards AVMs so I think it is very important to seek a second opinion. I have read of people told their avm is untreatable from one consultant then been told by another that treatment is available for them.

I have a large AVM (roughly 5 - 6cm) in my left occipital lobe. I have lost my lower right visual field (in both eyes), which isnt such a problem other than sometimes bumping into things in my blind spot but this is what led me to be diagnosed. My consultant said that I will undoubtably lose my entire right hand visual field if I have a crainiotomy (making me legally blind). Like you, my AVM is too large to have gamma knife alone. My consultant concluded that I will have several embolisms to shrink my AVM and once it is small enough I will have gamma knift to eliminate it.

If not I’ve read of people who do not have treatment as an option and have gone on to continue their lives and adapt their life style to reduce chances of a bleed (no heavy lifting or intense excersize, no smoking/alcohol ect).

I know it feels awful coping with the diagnosis and feels like a “ticking time bomb” but I count it as a blessing in a way that atleast we know now so can adapt life style and seek help/advice or possible treatment to reduce the chances of any bleed.

Alot of us have had to call, write reports, email, convince GPs to back us and do everything in our power to get help and be taken seriously even though we shouldnt have to. But we are all in this together to support and comfort one another in this journey.

As for family, its not easy. For me, my family went into panic mode when they found out about my AVM. It was important for me to communicate with them what kind of support I need. To both educate them and myself about the condition. For me I needed my family to try to stay strong for me and treat me similarly to how they did before we found out. I found it depressing and demoralising to be treated with kid gloves and not encouraged to do what I can for myself and make the most of every moment right now. Independence is very important to me and I refuse not to make the most of my time when I am able to get out and about. I refuse to take this condition as a death sentance or let others treat me differantly as if it is one. It is important to remember you have had these AVMs all your life without knowing it and you have lived up to now.

I wont lie, I am still terrified. I will have an angiogram in the next month or so and then treatment starts. Even though the risks with my treatment plan are considerably less than with a craniotomy, I am still aware there is risk. And it feels frustrating feeling as though my 20’s and promised “prime of my life” is being unfairely interupted by this condition. But have to keep going and try to remain positive.

Pm me if you ever want someone to talk or vent to, sending positive energy and wishes over to you :smiley:

Corrine

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I am looking for another opinion I am supposed to meet with a new neurosurgeon sometime I have to call in the morning to see when. My cousin has a friend who is a neurosurgeon who said he would take a look at my MRAs and MRIs I just have to get a copy. I’m glad they were able to find something they think will work for you. I’m hoping the next neurosurgeon I speak with will be able to help. I stay strong for my family none of them see me worry (well I’m sure my wife does but I do my best to stay strong and upbeat about it). I’m am trying to make myself be more ok with this and I do keep telling myself and my family “I have had these since I was born, I was completely fine then and I will be now”. I Know how you feel being terrified. I wish you the best of luck on your procedures.
Thank you I will if I feel the need to, if you need someone to vent to or talk with I am here as well. Thank you both for your responses
-Andrew

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Hi Andrew,

I am really happy to hear you will be getting some more opinions from differant specialists. Hoping for some good news for you too, I know how difficult being “in limbo” stage is, waiting for information.

I think maybe you are putting too much pressure on yourself. Feeling worried, scared, emotional are all completely natural -to be honest if my loved one had an AVM and didn’t show any concern or emotion about it, I would probably be more worried than if they were open about having concerns about it.

I was the same as you at first when I was diagnosed but holding in all these feelings made me break down. When i finally had to accept I needed help and talked to my dr he said " if any of your loved ones were going through what you are, wouldn’t you want them to feel like they can confide in you?" And that really stuck. Counselling really helped too, being able to share my darkest thoughts with a professional rather than my loved ones.

I have now started cognitive behavioural therapy which I highly recommend if its available to you. Today my therapist put these titles on the white board: situation, feelings, thoughts, behaviour and physical effect.

He asked me what things are happening in my life that im struggling with, for me:

situation: 1. my condition, how its changed me and associated risks 2. Peoples (aquantances,friends,family) reaction to my condition

Thoughts: “life is unfair” “this is interupting my opportunities” “people see me differantly, as weak or less able” “people pity me” " I am a burden on my family making them worry" ect

Feelings: sad, frustrated, angry, emotional, anxious

Behaviour: avoiding talk about condition, isolating self, comfort eating

Physical effects: trouble sleeping, weight gain, tension in body, added fatigue

Then he asked me to look at the white board as an outsider, and explained, its easy for people to say “just think positive” when they dont see the full picture, even if someone wouldn’t derive the same thoughts in response to my situation - if they were given these thoughts, its more than understandable looking at the feelings,behaviour and physical effects in response to those thoughts. That these responses are not pathetic or weak, they are natural. I dont have control over having this AVM or its side effects right now, I dont have control over peoples reactions or opinions. However with guidence and work, I can manage my thoughts and behaviour to help cope in a healthier way, to nurture myself more and treat myself as a bestfriend rather than an enemy that I put down.

I hope some of this might help you. Wishing you the best of luck pursuing further advice from other specialists. And thankyou, I really appreciate your support.

Corrine

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Andrew,

I believe Dr’s at Barrows will take scan information and reports and give a second opinion on treatment options. You can send the information rather than actually have to go all the way there. I think I’ve seen people report that getting a second opinion like that is a matter of $100 or $200 which might be an option… at least for an opinion.

Richard

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Actually yeah that I might be able to afford. I will have to call thank you

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I think also Johns Hopkins, too.

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Hello Andrew I think everyone here has given you good advice. I talked with 8 physicians.

I wanted to speak to your aneurysm concern. I have two near my AVM. The doctor called them Flow Related Aneurisms. I’m not excited that they are there and they did impact viable treatment options, but it is what it is. The physician said that once the gamma Knife treatment begins to shrink the AVM the aneurysms should also go down. It’s not a function of a weak vessel wall. He said it’s like a river bend and the water continues to hit the far bank. This is because the arterial blood does not go through a pressure reducing capillary bed but straight to a draining vein.

I wish you well in your next steps. And as you said, this has been there since birth. Changing some things like weights you lift may mitigate risk, but worrying mitigates no risk.

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I would ask for more opinions and I would not give up. It seems to me that 3 is small and could be treated. Everything has a risk but risks should be taken. I understand you have hard time…I did too…ask for more opinions and make the best decision that you can. That is all you can do. I do not agree that you will die from the AVM or with the AVM. I am sure there are other options in between

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Hi achap89,

Coming to terms with an AVM is different for each one of us. You can read in my profile how mine was discovered. It’s an unpleasant shock to say the least.

I came to terms by doing lots of research about AVM’s in general then consulted with my surgeons on mine specifically. Google, Bing, Yahoo, etc. were not around in 1992. So I was at the library a lot.

Of course the questions foremost in our minds are what permanent deficits are possible or likely?

After all the scenarios of ignorning or having surgery were played out in my head my surgeon put things in perspective: he said that the short term risks of sugery now are far less than the long term risks of doing nothing. Should the AVM bleed when I’m in my senior years, life will likely be unpleasant.

Haven’t never been married and no children my decision to have the surgery was a bit easier to make.

One thing I’ve included in all my posts on this site to our AVM brethren who are scared as hell is this: get in your mind that there is no other option for you and your family than getting better. None!

You must stubbornly believe you will be back to your pre AVM condition. Thousands here prove that there is great and long life after AVM.

We’ve all been where you are right now. Reach out. We’re here to help.

Bill