I was recently diagnosed with a brain AVM, located in the lower left occipital lobe. I started having flashing lights in my eye with headaches and blind spots, so I went into the medical office.
I have been put on some restrictions for now. I have an angiogram pending to determine if we could do surgery.
So, I guess my worry and stress now is the risk of having a rupture and the consequences that may come with that as well as being nervous for any side effects if we do move forward with surgery.
I am having quite a hard time really taking this in; sometimes I do feel depressed about it and I now find myself thinking about this every single day, and having trouble just enjoying my day to day life.
Any advice would help.
My AVM ruptured in September last year, I never knew about it till it ruptured and bled and caused devastating outcomes. now 6 months since the bleed I’m waiting for my appointment in 2 weeks for stereotactic radiosurgery.
I wish I knew about it before, your lucky, follow all instructions and get rid of it. the benefits of any procedure out weights the AVM bleeding and causing a Haemorrhagic-Stroke.
Hi Butterfly, Welcome to Ben’s. Pain and fear are, unfortunately, a common theme here. That’s why we can relate and help. Often I search for those kind words of wisdom. Usually I fall short.
Your stress and worry will probably make you a better person though that’s not much comfort right now.
You’ve done something huge by reaching out and asking for help. I and many many have failed to ask for no good reason. Congratulations. I’m proud of you. Best wishes, Greg
You are right, I am lucky to have found it before it ruptured. I am sorry to hear about your rupture and the effects of it afterwards.
I definitely agree with you, the benefits of any procedure will be for the best.
Thank you sharing!
Thank you! I really appreciate the kind words. I hope we all push through all of this.
Hey, @Butterfly92 welcome to AVM survivors! (Survivors! There’s a clue in the name!)
I think all of us in your situation feel or felt exactly the same! Life has taken a sudden, unexpected and unwelcome turn but honestly there are good outcomes to be had and the people round here can attest to that.
I can tell you I felt very much the same as you a number of years ago but I would say that for me, the anticipation was worse than the outcome. It took me a long time to feel “ok” post op – much longer than seems reasonable – but I’m basically back to being me. I don’t think I have any side effects from surgery.
Moments like this shake you to the core. I took my health for granted for about 50 years and then BAM! on the rocks like crazy. It’s normal to feel how you feel at the moment but learning a bit about what this is all about may help and taking a couple of self-help steps can help as well.
What can you do?
One of the doctors I spoke with recommended avoiding anything that puts your blood pressure up – chocolate, coffee/caffeine, smoking, alcohol, lifting heavy weights or straining – things like that.
The other things I did were to buy myself a medical wristband, which helped me relax about being out and about with the public: if anyone found me inspecting the carpet unexpectedly, they might dial 911 (because I explicitly said to on my wristband) and the hospital would know my ID and condition as a starting point. I also preferred to be working among people than being left on my own in the house for 8 or 9 hours a day.
These are some of the simple, positive steps that you can do to help yourself. I think it helps not to feel completely helpless about it.
A point of note on yours and @FredM’s comments on an operation… sometimes not having an operation turns out to be the best step. Sometimes it’s just too invasive to go doing anything in there – more damage can be done than it is worth – so when you get that angiogram, you’ll need to find out what your options are. However, every reason to think that something could be done at this stage.
Welcome and very best wishes,
Thank you for the advice and support!
I like the idea of the medical wrist band if just to have some peace of mind, should anything happen. I will be looking into this. It’s all so scary and stressful but being busy is definitely helping some. I agree, I prefer to be at the office daily, just to keep my mind elsewhere. It helps to not sit at home and think about this all day long.
I’m glad you are back to being yourself and have no side effects from the treatment. Definitely gives me hope in case we do move forward with surgery.
Thank you for the encouraging words!
@Butterfly92 Hello and Welcome Glad you found the site and its perfectly normal to be stressed. I came on here when they found my avm/davf and had a proper freak out. I am in California near Stanford not sure if you are close by but if you are and want to meet up I am happy to do so.
We are here for you. No one really understands and drs think they tell you everything but then when you get your medical records or come on here you learn a bit more.
Its very hard not to worry.
Thank you for all the kind words. I agree I feel like I’m still finding out new info online beside what the provider was able to give me.
I live in Southern California so would not be able to meet up with you, but thank you for the offer!
What a scary place to be. I had an AVM removed 5 years ago and I understand how this is and not knowing is the hardest part. I came to the decision to have the surgery because I knew a stroke could disable me. and I had already had one stroke. I’m doing well now. I am certainly not the same as I was before the operation. For example I was in college classes and before the operation my work would be done much more quickly than after the operation.Thinking just took longer… hope you get all the support and help you need to make the right decision for yourself.
Welcome to the family & sorry to hear about your recent diagnosis.
As silly as this may sound I think it is a good thing to know you have an AVM prior to any bleed as someone posted… I had a bleed 1 month after finding out but cause I knew I was very aware & acted quickly seeking medical attention, which possibly saved my life.
Knowing this will give you the power to control your actions daily until you get a solution whether surgery or radiotherapy etc… it’s not ideal & stress doesn’t help but there is light at the end of the tunnel so just try your best to live life… consider the fact your born with this & throughout your life to date had no idea it even existed.
I’m not going to pretend it’s easy to live life after such a diagnosis but again stressing over it doesn’t help at all as I learnt… also note some can’t have it removed and live their life with an active AVM everyday.
Please stay strong & keep us posted on your journey… God bless!
Thank you for the uplifting words! I agree, I’ve some time to think on it, and I do realize that that it’s better to be aware of the risks and symptoms, in case it ruptures. I have the angiogram scheduled for this up coming month, so will soon be able to have more clarity on the next steps.
Glad you’re doing better!
I have an angiogram scheduled for this upcoming month which will determine what the next steps will be. I think I’ve kind of decided to move forward with the surgery as well, if that’s an option. The stress of living with it knowing it can rupture I think would be too much. However, I am preparing and considering the fact that they may come back and say the surgery is too risky. So, we shall see what they say.
I am scared of side effects like what you mentioned, but I’m glad to see that you are moving forward still, which gives me hope that’s it’s possible to have a full life still.
Good to hear! It definitely works to your advantage knowing what’s in there & the risks… God bless!
I hear what you’re saying.
I had an angiogram a month before my surgery The thing that helped me make the decision for the surgery was that if I had another stroke I might be disabled for life. That’s what gave me the strength to go for the operation. I was fortunate in that my AVM was close to the surface and could be operated on somewhat easily. The neurosurgeon said after the operation that it was a textbook case. Recovery continues and it’s sometimes helpful for me to remember Jill Bolte Taylor’s book. She had an AVM removed that was in a deep part of her brain. She said it took her seven years to recover. Glad to offer the dialog. This site is a “rare bird,” as it helped me to make a good decision when I was thinking about AVM surgery.
I’m definitely going to look up Jill Boltes book.
I had the angiogram done this past Monday. I had a hematoma form after the procedure so it’s been still painful. But from what the provider said, the AVM is 4 cm and had two major veins Intertwined. I won’t hear back on their recommendations for survey until about 4 weeks. Glad yours textbook case and not super complicated!