Fear

I am scheduled to have my third embolization on July 14. The first two went well, but my doctors tell me that this one will carry more risks (10-15% risk of stroke, damage to my vision) because of the location and size of the veins. They gave me time to think about it, if I want to go through with it, but how could I say no? I don't want to have my AVM forever, I can't go through life like this. People keep asking me now, are you sure you want to do this? No, I'm not sure I want to do this, it scares me so much, but I HAVE to do this. I just can't fathom not going through with it. I started treatment months ago and now I'm almost done, this is supposed to be the last embolization, how could I stop now?

It just scares me so much. Every time I start to think about it, I start crying, because it isn't fair that I have an AVM, it isn't fair that any of us should have to deal with these things. 10-15% isn't that high, but it's still scary. I'm only 20, I have never had to make any choices that were anywhere near this serious or scary. I feel like I'm still a baby and I want my mom to do all these things for me but it just doesn't work that way anymore lol.

I don't know, I guess I just needed to vent to people who understand. I try to talk to my friends and the only things they have to say to me are like, "I'm sure it will be fine", I know they mean well but it doesn't help. I can hope it will be fine, but the numbers tell me there's a chance it won't be. I just can't ignore the numbers and pretend like everything will always be okay no matter what. I wish I had that kind of optimism but I don't, lol. I just want to hear some encouragement from people who have been where I am and understand.

I know exactly how you are feeling. I have had two embolisations for my AVM where the feeding vessels come off the opthalmic artery so there was always a risk of loosing my vision however after debating the pros and cons I went ahead with them as I just cant bear living with this mass on my face cos its causing my eyelid to swell and mis shapes my eye. My neuroradiologist has said he will not perform any more embolisations as I had a bleed during the last one. I am now waiting for an opthalmic surgeon to try and remove the AVM by opening up my eyelid. Im very scared of what affects this will have and whether he will be able to remove or successfully or not.

I hope that it all goes well for you and you are happy with whatever decision you come to. I understand your frustration, its not fair that we have to have these damned things which for me has taken over my life, its all i bloody think and stress about.

best of luck with everything

Chari (wife) had like 4 embos. An aneurysm showed up after embo #3. Almost same scenario as you: Why would you go through embos for the AVM and then NOT treat the aneurysm that showed up? She did it and was fine. Some minor deficits–she’ll never be able to play tennis or jog. BFD! She’s alive and has been my soul mate for 33 yrs as of 6/10.

There is risk with everything. Sure, you could have a stroke, or die, or or or. But you could also do fine, and the odds according to your DR say you will be fine.

For us, we were at peace with whatever happened going into surgery. We knew the risks. While we were ok with the negatives, we felt it was the right thing to do. Requires a lot of soul searching.

Whatever YOU decide to do is the right answer for YOU. If you decide to do it, I would try to have my affairs in order, and have a method to be in a relaxed and peaceful state when you enter surgery. Then whatever happens will be fine.
Best wishes to you,
Ron, KS

Hi Kayla. I would be more worried about you if you weren’t a little scared. Just concentrate on how wonderful it will be to write the word OBLITERATED on your profile. I will be praying for you on the 14th!

Hi Kayla.

Never be afraid to cry, and show emotion - 20, 30, 40 or 50yo (like someone i know!) - 1000s of survivors know how you feel and react.

Percentages and statistics give a general picture, but each AVM/aneurysm/procedure is unique. I say this as a lucky survivor - my neurosurgeon advised pre-op that I had a 15% chance of a deficit. Two ops later, my AVM was obliterated and an aneurysm clipped - still on anti-seizure meds, but being weaned off them by mid-July this year. Tony - 1, deficits - 0

Did i get scared - yes. Did i think i might die - yes. Did the wonderful people on this site give me strength and support before and after - yes.

Easier said than done, but try to keep a positive outlook Kayla - and always make the choices that suit you.

Look forward to hearing your success story. Tone

if the doctors think they can get ride of it, Its good to get it over with at a young age. The older you get the harder it is to heal. And you really can't go thru life thinking "what if". you have your chance, may not come again, if i could i'd take it.

Hey Kayla, I was told very much similar probabilities, if not more of losing eye sight/stroke etc etc with my treatment.. You'll find that these professionals will always state worst case scenario's.. The benefits out weigh the risks in my opinion.. I know its a risk i was take if i were you, and did take myself with great results :)

All the best and take care Kayla :)

Hey,

I'm Sven from Belgium red ur post and wanted to help, well try to at least. I have an avm also and been embolized more then 10 times, last six months I've been embolized 3 times. The last embo was also one with a great risk but I asked to churgian to take a risk myself. The reason why I asked is maybe the solution to your problem. Before I strart to explain I want to say that its your life and you should decide yourself what to do with ur avm. I wanted him to take that risk because I know that I would rather life in a wheelchair ( in my case) knowing I've tried then to not embolize furtherand wondering my whole life how life would be if i took that risk and the embo would succeed. I'm a fighter and always pushing limits but as I said it's your life and your decision. Every embolisation is riskfull and at first when I asked my surgian didn't want to take that as he called it so called overrisk but after many talks he agreed. What i'm trying to say is that as your surgian wants to embolize it will be possible and every embolisation has some risk but embolisations are fairly save and stabile procedures. You will be ok and after this you will be happy you've done it, you took that step all alone and got better with it. I wish you all the best.

Hi Kayla,

I understand your fear of vision loss. When I had my first craniotomy 40 years ago I had little choice in the matter. I was paralyzed on my left side and unresponsive when they wheeled me in to the OR. The techniques they used back then were crude and patients with AVM's only had a 40% chance of survival at all. The first neuro saved my life, but due to the location and size of the AVM (right rear occipital lobe), I lost all vision in my left eye and the inner half of the right (which is nearly 20/20 now). I was verry upset with the man, who led me to believe my vision would return. Since then I've gotten my college degree, Been a Red Cross disaster volunteer, as well as a phone crisis counselor and a police 9-1-1 dispatcher. To read the details of my experience with AVM check out my website at:

Fear Not, My Son

And know I want the best for you.

Your Friend,

Rob Forsythe

Great advice Tony, I couldn’t have said it any better. Stay positive Kayla - you can get through this. 15% is low risk but they have to let you know that information so you can make that informed choice. I have that all ahead of me. I’ll be thinking of you. Take care. Dionne



Tony L Sydney said:

Hi Kayla.

Never be afraid to cry, and show emotion - 20, 30, 40 or 50yo (like someone i know!) - 1000s of survivors know how you feel and react.

Percentages and statistics give a general picture, but each AVM/aneurysm/procedure is unique. I say this as a lucky survivor - my neurosurgeon advised pre-op that I had a 15% chance of a deficit. Two ops later, my AVM was obliterated and an aneurysm clipped - still on anti-seizure meds, but being weaned off them by mid-July this year. Tony - 1, deficits - 0

Did i get scared - yes. Did i think i might die - yes. Did the wonderful people on this site give me strength and support before and after - yes.

Easier said than done, but try to keep a positive outlook Kayla - and always make the choices that suit you.

Look forward to hearing your success story. Tone

Have you thought about a second opinion? At Jefferson Hospital for Neurosciences (JHN) in Philadelphia, there is a neurosurgeon, Dr. Jabour, who is doing procedures that deliver cancer meds directly to the vessels in the eye. I believe the same method can embolize vessels near the eye. Dr. Rosenwasser is treating my AVM, but they both treat AVMs and aneurysms and have excellent reputations. I don’t know where in MD you’re from, but Phila is not too far and may be worth the consult for ease of mind.

Hi Kayla, I just want to hug you! My daughter will be 19 tomorrow and her AVM was just diagnosed on May 13. It is 8cm and covers three parts of the left side of her brain. She is just starting this process and trying to deal with all the emotions that go along with it, sometimes scared like crazy and other times just trying to forget about it for a while. Remember that even though people don’t know exactly what to do for you or say to you, they love you and care more than they can probably express. I will be thinking about you, especially on the 14th. Please write to me if you want.