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AVM Survivors Network

Anyone out there that has NOT had a bleed or issues from their AVM?


#61

There are billions of people who have it in the world and never know and never have any issues you have children I think that is awesome and I think that it is more awesome that you found out before anything went wrong and again it may never I know people who have lost loved ones due to not knowing. You know the old saying if its not broken do not fix it so I would suggest leave it along..


#62

I was told that the probability of a bleed increases as you age. My AVM was discovered after a CT scan when I was 16 followed after a car accident. I don’t regret getting gamma knife, but my AVM was in the middle of my brain and the size of a golf ball. IMO that is a personal decision you should make after considering age, location of your AVM and probability of side
effects. I had some, but I am AVM free.


#63

Hi all,

Under the advice of two doctors, both said I could "wait". They don't see an urgency of having surgery right away. My AVM still has not bled, but the thought of knowing it's there bothers me daily. Literally! To quote my good Neurosurgeon "If I don't touch it, I don't hurt you". So, given that great advice (insert sarcasm), I'm waiting awhile. Hopefully, that's not a bad decision?!

Thanks everyone!


#64

I second with everything Jay^ said. I want to add that you should consult with at least a few AVM specialists that have great recommendations, to see what they say as well. It really is a personal decision and waiting depends on everything Jay said. Have you consulted with Barrow in AZ?


#65

Dionne -

No, I have not consulted with Barrow in AZ b/c I cannot get anyone to call me back to schedule an appt. I'm wondering how that doctor is different than any other knowledgeable neurosurgeon, except of course, b/c of his treatment rate?

Thanks,
Jamie


#66

Hello there Jamie--

We hate that you have to deal with this disease also, but you are handling it well, and always be positive no matter what you decide to do--it is a daily battle, but moving forward is the best thing!

Glad you have had no major symptoms yet, so that is good.

My cerebral AVM was found and then diagnosed correctly back in 2005--I have had no bleed as of yet. I have suffered from migraines since I was 3 years old, so almost 50 years. I have many painful symptoms on a daily basis, but I keep living life as best as I can.

My wife and I have decided not to seek treatment for the AVM at this time, and we are at peace with that...good or bad.

Hope that you continue to do well and look forward to talking to you more. Please take care--


#67

Hi Jamie,

I too am glad you’ve found this site. It was invaluable to me when I was diagnosed in 2006 when my doctor thought I light have had pneumonia. I had an MRI and an AVM was discovered in my left frontal lobe.
I had been having disruptions in speech, dizziness and headaches every day. I was treated with the glue and in 2009 when the headaches returned I had an ablation but was told I needed the Gamma Knife procedure. I decided not to do it, but still suffer from the headaches and have had (I think) two seizures in the last few years.
I may have the GK, but I’ve thankfully not had a bleed. It’s a personal decision, and I’m sure you’ll make the right decision when you need to do so. I wish you luck and blessings.
Vicki


#68

As of right now I have had 3 AVMs and as of now none have ruptured. I had brain surgery to remove the first two as well as gamma knife radiation on the first one. I came through both surgeries great with no major complications and was back to my normal routine within a month. I currently have another which as of now is untreated, but we will determine a course of action this May to see how the AVM has progressed. I have had the best surgeons and for me personally I absolutely needed the first two surgeries because of the size and amount of blood flow. No choice is the wrong choice, you have to listen to all of the information presented to you and then choose what is best for you and your life at this moment.

I wish you luck with everything! :slight_smile:


#69

Queenie125 -

Did you have cerebral AVM's?? WOW, so glad you came through those surgeries so well! That's wonderful news.

Thanks,
J


#70

Here is a story I read on CNN the other day. This person shares what it was like for her to not "obliterate" the AVM. May be of use to you! http://www.cnn.com/2014/03/13/health/hill-different-strokes/index.html?iref=allsearch


#71

Yup! All cerebral AVMs! I am one lucky girl!


#72

Jamie:On whether to treat or not,of course the best I can only say is ' its up to you. ', but I can say that I had an AVM in about the same location, Occipital lobe, right side. I had 8 embolizations to shrink it enough for surgery, and a craniotomy to remove the mass. During the replacement of my skull flap after the craniotomy (separate surgery) I had a stroke. The damage was homonymous hemianopsia(loss of peripheral vision), temporary paralysis, and mild aphasia (difficulty with speaking). Almost a decade later, The only lasting side effect is the vision loss. The speech problem cleared up with speech therapy. As the healing continued, the paralysis went away after about one month.

My experience has been totally livable. The best part.. that pesky hemorrhaging risk is gone.
(I hope this post kind of helped)


#73

you are very lucky you knew about it and you still have time to treat it before it can cause debilitating damage . well, mine ruptured last year around October. I told my self that I will never go back and will not regret anything but until now sometimes I find myself wondering the what ifs. because actually ive felt the headaches for months but never got the chance to go to a neuro and have it checked. now im thinking probably if I had known I would be living a somewhat different life than what I have today. I have left hemi paresis. I don't have a job as I cannot walk and move my left arm. when it bled I had to through a craniotomy to drain the blood and obliterate the avm


#74

Thanks, Raveon! Hoping you continue your fulfilling life with no issues :)


#75

Thanks, Vicki! Keep your head up.


#76

Wow, Queenie125,

That seems like a whole lot to deal with! Where are you located and who is your surgeon? He/she sounds amazing!


#77

Thanks, Nicholas! Great article!!


#78

Michael -

Yours has been the closest to mine I've seen on this post so far. so, 8 embs huh? That's alot! So the replacement of your skull flag wasn't even in with the original crainiotomy? Wow, I'm so sorry you went through that. Did the paralysis of the sight/speaking etc come from the stroke or the surgeries themselves? Sorry for all the questions, but my surgeon has cautioned me on these exact areas that could be effected as well. Just want to know all I can. Your post has been very helpful!!

Thanks
Jamie


#79

Thanks, Vanessa! It's a pretty tough decision.


#80

Hi Kenny, my name is Maxine I was diagnosed with a AVM in Feb 2016, after lots of apmnts I’ve decided to have surgery and embo first to glue it. Mine was found by accident by pulsitis tinnitus whooshing in my right ear, had MRI and they found my AVM front right lobe. I’ve been told that surgery is
My best option as it is a little too big for radiology, and embo doesn’t always work, it’s superficial (on the surface and non eloquent (not deep) so to make a decision to have surgery when I feel well and have no other symptoms is hard. I’m due embo and surgery in May 2017. And yes I’m very worried about tj surgery and embo. But your story is very encouraging and I’m glad it went well for you.