It seems like every step so far in this journey through fixing (or leaving alone) my AVM has been extremely stressful for me. I know they say doctors know best, but with the complications percentage of 4-8% due to embolizations, it makes me think twice about having the procedure done. I’m pretty young so now would be the best time to treat the AVM. I’ve had no symptoms other than visual deficits that I don’t notice. I still have the option of doing nothing and taking the risk of a 1-2% bleed every year.
I feel very confident in my doctor and like how personable he is. Has anyone else gone through this, with actually having a choice? I know most people have a bleed and the risk is much higher for them if they don’t have the procedure done. As a side note, I think this network is an excellent thing as I have noone to really talk with about this aside from my doctors who have never had one themselves. I’ve also attached a scan from my initial MRI showing the location of the AVM.
469-brain.jpg (109 KB)
Hi John,
As you’re thinking about the risk of a bleed vs. the risks of surgery, you might want to search for a discussion called “Life Expectancy” on this site. People were discussing the annual risk of a bleed, and many of us are unclear on whether the 1-2% per year adds up as time goes by, or not. I’m not even certain whether the doctors agree on this. One member of this network found a medical website that says lifetime risk DOES build up: http://brainavm.oci.utoronto.ca/malformations/content/B_AVM.htm
The more embolizations your surgeon has done, the more confidence you can have in him, I think. You can’t exactly predict your outcome on the basis of other patients’ outcomes, but you do want to make sure your surgeon has a record of doing your particular procedure successfully and often.
Keep us posted on how your decision process is going.
Jorie
Hi John, my name is Beth and I can relate to your nervousness. I had my first embo on March 1, 2000. I was scared to death. Each one got a little bit easier and I can only say if I was young when I had the option to have or have not (I was 42) I would have gone for it full force 100%. I am treated in NYC by Dr Berenstein and have complete trust in him. That is so important. To be able to trust your Dr that he is going to do what is the very best for YOU. We cant be cured, we can only be maintained as this is what our body does. I have another growing now but Im not ready to have anything done yet. I will wait but Ive been through the hard part. Getting it under control. If it was me, and I have 10 years of hind-sight, Id go for it. Whatever your choice is, I hope you are at peace with it. I had brain surgery in June of 09 and you wanna talk about scared??? For one who has had both, I would take 100 embo’s over brain surgery any day!! You take care and please keep me posted as to your decision. Beth J ■■■■■■■■■■■■■■■
Thanks for the information and words of encouragement. I think it all needs time to soak in, and thankfully my embolization isn’t until March 4th.
Hi John, I completely understand what your are going through I had my first Embolization in Feb 2009, and it went well, the next one was meant to be in May 2009, but I decided to postpone this untill Aug 2009, as I was going away in June 09. So when i returned back from my holiday i became higly stressed out as my granmother passed away, and my brother was due to get married in the space of 3 weeks. I suffered a major braing Haemorhage and required a life saving operation and a Craniotomy was performed. I have made a full recovery since, and since the big bleed in July 09, I have had 2 further embolizations, and will be going for my fourth one next week. Its a scary procedure, but the doctors do know best, and i saw my last scan my avm use to be the size of a tennis ball and is now smaller than a golf ball. so they are optimistic i can be fully embolised by the middle of this year and be AVM free.
What am trying to say is, I made a bad mistake of postpoing my embolization, every case is different, but your doctors will only do what they think is best, and am lucky i am young, only 26, so recovery from these procedures is quicker. I hope I didnt scare you, but stay positive and everything will be okay.
Thanks for your input Dipen, and I’m only 25 now, so we both can relate to similar situations. It is hard not to stress about this, but I tend to make sure I don’t stress about other things in life that can’t be controlled. After hearing on here from you guys and having faith in my doctor, I think embolization and following the doctor’s suggestions would be wise even with the risks. From the cases I’ve read the complications from the embolizations seem to occur more frequently in older people so there is comfort in knowing that my body is young enough to recover or avoid whatever complications that might occur.
I had a choice and felt just as you do as I have not had any severe problems. I found out about my AVM after getting tingling and numbing in my arm. I was initally told I needed neck surgery (by 3 spine surgeons) and then I decided to consult with a neuro dr. He did the MRI and found it. I was told mine cannot embolized or removed due to the location (too risky). I would be left paralysed so I opted for gamma knife. Even with that there are many choices. Gamma knife, stereotactic surgery using Novalis,. Proton Beam and then which dr. has enough experience. They say trust your dr but that is difficult when you meet him once or twice and speak with him on the phone if you are lucky, quick consult and off you go. I trust only God and prayed for guidance as to the right dr. It is all very scary & confusing. I was not hasty and consulted with many drs. (like 12) and 10 recommended gamma knife/stereotactic surgery and (2) wouldn’t give an opinion. I will trust God and wait for the AVM to Be gone and I plan to still be here as spunky as ever 
Keep positive …Dawn
Hi John,
my name is Alexandra, and I completely understand you. I got my embolization last July, and before that I was also scared to death. But differently from you I had no other choice, it had to be done as soon as I could appear on the waiting list, since my AVM was in such a bad place, near the brain stem, in the cerebellum, the size of a golf ball. Previously I had had an intense nerve pain on the right side of my face that was so painful that I wanted to get rid of it as soon as possible and the surgery has helped me to achieve it 100 % :))
So in my case I didn’t have to choose to do it or not do it, and I am grateful that with the help of my doctors I could get rid of my illness.
I think you should not worry as I have read that embolization is not so dangerous, I’ll give you the link which says:
“The risk of embolization is low. Possible complications include stroke like symptoms such as weakness in one arm or leg, numbness, tingling, speech disturbances and visual problems.
Serious complications such as permanent stroke or death are rare.”
http://brainavm.oci.utoronto.ca/malformations/embo_treat_aneurysm_i…
So it is not dangerous, but afterwords my brain had to get used to the new situation inside, and it took some time. I had a constant headache, but it could be treated well with painkillers. I also had nausea after the operation and was sick for a week so I lost a bit of weight, but gradually I got better and better. What stayed with me longest, for 5 months was getting sick two days before a cold front came to my country (eg. once a week), but now I am here, alive in a perfect health, without sickness and pain and I am grateful that I have no problem any more !!!
Take care and don’t worry!! Alex
Hi John,
Totally understandable that you feel like this is a stressful journey and that you are unsure of what to do. It’s a tough thing to deal with and you are faced with decisions that you were never expecting to make, and now have to do so with only a limited understanding of what this really is and how the treatment is done, how risky it is, etc. As much research as we all do, it’s still scary. Having this opportunity to talk with other people who have been in your shoes…such a relief, right?
As for me, I have embo’s every 4 weeks. Been doing it for almost 2 years now. So I’m a pro! And to some degree I’ve become completely desensitized to it, so to speak. It’s now just routine. BUT, I remember how I felt before I was doing them all the time. When I was little or in my teens…even my 20’s! I was scared and nervous, as any normal person would be. I was always super freaked out the night before and would work myself into a total mess! The key is to have someone there to support you through this. Chances are it will be no big deal…or well less than you are expecting and stressing over. You will prob be done with it and say “well that wasn’t fun but it wasn’t as bad as I imagined.” And what a relief that will be to have it behind you.
Good luck with your decision Having done what I have, I would say that you should go for it. That taking the small risk now, will be worth the peace of mind you have for many many years to come! But ultimately it’s still up to you, and I know your questions here on the board are part of your desire to gain the right info, perspective, and to make the best decision for you.
Shalon
Hi John,
It’s definitely a surreal thing to be diagnosed with an AVM, having lived a “normal life” with it day to day and not knowing it was there. It can be overwhelming at times, which is understandable- I remember finding out I had an AVM after having a seizure at work- and it was like getting hit with a bag of bricks at 22. Since March I’ve had 5 Embo’s and 2 sessions of Proton Beam Therapy. Although my doctor gave me 2 options- treatment or do nothing, I couldn’t sway myself towards not doing anything since it was already creating problems (i.e seizure for someone who isn’t epileptic). I think the worst part of an embolization is being immobilized (and hungry from not eating haha) in recovery. I remember being somewhat loopy for a few days after, but nothing too intense- I couldn’t drive eitherway because of the seizure so that wasn’t an issue. Since my last embolization in September- I’ve gone back to living my normal life, I play indoor soccer, go to the gym, I’ve flown multiple times- once in an unpressurized plane and gone on roller coasters and I still have a monster of an AVM that I’m patiently waiting for radiation to take care of. Everything is at your own pace. Between the never ending support from family, the great team of Interventional NeuroRadiolgists at Mass General in Boston, and this group with a laundry list of information then I doubt I would be able to have gotten this far with the attitude I still have about it. You’ll definitely have your days, but just know you have options.
John,
Oh my goodness I know how you feel. I am 28 and trying to make the same decision right now about having one done in March. Good luck!
Marianne
Hey John,
I found out about my AVM in November 09 and had an angiogram done 2 months later. My doctors gave me the same options that are presented to you. I guess I am stubborn, but because I am asymptomatic…I am electing to no do anything about it. I’m just gonna wait and see what happens. My dr’s said that my avm is low risk…but can bleed and the only way to rid of it is to do the embolization and then the surgery. I did a lot of research and as we all know there is not a lot of information about cerebral avm’s and what is the best treatment for them especially for those who have not bled. I discovered the ARUBA study (it’s still underway) and it’s a study that focuses on people who have not had an avm bleed and they are trying to determine what truly is the best option…surgery or to wait. There is new information and new technology coming out every year. In the past 10 years they had made huge leaps and bounds in regards to treatment…so many options… so many opinions but no standard of care.
It’s totally a personal decision but when you have the time go look up the ARUBA STUDY online…read through it all and hopefully it can help you make your decision. I feel you though…seriously tons of stress…and indeed it is a journey. Good luck and my prayers are with you.
Hi John-
I had my first and only embo in Dec of 09. When my AVM was first discovered the plan was to have 2-4 embo and then a crainiotomy. I was lucky and the 1 embo shrank it down enough to skip the other 3. Any treatment we have for our AVMs is a choice. I was nervous and scared, but felt that walking around with a time bomb in my head was more risky than the procedure itself. I say do it! As long as you are comfortable and confident with your surgeons! Don’t wait for something worse to happen. I was scared too, but the thought of not doing anything was even scarier.
John: I had three embos lat year but always remember are cases are all different; trust in your doctor…I like mine and also as a nurse and knowing too much it was a difficult decision. mine cannot ever be “fixed” and I am facing another decisio myself to have another one… They arent that bad and you are so young so your recovery is good. you usually ae in the ICU for a day…mine are done at Cornell in NYC and my last one in June I left ehe hospital from the recovery room. You just have to take it easy for like two weeks. This is a wonderful site to get information because my friend, we all ‘get it’ here…I tell my doctor all the time as much as he treats them he doesn’t have a clue ot how we truly feel; I get horrific headaches as well as my heart pounding in my ears all the time…keeps me awake. If there anything else I can do to help, let me know. Also how are you feeling and are you on any meds. Sending positive energy as well as prayers to ya! We are all here for you!Peace, Mare
Thank you all for all the thoughts and prayers. I’m still torn with the fact that I have no symptoms at all and I could live out my life with no problems whatsoever or at least 10 more years or more without any symptoms. But if I have this procedure done, I could be cutting the rest of my life short with whatever complications may arise out of the embolization. The biggest part of me tells me that I’m young and I can recover from anything and that my best chance of recovering from this is doing it while I’m young. My next few weeks is going to be spent in prayer, research and celebrating life as I know it. That is for certain, I think all of us survivors know that life cannot be taken for granted. You all are a great source of inspiration to me.
Hi John, my avm was discovered when I was 49, after a stroke.
I had embolization and Gamma knife.
The embolization did not cause me problems, but the doctor spilled glue in my brain arteries, which
gave me another stoke.
You are doing the right thing by researching, you have to research and ask questions.
Remember, doctors are people too, they are not gods.
Find the best doc you can, pray, and then do whatever you feel is right for you.
I chose GK over craniotomy. I had symptoms all of my life, things that showed up and went away fast,
so when I had the stroke and was diagnosed at 49, I wasn’t shocked. The stroke shocked me, but after I got home and did my research, the avm diagnoses did not shock me. I’ll name some of the things that happened through the years
- fainted at 17
- arm didn’t work for a few seconds at 18
- big toe numb. off and on
- arm could not wash my body in a circle around 40
went away too - thigh skin would feel hot sometimes
That’s all that I remember right now, the things that happened were minor,
until the bleed. I’m feeling good these days, with little problems, I’m glad to be here
I hope this helps you, I think as you get older, the veins get older too.
Whatever you decide don’t do any heavy lifting while you have the avm.
Peace and Blessings,
Ameenah