Hello. My name is Gabe Alvarado, and I've just been diagnosed with an AVM. While vacationing in Colombia last year I had a bout with food poisoning, and my body reacted in a violent seizure. I thought it was a stroke caused by the food poison, but I understand now it was a result of my AVM. I know others on this site have had the same (or maybe worse) incidents, and I'm sure many of you understand the fear I'm experiencing on how to treat it. I just do not know if I should proceed with invasive treatments vs. conservative medical treatment? I'm 39 years old, so (hopefully) young enough to heal, but can anyone please offer any past insights into this subject? I thank you very much in advance. Sincerely,
Welcome Gabe, completely understandable the decision you need to make regarding your treatment. This is very scary stuff. Though my AVM was asymptomatic my decision to have a craniotomy and the AVM resected was a bit easier when my surgeon told me that due to my relative youth (I was 33 years old) and good health and physical fitness, the short term risks of surgery were far less than the long term risks of doing nothing. This was in 1993. As skillful as the surgeons were then, the technology now is much more advanced and the surgeons are even more skilled than they were 21 years ago. I read everything I could find on the AVM, surgeries, risks, everything. Ultimately I decided to go under the knife. Was the best decision for me. So as you will discover there are lots of us out here who will gladly share our thoughts, answer your questions, and hopefully assist you through this journey. And if you just want to reach out your hand for us to hold, we'll do that too. You're going to be just fine.
Welcome to the forum. This is a great place to learn all about AMVs. It sounds like you have already done some reading and are at least familiar with the different treatments. You might find it helpful to read some member stories and discussions to get more in depth idea of how the different treatments work and what to expect recovery wise. Of course every AVM is different, and being a healthy 39 year old will certainly help!
Making the decision on what path to take is a difficult one. All you can do is learn as much as you can. Get a second opinion from a doctor that is familiar with AVMs. You may find that the more you learn, the more obvious the path becomes. Good luck to you!
Welcome to the group. You have posed some great questions. Unfortunately, the answer is different for each individual as no AVM is alike. You need to meet with a neurosurgeon that specializes in AVMs to get the AVM fully investigated and get his/her recommendation. Don't be afraid to ask for a 2nd and 3rd opinion if you're not comfortable with the 1st or 2nd opinion. There are lots of things to consider when deciding a course of treatment. Is the AVM intact, or have you had a bleed? Where is it located? Is it in eloquent brain? What size? Has it been causing symptoms (like your seizure)? Your course of treatment will be personalized to you based on these and other questions.
My husband is 46 and is currently recovering from his craniotomy for the removal of his AVM. He had the surgery on Wednesday and we've been out of the hospital since Saturday. The doctor said he's cured of the AVM and very likely even the migraines. I don't know if the seizures will go away, but all we can do is wait and see. We saw three different neurosurgeons. First said to leave it alone, but the second and third both said to remove it. Surgery was the right decision for us, but it's not for everyone. We couldn't deal with the ticking time bomb in his head, given the choice. The odds were just better with surgery than leaving it alone, but I think we also picked the most capable surgeon for the job. We wouldn't have chosen surgery with just anyone doing it. Good luck to you and keep us updated on your progress.
I was 38 when I was diagnosed with my AVM. It was also located on the right front next to the motor track. I had numbness in my left hand and continuous headaches which helped me get diagnosed before it ruptured. I chose for them to do a craniotomy and resection. Prior to the surgery they did an embolization to cut off the blood flow to try to reduce the size of the AVM which was 3.5 centimeters. Just so you know there is hope and positive outcomes. I was out of work for almost a year and had to learn how to walk again, but I am now it the best shape of my life at age 46. If you ever have any more questions or just need someone who’s been through this to talk to you are welcome to call. 909.821.3287. I’m in Southern California so PST. Take care and God bless.
Hi Gabe, you should get a few medical opinions. My son was 11 years old when his AVM burst. He had a craniot
Was diagnosed FEB 2013, it was found after a grand mal seizure. I did research online through this website and of course google. I am sure you probably know all about it. I was able to get MRI, Cereberal angiogram and a functional MRI since it was located by my motor skills. I was able to request my films on a CD, once I had it I went ahead and reached out to 3 different neurosurgeons for opinions. The first said surgery was not possible and to go with GAMMA knife. The second opinion was said that it was possible for a resection through surgery. These first 2 opinions were local, once I heard the second opinion I knew (after research) that I wanted to send my films to Dr. Spetzler. Dr. Spetzler is very familiar with AVM’s, so I fed ex the CD and they said he would get back with me after 48 hours. One of his doctors called and said Dr. Spetzler was confident on being able to resect it. I had pretty much made up my mind that if he said resection that I would go with the surgery. I scheduled it the next day, I had my Crainiotomy just over a year ago. I just had my year follow up and everything looks good…
Just like everyone has said, get multiple opinions then way them out and see what is best for you.
welcome to the group! Just like Leeka’s husband, when I was diagnosed with my avm I saw a whole team of neurosurgeons at the hospital after my seizure and they recommended I leave it alone. I went and got a second opinion and was assured it could be removed with some loss of vision. I went with the second opinion and it was successfully removed, the only impairment was partial vision loss. I’d do some research on what abilities you could lose as a result of surgery and confirm this with a surgeon and weigh that risk with the risk of other or no treatments.
Like everybody else on here says, the first thing you do is research, research, research, then go with what is best for YOU. Most neurosurgeons think that their decision is best and would recommend their route, but ask 2 or 3 different ones and then go with what you think is best, because after all, it is you that has to live with it. Mine ruptured in 2004 in a place they can’t get too, went with radiotherapy to shrink and kill it within a year. 9 years later nothing has changed except blood is now starting to flow back through the spot that ruptured. Oh well, I have a shunt that flows into my heart so I guess if it starts to bleed again it will just flow back into my heart and keep circulating. They have mentioned the embolization, but said if we make one little move in any other direction by a smidgen I could wind up paralyzed for life. I figure I have been having office headaches for 10 years now, but am able to walk around, I could not imagine having them and unable to move, especially since I really like to move around a lot. The best thing is to keep the faith and a sense of humor. Laughing, even though sometimes it hurts to do, it still makes me feel better. Yours seems like it is a place where they could get to it pretty easy, and any surgery is scary but I would recommend that you do what you want or feel like what is best for you. You are still young and will heal a little faster and easier than us old foggiest, but it is still up to you. Good luck on your decision and with whichever route you decide to take. And if you opt for surgery and they put you to sleep, make sure you tell the surgeon a funny joke before hand. It will take his mind off of the task at hand for a minute and he will feel more comfortable doing what he has to do.
I'd like to say thanks to each and every one of you that has taken the time to read or respond to my discussion. I appreciate the advices, and the feeling of comfort it has brought me is immeasurable. I wholeheartedly cannot wait to pay it forward to others that may come. I know I have a long road ahead of me, but I feel much stronger about the dilemma. Thank you.
Hi again Gabriel, I wish sites like this were around ('92-'93) when I was pondering what the hell to do when faced with very real life changing circumstances. And as you can see in such a short period of time tonight there are many of us AVM brethren who are here to help. So get busy with some research. Learn all you can. Get more than one opinion-ideally more than two-discuss your options with those closest to you, make your decision on how to proceed with treatment, and dive head first (no pun intended) into it. Then focus on recovery. Have no illusions; recovery is a long road. But you'll get through it. There's a long and healthy post AVM life ahead of you. And when you're up and around you'll be helping others just as we are. You're going to be just fine.
Hi Gabriel. This link might be of some use to you…http://www.avmsurvivors.org/group/questionsformydoctor/forum/topics/good-resource-list-of-questions-for-your-neurosurgeon BTW…looks like there will be an event in your area…http://www.avmsurvivors.org/events/houston-avm-barbeque-family-friends
Forgot to mention that the biggest problem with an AVM is that there is no risk free way to deal with it and that includes if you decide to leave it alone. Whatever you choose…we will be here for you!
I had a brain hemorrhage in Dec 2103 which then led to a stroke. They found a Dural Fistula type 3 ( a type of AVM ) As mine had already caused a bleed, after an angiogram ( scan of the veins in the brain ) they decided to do an embolisation ( injecting glue ) to kill off the Fistula - they may decide this is an option with your AVM. This procedure was a bit tricky for me as I had had the brain bleed and the brain was still a bit irritated. The last angiogram I had showed ''satisfactory'' results from the glueing - I have to go for a consultation next month to find out what ''satisfactory'' means. I hope they killed it off - we'll see. Ask any questions you have Gabe, it's a weird experience to go through - but there are so many many great success stories where AVM's have been treated fairly easily. Sending positive vibes
Welcome Gabe. Every AVM is unique Gabe, as is every recovery. Hopefully, you are not too confused with all of our responses to you! Find a Neurosurgeon who is very familiar with AVM's and has treated MANY AVM's!; then hopefully, you will feel very comfortable with him/her and their team as that is very important for you. That's it from me! :) All the very best to you Gabe!
Just re-read my response and it sounded scarier than it was. Stay positive
Hi Gabe and welcome to the site. I agree with what others here have said. The issue of whether to treat an AVM or not is very individual and noone can make the final decision but you. I have a Cerebellar AVM which is unruptured. Truth be told it hasn't given me much problem so far and I haven't suffered seizures or the like. I am always aware of its presence and have noticed slight issues with memory, balance, bruit etc which others on this site report. But for the moment I have elected not to have treatment. I am 41 and have a young family. I have a great job and a lovely life, and I'm happy. I know this could change in an instant but I feel I don't want to tempt fate and potentially spoil what I have. I'm here for the moment and will have to take my chances. Very best wishes for making your own decision and good luck!
Hi Gabe, I was glad to read your story this morning.
My wife Janet, who is 62 was diagnosed with an AVM near her Optical Nerve in her brain last December. She had suffered a Grand Mal Seizure while driving at 70 miles per hours. We survived that and I got us pulled to the side of the road. That was our first victory!!!
We've been to see 4 Surgeons. Two Crainiotomists said they don't want to touch it, it's too big and in a dangerous spot. The Radio Surgeon kind of stepped back also due to it's size and location. Our fourth Surgeon said he'd be happy to try and embolize as much of it as possible. He was so honest, he just looked at us and said. Don't touch it, your 62 and it may never bleed or cause a stroke.....But, he also said that if we trusted in him, he'd give it a shot. Dr. Agola is his name. He looked right into our eyes and said that there is a 5 to 10% chance that he'll cause a loss of vision, or memory, or some motor skills.
My wife Janet thought about it and smiled and decided that means there is a 90% or better chance of reducing the AVM and thus reducing future risks. And she is taking the bet that she'll be better after embolization.
We go in to the hospital for surgery on June 2nd.
I'd like to point out that I keep using the word "we". This effects both of us. And we're a team. I hope you have somebody to share this with. A wife, a parent, a sibling, a best friend....just somebody to hold you and put up with you. Somebody to keep you smiling and laughing and gettin' you out there and doing things. That's my job and I cherrish being able to do this for Janet.
Good luck Gabe, please keep us all posted on your progress. And know that we're all sending good positive vibes your way. We all need all the positive power we can find!
Chuck Sowers, Kitty Hawk, NC
Welcome Gabe to a group that no one wants to join. I had my AVM bleed when I was 43, twenty one years ago. I also had seizures as a result and was on anti seizure medication for years. I did not have surgery, and have had MRI’s once a year for 21 years. My twin also had a bleed and elected to have surgery. She did well with her surgery at the time. I have no residual problems and remain hopeful that this will continue. I lost my twin to brain cancer two years ago. Unrelated to the AVM. All of our stories are different. I wish you luck on your journey. I hope it is encouraging for you to know that we CAN live long healthy lives after an AVM diagnosis. God bless you.
I have just one piece of advice to add to all the excellent posts. If you get clear consistent advice from 2 or 3 opinions then it is an easy decision, if you get conflicting advice, which as you can see is not uncommon, then you need someone impartial and expert to help you. The best thing we did in my daughter's case when faced with wildly conflicting advice was to find a very experienced neurosurgeon on the point of retirement who was never going to operate himself. He could review the various pieces of advice on an impartial basis and help us conclude.
If you end up choosing surgery then the key question for the neurosurgeon is how many AVMs have they operated on - the more the better.