Hello everyone, my name is Alex. I have been reluctant to write anything on this support group because I felt like the moment I reach out for support and advice from everyone hear it will feel that much more real. I know I can’t just keep pretending this isn’t a big deal but the more time goes by I can’t help but think about it more often. I’m grateful to have found this page and know that God led me here. I have seen a neurosurgeon and had an angiogram done. He has been very kind and caring to my wife and myself. I believe he does lookout for my best interest. My AVM nidus is centered with anterior superior hemisphere of the left cerebellum. (Copied and pasted from medical chart). He recommends doing pre embolization with SRS treatment. It is 3.8 cm as well as high flow with multiple nidal aneurysms. The only symptoms I have are headaches every other day. It was found by the grace of God. (Guniea pig for a new machine). He said because of the location, he wouldn’t recommend surgery to remove it. He mentioned I probably wouldn’t even make it to the hospital if mine were to rupture. He said to take my time to make a decision but if it were him he wouldn’t just leave it and not do anything about it. Has anyone here had one in the same location and same treatment recommendations that had already gone through with it? I know it’s not the same for everyone and God is in control, but I don’t know…I just would like to hear, if any, other similar stories. I feel so indifferent right now. I don’t know why. I apologize for the lengthy post and lack of flow. Thank you all in advance.
Welcome Alex, I had no problem following the flow of your post, so no need to apologize. You know a lot more about your issue than I do. There are very very knowledgeable people here that are generous about helping so you’ve come to the right place.
I do know what you mean about not wanting to admit to yourself the reality/risk of your situation. I was in denial big-time. It’s probably natural.
It seems like you’ve got a lot of support and faith in Gd so you’ll be able to “confess” your fears when and how you see fit. Best wishes, Greg
Welcome Alex, and firstly thanks for doing what you do! First responders are so vital in so many areas and make a difference in so many lives. I don’t want to make a joke, but I guess they have confirmed the new MRI unit works! It is great it was discovered incidentally to assess for possible treatment prior to a bleed. I imagine the next one will be with dye, and great to hear neuro was so good. My AVM was found due to a bleed, and then treatment after the fact.
Processing these things is certainly challenging. Take Care, John
Welcome to AVM survivors. It’s great to have you join us, though none of us wanted to find this place!
I’m sure we will find some people here with an AVM in a similar place, though I don’t think you need camaraderie with someone with an AVM in exactly the same place: the worries that you have, the how-on-earth-do-I-decide-about-this question is very much the same for any of us with a brain AVM.
My main thoughts are exactly as your doctor has said: take your time to make a decision – your AVM is something you’ve likely had since you were in the womb – but it is something you need to rationalise with yourself and come round to what to do.
Since the doc has basically given you just one option, there are a couple of things that are worth considering: one, we can share our experiences of embolisation and of radiotherapy and hopefully make them a lot less scary than they are initially; two, I think you could seek out a second opinion. You might very well get exactly the same answer (which could help) or you might get another option to choose between (which might help, or might make the choosing more difficult!)
However we can help you navigate your way through some of this, we are here to try. You are not alone.
Very best wishes,
Thank you @GregF. I appreciate the encouragement. I’m glad to hear I’m not the only one who feels that way. I hope your doing well and will continue to do so.
Well thank you for saying that @JD12. I enjoy my job and find it rewarding. Yes I guess it does work lol. It was definitely a God thing. The odds of that happening that way are astronomical. Yes I’m thankful it was found before anything like that happened. I had an angiogram done through my femoral artery so he has full pictures and 3D animation of it. I just don’t really think I have much of a logical choice but to go with what he recommends. I’m sorry to hear that John. What kind of treatment did you have done? It sounds like you’re doing well now and I hope you continue to do so.
Thank you @DickD for the encouragement. It sounds like you have a lot of experience with this and have heard many stories so it’s encouraging to hear what you’re saying. I think you’re right. I should get a second opinion and am currently working on submitting a request for one through Barrow in Arizona. They make it pretty easy to send everything. I’ve never had to do this so I’m not sure if that’s how its normally done or they just have a good system in place for it. I just keep thinking that logically it seems to be the best option but maybe not. Thank you again for the encouragement. I would like to be in a place where I can return the favor to others on this site. I plan on doing that if God allows me too.
I have a C4 AVM/DAVF and underwent embolization four months ago. My AVM/DAVF was located in left cerebellar behind my left ear. The embolization was successful; however, I am still recovering. I have daily dizziness, tinnitus and headaches/pressures. A new symptom is auras - migraines. My neurologists prescribed meds that somewhat help.
What I didn’t know before the embolization is that I am unable to air travel due to pressure for one year. This was unexpected, but I am okay with this as I can not go upstairs or any elevation without feeling lightheaded.
Every situation is different and everyone presents with different symptoms or health history. I have small vessel disease which resulted in a left cerebellar stroke two years ago. They accidentally found the DAVF via angiogram to implant a stent (which unable to do now). At this point, my C4 was about to rupture. I am not looking for longevity, but quality of life. I’ll be 55 years old this year. As a result of the embolization - they did indeed save my life, but now the quality is gone as I have issues with swallowing and speaking as the Onyx product used is in the area of the brain that controls speech and swallowing. My heart is impacted as well with this new correct high/low pressure of bloodflow.
This is not easy and you need to do what’s right for you. I felt like you that I’m in God’s hands - since I discovered this prior to rupture, I think it’s his way of informing me to take care of the issue.
I hope this helps and best of luck. All the best,
This is a very good idea. Barrow are pretty much the top practice and their remote second opinion programme is very affordable.
It is great to give back as much as you get support here. This was exactly my plan 6½ years ago and somehow I’m still giving but honestly you get even more out of giving than receiving, I feel. I find it amazing how we can hug people with words from almost anywhere in the world. (If you’re more comfortable with a handshake, I’m sure we can do that with words, too!)
It’s really good to have you on board!
I also have an AVM (right cerebellum) that is inoperable. First, I would suggest that you get several more opinions. I’ve had 3 neurologist say leave it alone, and 1 neurosurgeon that suggested, “Let’s just take it out.” You have to consider the motives of the doctor, and don’t let anyone suggest that a bleed will for sure lead to your demise. They have no real idea. There are lots of individuals on here that can testify that a brain bleed isn’t a death sentence. (One of the things to make sure is to keep your blood pressure down, so that in the event you were to have a bleed, you have a better chance of it not being catastrophic.) And you might not know this, but the technology for dealing with AVM’s has grown considerably in the last 10 years. My neurologist mentioned that we don’t have any idea the great strides that will be developed in the next 5 years as the technology is advancing quickly.
I’m sure you’ve also heard to stay away from aspirin and NSAIDs since they have an effect on your body’s ability to form clots in the event of a bleed. Also, for headaches, I’ve found that fasting for 18 hours does wonders for them. So, that’s eating at dinnertime and then not eating again until next dinnertime a couple times a week. I know everyone is different, but I’ve realized my headaches start when I wake up because I’m not getting getting enough oxygen at night. I don’t have sleep apnea, but one of my nostril cavities is constricted, so I use a humidifier at night and it does wonders for my sleep and my headaches. In addition, sodium gives me headaches, as well. At any rate, don’t let any one doctor dictate how you feel about your condition. Get multiple opinions and do what you feel is right for you and have hope that one day this condition can be a lot easier to correct in the future. God bless.
Hey Alex. First off great job having the courage to reach out to the group. I think the way you laid out your situation as well as your request was perfect. Don’t sweat the small stuff. Anyway, I am an AVM survivor. My situation was a little different. I was suffering from daily headaches as well with some of them, putting me out for almost an entire day. Went and got a CT scan and some sort of mass was found. Then an MRI was ordered and the truth of what we were looking at was brought to the surface. I had a 7.5 cm AVM in my left occipital lobe. Mine was also high flow and thus I was told that I wouldn’t make it to the hospital either if I had a rupture. The depth of it was right at the margin, where they were unsure about surgery for removal, or to attempt other treatments, as it could be too invasive. The collective decision between myself, my wife and my doctor was to go to the surgery route. I had another navigational MRI before surgery day. I had a full craniotomy, and the mass was able to be removed with a little to no disruption to the surrounding brain tissue. I was told that it was not only possible, but likely for me to suffer permanent damage to the vision processing functions of the brain. In essence, I may still be able to see a stoplight, but no longer be able to make the connection to the knowledge about what a red light means. Although that sounds shocking, I was very hopeful and grateful for the technology and skilled hands that got me through surgery successfully. These experts in the various treatment methods for things like we suffer from are better and better with every procedure that goes by. Have faith, hope or positive energy become a foundation for you and your wife. Also, when you need additional support reach out as many times as needed on this thread. This is a family full of people who understand and supports without judgment. Best of luck, my friend.
Guys, I’ve added those of you with cerebellar AVMs to the Cerebellum group. It is good to be able to support each other (you’ll get notifications of new topics in this category by being a member). I hope this helps you support each other.
As many have stated here, you’ve done a great thing by reaching out.
There is a very large amount of helpful and kind survivors here. They can offer a lot of advice as you can see already.
While your incidental finding in MRI wasn’t at all good, you may have never known about the AVM.
The alternative would have likely been catastrophic.
I also had a finding when rear ended in a car accident. Also, thanks for help in advancing technology by being in a trial.
The most valuable advice I see in this thread is that of a second opinion.
I wholeheartedly agree with this!
Barrow sounds like a great place from what I have seen in this forum.
Not to make light of your situation, but there’s an adage one of my neuros once said. “You could get 10 of us in a room and each would have their approach!”.
Seriously though, getting a second opinion would be a great way to see what another surgeon’s ideas are and maybe one that you feel more comfortable with. They may have something in mind that none have ever considered.
You may feel anxious about the wait of course, but making an informed decision about treatment is a balanced approach in my mind. Please take care of yourself and stay strong.
Keeping silent made my head spin and I’m thankful to have found this oasis.
Great job by the mods here on support and getting you in a group. Y’all are always on it!
See, my post was longer than yours.
As most here have admitted, facing the future and the decisions to be made is daunting. I cannot relate directly, as my cerebellar AVM ruptured as I lay in bed. I experienced a sudden, unusual headache and took a minute to decide to call ‘911’. I had no idea that I harbored an AVM. I was given a CT, then an angiogram, then straight to an 8 hour surgery. And, this was almost 30 years ago. It was unheard of for a person to survive at that time.
You have taken a proactive approach, for which you are commended. Time is of the essence, as you know. The opportunity for the AVM to rupture increases with time. A second opinion is a must. Together, with all the other information you have gathered, it will aid in the decision-making. (In some respects, I am glad I never had to make a decision.)
In addition to your knowledge, you have great relationships and family/friends support… sometimes underestimated. You will decide what is best for YOU.
I had no knowledge of the AVM and many people didn’t expect me to survive or recover. Well I did and in 1990 this was unusual.
You need lots of info and listen carefully to the experts. I don’t know exactly where my bleed was but filling my cerebellum with blood messed with my vision, coordination, ability to balance/ walk/ talk. I think it would be a massive risk to get no treatment. Could you handle a year of residential hospital treatment?
Have you met anybody who has an AVM but can no longer live independently? I’m fortunate that I can be independent but I know others who can’t.
Is where you live now viable for life with an AVM regardless of whether you have treatment or a bleed?
How do your family feel?
If you have surgery then you could well end up with a large scar on your head. It took me a long time to accept this and I wish I had got some help at the time.
Best wishes for your journey on this. We are here with our experience.
Tim in UK
Hi Alex, I hope you’re doing well physically and coping mentally/emotionally. I have no idea what will happen re Barrow. I live in Phoenix and have a fold out couch you can use for a bit if that would help you financially. Best wishes, Greg Let me know.
I had Gamma knife in 2016 and just this yer had another MRI and was “released” by the neuro team. No changes and no need for further follow up. However a couple weeks before this news I had my first seizure, possibly due to some scar tissue from bleed, gamma etc…so am now dealing with that. I just got back from Fargo ND today as I went for an EEG, seems I have another chapter. All in all, I am very fortunate and can’t complain, too much! Having Barrows give you a second is a good call!
Take Care, John
Hello Alex. I have an avm in my left hemisphere. It certainly affects my behavior more then anything, so it seems. But awhile back I decided no more anigograms or surgery. I’m just so sick and tired of the pain! Not to mention what surgeries can lead to, such as strokes and such. I’m not saying everyone with an Avm should ignore it, but that is the path I have chosen. When I pray I say God my Avm is in your hands. So far so good. I’m used to the things that come with my Avm, such as the dizziness. And as for Barrow in Arizona that’s way to far for me. I’m a limited person. Just my thoughts…welcome here.
Hi Alex. I’m sorry to find you here but this site was a godsend when I found it. My son had a similar AVM accidentally found. The doctor here said to remove it ASAP. He chose to go back to University and delay it until the end of the year. Neither he or my husband really wanted to admit how serious the consequences would be (head in the sand for the ex). So I insisted he get a second opinion in the USA (we’re in Australia). Marc Bain at the Cleveland clinic agreed, remove ASAP. And it was the best thing ever. Surgery here was coma for 4days in hospital 10 then possible discharge and recovery. In Cleveland I got to see him in the ICU and he when he could sit up after the angiogram he was chatting, fed himself dinner etc. I was so happy and relieved I could cry. He actually walked out in less than 48hours. And was back at Uni after Xmas break. Didn’t miss a day…. And he just graduated Dux of the school. I hate to think how different his life would be if it had ruptured. Or if he had the surgery here. The universe has a way of making things right.
Good luck, but I would also ask for a second opinion. And ask your surgeon how many they have done!
Sorry I am a bit late. Just as @Bsmom described their journey, I too went to Cleveland Clinic, and also was operated by Dr Mark Bain and his team.
My AVM was located in my cerebellum, middle to right. And I also had 3 nidal aneurysms. I had craniotomy 1 year ago.
Like others have mentioned every case is different, my recommendation is to research very well what Drs you see and end up with. AVMs are still rare, and the best Drs dealing with them will see around 100 - 125 cases per year because of referrals. That was my case @ Cleveland Clinic Ohio. Barrow, Stanford, Mayo, are also great places statistically.
I hope you find comfort, as we all did, knowing that our community is large and you are not alone.