My story started the morning of October 20th 2024 with a minor headache. I have always had migraines and have gotten used to having them. This one was no different and as part of them I have always gotten an aura. My husband was driving and I started telling him this aura was particularly bad and that I probably would not be able to drive. My children were all in the back seat (6yr old, 3 yr old, and 6 mo old). We were on our way to church and once we got to the parking lot I started to panic and said I felt bad. That is the last thing I remember. When I came to, I was in the ambulance and my hubby said I had a seizure and we were going to the hospital. My children stayed with friends at church. It was all surreal. We were only minutes away from the ER and got there in no time. Once there I had a CT scan and shortly after had an MRI with contrast. Later on the doctor came in and said it seemed like I had an AVM and needed to be transferred to a different hospital that has a Neurology department. I was not explained what that meant and did not really react. The doctor seemed way more concerned than I was. I took an ambulance and my husband drove over to meet me at the other hospital. When I got there, I was very surprised to see them escorting me into the ICU, because I felt fine. The doctors always checked my cognitive, visual and physical response. I never really asked many questions, I just let them do what they needed to do. The next day I had an angiogram done to be able to get a better view of what was going on. I just wanted to go home and see my kids again. I went home on the 3rd day. I followed up with all my appointments and something I was never told during my hospital stay that there was a possibility that I may have had a small brain bleed. I still have not had a clear answer about that, partly because I did not have any physical or cognitive deficits. Now I am on keppra twice a day and cannot drive for 3 months, which I should be up to by the end of the week. Itâs been a bit of a roller coaster, but I have kept a pretty positive attitude the whole time. I talk to people about it freely and do not get emotional. My husband always jokingly called me heartless and itâs finally paying off⌠Now for treatment I will be getting a craniotomy with embolization in a few weeks. My AVM is on my left occipital lobe 3.8x2.8x2.5cm and seems to be pretty superficial. The doctor seems pretty confident that he will be able to remove it. All I hope for is to make it through the surgery, even if I end up with some visual deficits. The one thing that is really irritating is not knowing what things will look like post op. The doctors are always saying things will be assessed post op. I know there are lots of risks, but holding on to hope that everything will be ok and leaving it all to God.
Hey there,
Iâm Merl a member of the Modsupport Team here at Benâs Friends. I donât have an AVM but have required a couple of craniotomies to deal with another little nasty in my head and I have a shunt to drain the fluid off of my brain.
That rollercoaster? Ahh yea. Having found the issue, the AVM, is good thing. Now, to deal with it. Iâve often called the whole journey a rollercoaster. It sounds like you have a very supportive husband and this is a good thing too. I could not imagine all of this without my wife, I honestly donât think I couldâve done it without her by my side. Iâd had headaches for years but they were dismissed as âgrowing painsâ, and then âstress relatedâ. It wasnât until it became urgent that the surgical side started. As Iâd had headaches for years I thought I knew all about head pain. Neurosurgery gave me a whole new scale of pain. It was shocking. I didnât think pain like that even existed, just WOW intense. But over time Iâve learnt how to better manage around it.
Neurosurgery is not just an assault on the head. It can be an assault on the whole body and affect EVERYTHING. Some people can go through it all and have a miraculous outcome, but for some things donât go quit so smoothly. My initial surgery was shocking, but I slowly got back into life. I thought Iâd do the same with the others but, phew, each one has hit me harder and harder. My last major neurosurgery was back in 2013, that year I had 3 operations and the outcome has been less than Iâd hoped for. The initial plan for me was go in, get it, get out. But when they got in there they found it was growing a bit close to brain structures I need. So rather than remove it all, they reduced itâs size.
Nobody, not even the medicos, can give a concrete answer as to âwhat things will look like post opâ. They may offer a âbest case scenarioâ and âworst case scenarioâ but a post op assessment is about the best answer they can give at this time. I had to get to a point where I accepted I had to hand all control over to the medicos, because I had no control over any of it. For a control freak like me (Iâm in control of me) to hand that control over was a huge internal battle.
As I tell many members, setup your home environment. A safe space for you. For me, I needed a dark, quiet room. Somewhere to isolate myself. Too much stimuli was an instant headache trigger. Loud noise, bright lights or too much motion BOOM. Instant headache. I needed a place where I could switch off. Block out curtains were a must for me.
We all hope/pray/beg that you come out the other side wondering what all the fuss was about, but on the off chance things donât go so smoothly itâs much easier to have some things setup for yourself BEFORE you start this journey and please remember we are here if you need.
Merl from the Modsupport Team
Hi there, I had a large right occipital AVM diagnosed following a bleed. I recovered well from the bleed and know exactly what the rollercoaster of treatment decisions is like. So well done keeping it together so far! Your AVM sounds quite large but itâs good news that itâs close to the surface and operable. For me it was a challenging surgical approach so we tried gamma knife which didnât work, and I then had embolisation by a specialist surgeon who has a lot of experience in dealing with large AVMs in this way. This was successfull but resulted in loss of much of my left visual field which they believe will improve over time. There was no bleeding or ischemia, but the AVM was deep and sat atop the optic radiation. Yours sounds more superficial and hopefully less risk of similar complications, but you need to discuss this with your surgeon.
My one advice to you is to take your time and do your research and carefully select your surgeon. Donât just accept the first one offered and donât rush. Your risk of a bleed in the near term is likely to be very low, but the surgery is permanent. Make sure youâve gone into it with as much knowledge as possible and feel confident in the surgeon based on an understanding of their skill and performance.
AVMs are relatively rare and as Merl said the range of outcomes is wide, so no surgeon will be able to guarantee a flawless outcome (and if they do I would run a mile!). That said, the skill and experience of the surgeon is paramount to minimise the risks and maximise the chances of a complete resection. You should be satisfied that the surgeon has extensive experience in operating on AVMs and definitely ask for their results, by which I mean as a minimum ask how many theyâve done, what the complication rate has been, and what specific risks they envisage for your surgery. They should be giving you indicative percentages from peer reviewed studies so you at least have a frame of reference to judge the risk of the surgery. A 5% risk may be acceptable, but the outcome applies 100% to you if youâre in the 5%!! You just need to understand the risks and be able to accept them upfront. I was offered surgery and was given all of this information. It was pretty high risk with an 25% chance of neurological worsening ranging from mild and temporary to âsevere and very disablingâ. I felt this was simply too risky and hunted for alternative options, and eventually went with an endovascular specialist in Germany who had dealt with 1,500 AVMs with a complication rate around 6%. He has not produced a study of his patient series unfortunately but his reputation was sufficient for me to take the decision. My doctors in London also vouched for him as a well respected neurosurgeon.
All the best,
Jonny
Sorry to hear about your AVM diagnosis, but rest assured if they say they can get to it and remove it, then I would take that and try and be as positive and stress free as possible⌠with 3 small children myself, the stress part is easier said than done lol!
Please rest knowing there is light at the end of the tunnel and youâll recovery much quicker than what you anticipate with the technology of today⌠I was 30 when I found out I had an AVM in late 2010 and had a bleed 1 month later before I even had a chance to discuss what options I had available⌠they performed surgery a few weeks later to remove it and the recovery was slow but not as bad as what you would think for brain surgery!
Sending prayers to you and the family and please keep us updated and feel free to ask any questions⌠God bless!
Thank you for sharing your experience. Yes, Iâve struggled with the idea of an almost stranger opening me up and basically putting my life in his hands. Luckily I live in a very Metropolitan area, which, I think, gives me better options. The doctor did express I have a 20% chance of losing some of my left visual field. I guess we will see how much, if any.
I think the piece I would add is that with your AVM being on the surface, thereâs every reason to think you should have a very successful outcome. Embolization + surgery as an approach is very common and very successful and it being in the surface / relatively accessible should mean youâll come away with minimal effects, though it sounds like youâve been told some of your eyesight is at risk. We have others here whoâve had an impact on their peripheral vision, so if you need others to talk to about living with that, theyâre here.
It is important to have a neurosurgeon who is wholly familiar/expert with brain AVMs, though as you say being in a metropolitan area is a great start. Iâm less familiar with what is available near LA, though we have Stanford University Medicine in SF and Barrow Neurological (in AZ) as world class if that helps. Unless someone tells you that it is urgent to get the treatment done, go and get a second opinion. You can probably get a remote second opinion from both Stanford and Barrow (Barrowâs costs just $100).
Hope these thoughts help. Donât feel that Merlâs long and torturous journey with his medical condition will be the same as an AVM relatively on the surface of your brain.
Very best wishes,
Richard
Hi there, AVM_LA
Your AVM sounds similar to my sonâs, who also had embolisms + surgery. Heâs now 3.5 years past 100% successful surgery. Some visual impairment, but not enough to limit driving, etc. If youâre able to look up my past posts and have some more questions I could help with, please let me know. Heather
Sorry to hear of you and your family thrown into this AVM world whirlwind so suddenly. Itâs not a fun place to be. But I very much agree with Dick about its placement being such a positive thing for successful craniotomy. I also echo his touting of Barrow Neuro Institute in Phoenix-St. Josephâs Hospital. Their neurosurgeons are indeed world class with the chairman being quite world renowned. He successfully removed my daughterâs very large, complex and deep-rooted AVM in 2021. Their portal for evaluation of your case for $100 is quite the sweet deal and their turnaround on it is pretty quick. If they tell you itâs straightforward and relatively easy based on its location then that may give you more confidence in having it done in LA. But I also agree with everything Indalo said about evaluating exhaustively whomever you allow to do it. The number theyâve done in their career and complication rates are things you must know. Many prayers for successful surgery with no vision impairments.
Hi there,
Itâs been 14+ years since my surgery. Also left occipital lobe. Iâm happy to talk and tell you about my experience if you like.
All the best to you,
Heba
Thanks for the info. So far I feel great about the guy doing my surgery. He does specialize in avms. He actually did training at Stanford, UCI and UCSF. He seems great to me. Regardless of who I go with, there is no guarantees of a great outcome. My options were clearly explained to me. Only doing embolization would not be a great option because of severe stenosis in one of the artery connection to a vein and radiation will be less than 50% effective due to the avm size. I am comfortable with they guy doing my surgery and I feel a second opinion will not give me any better option besides debt. Getting a second option seems like something to do for self or others edification and peace of mind. I already have peace of mind with my choice. But I understand peopleâs need to have that.
Hi there,
Sounds like you had a rather abrupt introduction into the AVM world but also a fortunate one as youâve been diagnosed prior to a major bleed and can hopefully be successfully treated without the AVM having devastating effects for the rest of your life. I know you mentioned that youâre not going to seek a second opinion, but I wanted to let you know thereâs a well respected neurological clinic in Arizona that provides a second opinion for a flat fee of $100 USD. Hereâs the link. How Our Second Opinion Program Works | Barrow
As others have mentioned, brain surgery can have wildly different outcomes depending on a number of factors. My experience with AVM is very different from yours as itâs my daughter who had one. She had an extremely sudden and severe rupture just before her 10th birthday and it required emergency surgery just hours after followed by more surgeries and 8 months in hospital. I think the statistic is that 50% of people with an AVM find out because of a bleed. We are beyond fortunate that she eventually made a good recoveryâsheâs 18 nowâbut she is left with lifelong deficits and obviously our lives were turned upside down for years.
I hope all goes very well for you with your treatment plan. I just wanted you to know about Barrow in case you werenât familiar with them.
3 posts were split to a new topic: Central AVM - Act or Just Monitor?