Hello, new joiner here so forgive me if I am breaking codes, but pretty desperate. My beloved mom suffered a major brain hemorrhage 7 years ago and it devastated our lives… she was 75 but walking 8 miles a day, working, etc. They couldn’t tell us the cause, until she suffered another bleed 5 years later, the did an angiogram and found an AVM in the front left lobe. She has suffered seizures since her first stroke, around every six months she is hospitalized… they increase her anti epilepsy drugs each time until now, she is completely unrecognisable. Since the second bleed, the neurosurgeon got involved and is recommending open brain surgery to remove the AVM. It’s not too deep, and he seemed pretty confident he could get it out. I wanted to understand alternatives, but they were pretty much dismissed - radiation would take too long and the waiting list is 2 plus years in the UK, coiling only has 30% chance of success and the risks are the same as surgery. Given mom’s age, they seem pretty blase. But I am terrified reading some of the experiences on here of the post operative side effects. Mom has had horrible seizures an neurological defiicits as a result of her bleeds, her quality of life with even worse memory, cognition, aphasia, and seizures would not be a life worth living. However, they say that the risks are high it will bleed again. Even though they assume she has had the AVM since birth and it only bled twice, they seem pretty fatalistic and that is very frightening. Secondary to all of this - and what affects us day to day, is the huge gaping hole in understanding what is happening to mom in between seizures. She has had multiple bouts of confusion and aphasia, 6 years since her first bleed, nobody can explain it. Interspersed with that are her seizures, which are complex. They change her meds each time she is admitted with confusion (unaware of time/place, sometimes can’t speak) and say these episodes are prob absence seizures (yet as someone there with her all the time, she doesn’t have any blankness, it’s just a gradual increase in confusion and withdrawal)… So they change her meds, and when they withdraw her from one med she has another seizure. Her neurologist is a stroke doctor and doesn’t, by his own admission, understand the complexities of seizures and anti seizure meds, whilst nobody I’ve met has fully understood AVMs. One visiting neurologist told me of course, it’s all the AVM, the confusion, the aphasia, everything… but when I drill down into the why? Does the AVM change? What causes the shift? Nobody can answer. When I ask her neurologist why the other neurologist says that it’s the AVM, he says it is only the AVM by extension - as in, the bleed was caused by the AVM, the debris left in the brain from the bleed is what causes the seizures and the confusion etc. I feel the longer it goes on the less clear anything is and the more I realise even the specialists don’t know what is going on. Mom is a strong little fighter, she is so positive and love life so bounces back but lately it is getting concerning… we have had 4 admissions since the end of January with seizures or confusion…each time they changed her meds. On Monday she had confusion again, couldn’t tell me where she was or who I was (we were home) I took her to GP who referred us to the A&E clinic. Whilst there for checks she had a massive seizure, turned blue (not seen that before, apparently it’s a thing where you hold your breath but bloody terrifying to watch) then another, in the rescus ward they gave her lorazepam and she is now recovering… Two days before they withdrew her from leviteracitum which she had been on for 7 years, and put her on brivaracetam instead… they said it shouldn’t cause side effects but here we are… They now want to add in a med called cenobamate but are keeping her in hospital until they an actually find a manufacturer in the UK that does it! Nobody can explain to me why she has had bouts of confusion over the last 6 months…and why she developed a tremor in her right hand the last three weeks, which seems to be almost gone since the adminstration of the lorazepam. All they said was it could be anything and not necessarily proof of ongoing epileptic activity. Sorry, so much to unpack here but I feel so alone in trying to make sense of all this and know what to do for the best. I have come to terms with the fact the mom I had is a new person, and we are as close as mom and daughter can be, but how to navigate all this when the people who are supposed to be experts seem to know nothing… Anyway, ramble over, such a relief to come across this site and I am in awe reading your experiences, so much strength, humour, power and love in the face of something so scary. I thank you, I don’t feel quiet so alone now 
Welcome, and I sure hope we can help you out here with our collective experiences. You and your mom have been through a lot, that is an understatement for sure. I can speak from my personal experience, and I find that we are all different for sure but share similarities. The brain is incredibly complex and so much we don’t know yet, and so many unexplainable things.
I had a bleed in 2016 at 48 years old, and had no idea I had an AVM, spent several days in hospital, had some confusion, aphasia, and memory issues. Most slowly went away, except a little aphasia from time to time. I went with gamma knife due to location of AVM being in the interior of left temporal lobe, had it been on the outer edge I would have had a craniotomy, a lot less risk for me t=due to access. In 2019 I was cleared, AVM gone but did have an “artifact” a little shrapnel left in there and some "staining from the bleed.
In January of this year I had a significant seizure, first one, and am now on Keppra or leveteracetam and still in follow up. It did not make a lot of sense I did not experience seizures associated with bleed due to location, and now likely due to the scar tissue.
For me, the crainiotomy would have been immediate removal, and had access been easer I would have done that, rather than wait over two years to have it gone. I did not want another bleed. I think you will find folks join in who have had craniotomies with great success. The seizure piece is new to me, and I have only had the one. I always say that the right decision is often only known after the fact, the secret is to be at peace with the decision made with all the available information. This is more complex with the brain and uncertainties associated to it.
I’m sorry if I’m not much help, but collect as much information, and weigh the risk of future bleeds vs surgery. What stands the greatest chance of quality of life with the least risk. No easy answer. Take Care, John
Hi Daffodil, As far as I can tell from my own similar experiences, your instincts are right on target. It’s your mum’s quality of life that matters most. That means minimizing the number of seizures.
As to the “whys and wherefores” it probably depends a lot on who you talk to. Eventually you’ll find someone you feel you can trust completely.
In my own case, I’m still not sure if my AVM rupturing caused my seizures or if the scar tissue from my craniotomies causes them.
As you’ve realized the world of anti-convulsent meds is a slippery morass changing continually based on studies, anecdotal evidence and the patient’s uniqueness. They all have side-effects and some can be worse than some seizures. I submit, in the grand scheme of things it hardly matters whether your mum is enjoying a child’s puzzle or the advanced NYT crossword. The balance between seizure control and quality of life has been a 49 year old struggle for me.
My advice re the meds is to use this site a lot. Many of personal experiences including mine are helpful to know what to look for. My experience with keppra was horrendous and it might have been avoided if I had known other’s adverse emotional effects. Best wishes, Greg
Hey Daffodil23,
Welcome to Ben’s Friends. Lots of good people with loads of personal experience around here.
You’re not breaking any codes, so no forgiveness needed.
I have to say here that seeming ‘pretty blase’ is fairly common. There’s a couple of reasons for this, if you or your mother are stressed, adding to that stress by showing their concern, is not going to help. So they minimise. Another point is that often this is their everyday role and they perform this type of procedure regularly. For them it’s just ‘another day at the office’. Now, for me… …I was a ball of stress. Having the medicos minimise did not help, it only served to inflate my stress ball further.
Prior to surgery the medicos all have a get together meeting to discuss options and come to a consensus on a treatment plan. The benefits in having a group of consulting dr’s (often called a ‘team approach’) is that you get a broader overview than a single surgeon. Unfortunately, every dr I’ve seen has had a differing opinion with lots of ‘It could be ‘x’ or it could be ‘y’ …’ but then using that theory it could be ‘a’ or ‘b’ or ‘c’ or ‘d’ or… so trying to get a firm answer to some questions was near on impossible.
The brain is very unique and individualised to each person. They (dr’s) know regions of the brain and the theory WAS that certain regions solely operated certain functions. They now know this to be false and that regions work in conjunction with each other to make functions occur. If the connections between the regions are altered, for example by a bleed, the outcome, again, can be very individual. I’ve often used the example of opening your computer case and throwing a handful of aluminium foil flakes. The computer system would have short circuits all of the place and that’s if your computer ever worked properly again. A bleed can do the same thing to the brain. For some the effect can be minimal, but for some, that same bleed could be devastating.
Medications can be a minefield. What may work wonders for one person may have very little benefit for another. Balancing benefit vs side effects can also be an issue and it seems to vary for everybody. Our body’s can handle a specific medication fairly well, only for our systems to normalise to that type or dose and symptoms return. A variation in type or dose can alleviate symptoms, but they honestly don’t know what type nor dose is the ‘key’, so it can be a case of trial and error to try to find that ‘key’ in many cases.
You ramble as much as you need.
Merl from the Modsupport Team
Hi @Daffodil23 welcome to AVMsurvivors!
Your mum has got a lot going on. The guys have given you some great thoughts and I hope I can offer a thought or two that might help as well.
I’ve learnt a lot from reading people’s stories on here over the last 6½ years, so the stuff I know is based on my experience or reading others’ stories.
The impression I get about the drugs is that some people have very specific reactions to different preparations of what is supposed to be the same drug. So even if it’s levetirecetam (generic name) people find that they get on with one brand but not another. What I think you’ll find here is a bunch of people hunting round for the best case drug that best looks after them: I’m sure that sometimes there isn’t a perfect match and what your mum has been on for the last 7 years might be as good as it’s going to get (but the only way to know is to try something else, perhaps). Meanwhile, it is going to be rather more of an adventure than anyone would like.
Is it all to do with the AVM? I think the answer there is yes and no. What we know is that pressure from the AVM can cause disruption, damage from a bleed causes its trouble and even after an operation, scarring can cause trouble. So when you’re thinking about having an op, I don’t think anyone would warrant that the op would fix things like headaches or possibly seizures (it might) but an op is usually focussed on reducing the stroke risk. The reason for this, I think, is that the brain is a very delicate thing, very apt to disturbance and your mum’s seizures or seizure-like episodes could be related to old damage or to whatever her AVM is up to today.
Do AVMs change over time? I think the answer has to be “yes”. We are told that the risk of a bleed increases over time, usually by a small percentage each year. My guess is that the blood pressure in the wrong place, unchecked, grows in its size or grows in its impact over time. Sometimes it grows really slowly. Sometimes it seems to go more rapidly. It seems to be the case that unless it is removed 100% or occluded 100%, it will always continue to grow.
I tend to feel that an embolisation/coiling is less invasive a procedure than excision but there are risks to both approaches. Sometimes embolisation is done in a couple of approaches – my doctor suggested initially he might take two shots at me but managed to close in one go – but it is that overall success rate that you’re interested in. I guess, as well as the overall success rate of the procedure, an aspect to consider is how you and your mum think she’ll cope with each type of intervention. I think embolisation is very gettable-throughable but it isn’t always a walk in the park and it does carry very much the same risks as open surgery. Often, I’d say you want the surgeon to undertake what they recommend – what they are best at – rather than pushing for something they seem less happy with. If you really want a different approach, find a surgeon who knows they could do it (for example via embolisation/ coiling) and is keen to say so in the MDT meeting.
If it helps to explain what an AVM is and how it could affect things, I’ll have a go at explaining that. If it helps to explain embolisation or craniotomy, I could have a go at those, too.
Hope something here might help.
Best wishes,
Richard
Hi Daffodil
It’s a crazy world this AVM stuff! Everyone is different and the AVM affects everyone differently. I had a craniotomy for a left frontal AVM and only found out i had one after a bleed which i think is how most people do, whilst at A&E they told me i had been having bleeds on and off for years - i used to think i was getting migraines! After the craniotomy in 2017 i was left with seizures amongst other things which have to a degree sorted themselves out, however, i take keppra 2g per day, carbamazapine 600mg per day! It took my neuro ages to get the balance right however if i get overly tired or stressed then a seizure will happen so it is a total life change. My wife says i am not the man she married but at least i’m still alive - and we are grateful for that.
So i would say read as much as you can on here and somewhere you’ll find something similar to your Mum’s situation! And stop beating yourself up about it keep pressing the Neuro’s when things go wrong but remember it’s a different world now for you both.
God bless you both, you’ll be in my prayers
Love
Andy
Hi John, Thank you so much for your response and advice, I did find it helpful. I am sorry to hear about your experience, but thankful you had successful surgery and relatively little side effects since although I know seizures can be frightening. I will try and learn as much as I can, and take a balanced view when we hear for sure whether mom is a candidate for surgery (she had to have some pre op assessments)… I think I’d opt for the radiation for mom because of the lesser chance of worsening seizures and aphasia, but the surgeon said it would take years to get and then years more to work, and mom is 82. When you say you have aphasia sometimes, can I ask how it presents itself? I don’t know how to distinguish aphasia to confusion if I’m honest, and I saw in the hospital notes they had it down as post ictal dysphasia… sometimes she’ll say three words in a sentence as she can’t think of all of them, sometimes she gets half way through the sentence and can’t complete it, sometimes she mixes words up completely e.g. tablets for slippers, and other times she can’t speak at all…I am interested to know whether it is AVM or seizure related now. I know she couldn’t speak straight after her stroke, it took some weeks before she spoke properly.Take care of yourself, I hope the keppra works for you thanks again, Katharine
Hi Greg, thank you so much for writing back to me. I am so sorry to hear of your experience, especially given the age you were when it all started, and sorry to hear you struggle with all the aftermath of the AVM and surgery and seizures. I have both parents now with epilepsy and am sole carer,I know how frightening and horrible it is. I am astounded by how little specialists understand seizures and the brain in general and how complacent they seem to be in understanding what causes what. If I was a neurologist I would be passionate about digging deep into cases to map out and distinguish causality from coincidence. Well, I like to think I would! Really hoping the new meds they are trying with mom will improve things. I hope you’ve found some that is the best fit for you, thank you again for your response, best wishes, Katharine
Hi, Thank you, those are wise words and I was really interested to learn about the interconnection between different parts of the brain, I didn’t know that. Sorry to hear about your experience too… I just want the specialists in charge to show enough interest that they try to work out what is going on. Our last meeting, I had mapped out low sodium levels over the last few months, high ammonia, etc. as possible side effects of various drugs and marked confusion episodes but they just say it all could be anything, all we can do is try different drugs, ignoring the fact it could be the drugs that is causing much of the problems. Also one neuro told me it was all down to the AVM but he said different doctors will have different opinions, I don’t mind that if they can explain why they have differing theories but when pressed, they just seem to get all vague. Thanks again, Katharine
Hi Richard, thank you so much for your response, wow, so so helpful. You’ve given me more clarity than I’ve had from all the doctors so far! I didn’t know the AVM continued to grow or that its effects could differ day to day… but after I read that, I looked it up and it seems it does continue to grow and over time the blood pressure in the vessels (?) can get higher… that is quite scary. Can I ask what you mean by the embolisation carrying the same risks but more get through able? Also, what about the fact the neurosurgeon said it only had 30% chance of success? I thought radiation sounded the best, but he dismissed that as taking years to get in the UK because of the waiting list, then another few years to work… I don’t know how mom will cope with any of the procedures, what would I base that on? I have been told she had a big bleed (first one) and that her brain is very very fragile, she is also 82. On coming across this site I have learned that once they get rid of the AVM via craniotomy (the surgeon didn’t call it that, that in itself sounds terrifying) that it could then disturb the brain cells surrounding it and that she could end up completely brain damaged, unable to speak or with no memory at all, or with multiple seizures every day… all worse worse case scenarios that scare the hell out of me. Mom always had a premonition something was wrong with her brain. When she was pregnant with my brother dad says she complained of a wooshing sound ‘like trickling water’ in her brain. She then had personality changes. She was never diagnosed with anything but as she got older she used to say to me her brain ‘was going’… however, her personality mellowed out. She had her bleed and aspects of her personality changed - my dad says she went back to how she was before she was pregnant. Anyway, point of me telling this is that I think her worst fear would be to be so brain damaged and aware of it. This is my fear if she were to have open surgery. I don’t know if I’m now over panicking because of the experiences here, but given the extent of her existing damage, maybe its warranted?
Thank you again for your reply, I’ve learnt a lot and it means so much that you’ve taken your time to write. Best wishes, Katharine
Hi Andy, thank you so much for your kind words and for taking the time to respond. So sorry to hear about your experience too, both with the AVM and the seizures. How did they know you’d been having bleeds for years? I ask because mom complained of a rushing water sound years ago when she was pregnant with my brother and had some personality changes. I had always wondered since finding out she had an AVM if it was possible she had had a small bleed back then, though they didn’t mention that. That’s a lot of seizure drugs you are on 
mom was on 1500mg keppra twice a day and eslicarbazapine at one point, though the latter didn’t work for her she had low sodium and confusion and was always falling asleep. I am hoping the new ones will work a bit better, but as you say it takes ages to work out what is right. you sound incredibly positive and resilient… I try to see the silver lining with mom, the whole stroke has made her more relaxed in some ways and we have gone on holidays, she has worried less and so I cling to those positives. It could be changes to her brain or it could be that such a life changing event transformed her perspective I suppose. Thank you again, I will keep reading. Take care of yourself, Katharine
So, there’s a lot you’re asking about. Let me answer one or two things and you can ask more about the things that are most important to you.
I would say I had the same whooshing sound that your mum had. What that was was (in my case) the blood from an artery that was connected to my right transverse sinus and it was pumping turbulent high-pressure blood into the vein and travelling past my ears, as you can imagine, once a second – each heartbeat. For me, it started really quite quiet but the noise grew over time quite quickly and by the time I had my operation, it sounded like the washing machine on pump-out, 24 hours a day! 
It worried the hell out of me. Properly.
I went to the doctor at the point I’d googled “pulsatile tinnitus”, “bruit” (the noise of the blood flow) “AVM” and “DAVF” (the specific type of AVM I have). It took a whole year from discovery to embolisation.
Arteries are high pressure vessels with reinforced walls, veins aren’t. They are designed to carry the depleted blood at lower pressure back to the heart. As you might imagine, arterial pressure blood flowing into a vein travels (potentially) both “upstream” and “downstream” of the flow that is going on in the vein. It can stretch the vein and if it stretches too far, it can rupture. Also, if the pressure is high enough, it can counteract the normal flow through the vein, meaning that the normal flow is stifled and some tissue that is starved of oxygenated blood may die off.
Anyway, all of this frightened me to bits and I went to the doctor.
I was recommended for a catheter embolisation procedure. This is to make a tiny incision into my femoral artery, at the top of my leg, feed in a fine tube (catheter) and navigate it up to the relevant part of my brain. If you have an angiogram (which is a method of diagnosing the layout of an AVM) a catheter is used in a similar way to inject contrast material to observe the layout, while on an x-ray table. With the embolisation, glue or coils or other “embolic material” is injected into the AVM to bung it up and effectively put it out of service. This is what I had. Just glue. “Lots of it!” according to my consultant interventional radiologist.
How bad was the operation? I basically came away with a 6mm incision in my groin, a foul -tasting mouth and a decent headache. The contrast material used to lay out the pipework on screen gives you a hangover and the glue obviously has a solvent in it. You end up dispersing these things in your body, so you have a headache and you breathe out the solvent. I was in hospital for about 3 days. My consultant said he might need two approaches to the embolisation (reflecting in my understanding that it is often not a 100% success in the first approach) and I had an angiogram about 7 or 8 weeks later to look for any further work. I was all done in the one sitting, which the consultant had said after the initial op that he thought he had got it all in one go but he was able to confirm at the angiogram those weeks later.
I have to say I’m a wuss. I’m not especially good with needles and I can definitely faint at the sight of blood (mine or other people’s!) However, I felt after the op that if I needed to go through it twice, it was something I’d be able to get through again. I think the anticipation of the unknown is one of the biggest fears.
What are the risks of an embolisation? There can be complications from the insertion site: you might get a blood clot. The catheter is navigated by extending a bent wire out of the end at each branch of the artery and that can tear the artery wall. The catheter can be too large to enter a vessel, creating an ischaemic stroke. And when depositing glue or other embolic material, it can set too slowly or set too quickly and either travel to the wrong place (again creating a stroke) or make fully closing off the AVM impossible via a second approach.
So, far as I can tell, it does have the benefit of being a lot less impactful than a craniotomy. If the AVM is accessible via craniotomy, then it seems to be held that craniotomy is more successful than embolisation, and for a single approach with an embolisation, the success rate may be as low as 30% (or it could be that the specific features of your mum’s AVM make it less successful than average: a lot of statistics we read are general, it is the surgeon’s view of our own specific situation that is really important to understand, I feel).
I have to say I came away from my embolisation quite astounded at a 6mm cut. I definitely felt that it was something I could do again if needed. However, you need to understand from the doctors which is the best treatment for your mum’s situation. I do think that if they feel your mum might bleed again in the coming years, the wait for gamma knife may be a wait too long: this is often the reason for not recommending radiotherapy.
I hope this helps. If there is anything you still want to ask, just ask. We’ve been through the same worries that you two are going through and there’s no value in being reticent to ask.
Very best wishes,
Richard
My aphasia is pretty mild now, and is basically not being able to recall the correct word. Often it is simple words, but I know when it happens and am able to adjust to other words. This sometimes presents as a little bit odd way to say things. People who know me, know when it happens, those who don’t either don’t notice or have that momentary thought of “that was an odd way to say that”.
When I had my only seizure this year, I couldn’t find really any words when talking to a colleague. I remember it clearly and chalked it up to being really tired. He was worried about me and said he would come back, as he was walking down the hallway he heard a thump and it was me hitting the floor. I couldn’t even out a sentence together. Take Care, John.
Hi Katharine
Hope you and Mum are as ok as can be expected, my previous bleeds were diagnosed by what i thought were migraines and as i understand it some marks that showed up on a scan my Neuro showed us some scans and there were these dark spots which he explained were previous bleeds but i think that was in conjunction with the unexplained migraines - since the AVM was removed i have not had another migraine although i do have a permanent headache its only a dull one not like a migraine!
You will know your Mum better than any one else and if things don’t seem right then get on to her Neuro ASAP and get them to see her we found it vest to write down our concerns and go through them with the Neuro that way we got everything covered but as you know it does feel very daunting when dealing with AVM’s as has been previously explained on this chat everyone is different and will experience things differently as well as different symptoms. We had to put our trust in our Neurologist and things were ok. I cant talk about other procedures as i only had a craniotomy which wasn’t too bad apart from a ruddy great scar across the top of my head - my wife says it looks like an alice band! I am completely bald so it is very obvious but that is advantageous as people can physically see why i have my deficits! And to be honest i don’t really care what other people think - its only our loved ones that matter. So Katharine take care of your Mum and yourself make plenty of notes for the Neuro and keep on at them and you know there are plenty of us on here to try and help.
God bless
Andy
Welcome to the family & sorry to hear about your mum.
I was told after my bleed that I could opt to do nothing, however not guaranteed if I suffered another bleed I would come out the same physically/mentally or even alive… this was enough motivation for me personally at the time to go ahead with surgery for removal.
If the medical team are confident they can get to it then it’s definitely something to consider cause as I stated if it bleeds again it’s not 100% she will survive… always best to get another opinion if stuck to help with any decisions.
I would definitely seek further advice on her seizures cause there are medications out there that should be helping her, but sometimes finding the right medication can take time from what I’ve read… surgery is not a simple decision to make but again you need to weigh up your current pros/cons and what is best for her… God bless!
Thanks Adrian, so sorry to hear about your experience, especially at such a young age. I hope you don’t suffer too many side effects from the surgery. I think you are right, I need to be mindful if she has another bleed it could be even worse; but I am afraid if she has surgery she could end up in a terrible state, with no quality of life for the remainder of her years. She already has seizures, occasional aphasia and terrible memory. We’ve just switched meds to these new ones, she is only on 12.5mg of cenobamate so far (in addition to bivaracetam) but already she is has gone weird… few days ago she was chatty and engaged, now she is dopey and not speaking the plan is to wean her up to 100mg per day too - I hate to think… I just feel that for some people there is a limit to the amount of a drug they can take. Anyway, thank you again for your advice and really inspired by your bravery
I hear you loud & clear & really understand your concerns as most here have had the same thoughts & made very similar difficult decisions… it’s the risk you take with any surgery etc & some will say a change in quality of life may be enough to pursue than to risk no life at all… trust your medical experts & get an understanding of the risks in her situation or even a second opinion.
I was told I had 95% chance of successful removal & a chance I’d live with a limp from surgery… I’m here today & have no limping so it was worth every moment… God bless!