Hello friend: Intro Grade III/IV Right Temporal Lobe

[BAAS]

Hello,

I am 27 Male

I have been meaning to post for nearly a year since my surgery. I have struggled to find the words… there is much I would like to say—though it is difficult. I am simply going to tell a story, react as you will.

In April of 2024 during a physical I mentioned that my father had an aneurism in his 30’s and my mother’s uncle also died of a brain aneurism. I asked if I could get screened to which my Dr. agreed and scheduled an MRA.
After the MRA, the nurse asked me, “would you like me to have someone look at this right away?”
“I don’t know, do I?”
… she wasn’t able to get anyone. That evening on my portal I read the write up, “There is a large arteriovenous malformation centered in the posterior right temporal lobe.”
I remember crying that night and my mother being on the phone with my aunt.
I was able to get into Brighams & Women’s the next week for a meeting, which lead to weeks of meetings, scans, and Angiograms.
I had a Grade III/IV AVM (6 cm at largest) in my posterior right temporal Lobe… ultimately surgically resected July of 2024.
Everything happened so fast. Though it was incidentally found, surgery became the major life event.
I remember first being told that there was no need to worry as I had lived for 26 years with this, and had no problems. “The good thing is that we found it. Now we can choose how to manage it” … I was presented with observation and surgery as the options… Radiation was out, for it was too large, and embolization offered other risks and was potentially non-curative. “surgery is a cure”… At some later meeting the Dr. pointed out “micro hemorrhages” and the narrative of “no need to worry” turned to “can you afford to wait?” and surgery seemed like my only option: both in terms of the statistics, the Dr’s narrative, and pressure from family.
Wrapped up in all of this were narratives of how 1. the area of the AVM had no capillaries, and functions that would have been there likely already were put elsewhere through my development.
The area was described as “non-eloquent” to neurosurgeons or not important or measurable to contemporary science.
In a meeting discussing surgery, the Dr. said I would most likely lose my left peripheral vision and sensation in my left limbs. When I asked about non eloquent or right-temporal associated functions… I was told,“we don’t know”…
There was discussion about how it being in my right temporal lobe would cause peripheral vision loss gradually and unnoticeably throughout life. There was a risk of seizures developing as well.
Ultimately, surgery was presented as a choice to make: either risk hemorrhage/stroke over a lifetime, or surgically remove it and take on all the risks that cutting into the brain offers (and all the unknowns)… it ultimately did not feel like much of a choice. I’m 27, 26 at the time and still live with my mother and am financially dependent on her. The amount of pressure I received from her and the Dr. seemed insurmountable.
My question then and still remains what causes hemorrhage? Are certain populations more at risk? Diet & Lifestyle factors? If one could keep blood pressure low throughout life, could this be enough to mitigate?
My questions were ultimately dismissed…

Now, on the other side… nearly a year post-op, 27 going on 28 I have lot of regret about the surgery and ultimately think it was the wrong decision (or at the very least was rushed into). Bold, I know. Since surgery was performed, now all of those unknowns have become known. The concerns I had around the right temporal lobe and its functions… they have become the central issue of my life now.
Since surgery, the entire visual field (the way I perceive reality) has been completely altered/changed. Life looks like a poor rendering of what it used to, almost like a video game from the 2010’s. It is most prominent/noticeable with faces: people do not look the same, including myself. I notice that there exists a style or filter that is placed on reality that shifts every so often (sometimes weekly, sometimes monthly). Faces look different in the same way on everyone. I can recognize everyone, but our faces all seem distorted in the same way. Sometimes everyone looks really good or attractive and then sometimes we all look quite ugly… Sometimes things look brutal: like i cannot understand a smile… it is reduced to teeth sticking out of flesh, and I cannot see or make sense of how one could see beauty in it.
I struggle to know whether or not I can consider myself my “self” at least the one from before surgery. I think the answer is an obvious:no. I am what remains, what wasn’t removed. I feel like an entity, just beyond this world, behind a veil… still operating, just from a distance.

I feel completely alone.

There are other changes & things… but I’ll leave it here for now.

[Roduez]

Hello Male 27,

My name is Adam. I’m 51 now. I work as a carpenter, and I’m fit and active.
I suffered a seizure in 2018 on a beach where I’d been surfing. (I’m a crap surfer). I felt weird and got out and sat on the beach. I remember the sound of the air ambulance and the feel of the wind from the rotor then I woke up in hospital without my wetsuit.. I have an AVM right side. Parietal/ Occipital. it’s about 5cm or so. I had an angiogram and had meetings in London where surgery was offered, or Gamma knife. I was informed that due to its location, that removal by surgery would 100% affect my left side peripheral vision permanently, though to what extent was unknown.
Gamma knife had a max 60% chance of success, but there were possible/ probable complications also unknown. In the end I turned them down, and opted to live with it as I felt the risks were too high. Time will tell. I didn’t feel undue pressure to have any procedure, except that the data from the angiograms was still so fresh that it would give the surgeons a better chance to be accurate. There seemed to be a narrative that gamma ray was ‘harmless’ and ‘unintrusive’ but the idea of permanently scarring my brain didn’t sit well with me.
I realise looking back that I’d been experiencing subtle effects from the AVM all my life. Strange bodily sensations where I felt my arms and legs were blown up like balloons. Strange smells and tastes, temporary blind spots, deja vu, dizziness, occasional fainting etc. I even had a small fit at home once when I was young, but I kept it to myself and didn’t tell anyone.

Anyway that’s the intro. Since 2018 I’ve managed seizures with anti epilepsy drugs, Keppra and now Briviact. A couple of times symptoms have returned so strongly I had to give up my driving license for a year.

I’ve experienced this exact sensation you’re talking about. Look up Prosopometamorphopsia on wikipedia and I think that sounds close to it.
It’s as if the characteristic of an object is transposed onto other objects and causes them to have the same characteristic.

This is most noticeable in faces, particularly with old faces making everyone else seem really old. If the ‘trigger’ was a really old face, so much the better. Everyone I saw would age to that degree, apart from the very young. They seemed immune. Not just age though, The shape of someone’s face, or mouth would transform everyone else’s faces the same way. In any case, the effect would be triggered by something unusual let’s say. A big mouth, or a big chin etc and the effect could be magnified on everyone else. Not always, but sometimes. Like a snapchat filter. Not that I use Snapchat, I’ve just seen it done.

Not just faces though, I once saw the front of a crashed car, then every other car I saw for a while had a smashed in front. I once saw a 50’s American car and all the other modern cars seemed to have 50’s styling.
Once while waiting in hospital I saw everyone was massively fat, just because a slightly overweight person had walked by me. I checked by looking at my dad who is not overweight and he was fat too.
A you tube video with a slightly computerized effect made all the other videos have it, and then my own face in the mirror was like it. I’ve seen my whole head the same shape as a lightbulb, and my whole body thin from the waist up like a bottle. I remember thinking, “If I stay like this I won’t be able to breathe”
I’ve seen things squashed up too thin or expanded out like a widescreen TV. Things which I know are rectangular were square or vice versa.
The thing is, whilst the effect is going on, eveything else is normal. The whole scene is completely ordinary except that suddenly EVERYONE has a really old face and they don’t know. You even interact normally with people, buy bread etc just they’re all old all of a sudden.
Sometimes this is pretty freaky, sometimes it is funny. For me it is not permanent and is a sign of ‘activity’ from the AVM, for want of a better word. I call it the octopus.
Forgive the long ramble, but I thought if I described a lot of things I’ve seen, you could see that it appears to be the same effect as you are suffering from. Other things to look up include Palinopsia, and Metamorphopsia, both of which I’ve experienced, as well as not having a clue where I am in a really familiar place.
I don’t know where I’m going with this, i just want to offer some support and so you know you’re not going mad, it’s just your brain has changed shape and bits of it are short circuiting now.
I don’t know if you’re taking medication. My limited experience is that Keppra seems to have worked best so far, but I am trying Briviact at the moment as Keppra made me irritable. It seems that certain meds suit certain people better.

I’ve got no answers mate, but in some small way you’re not alone, and I hope that helps. Feel free to ask me anything if you want. I hope you’re ok.
Adam

[DickD]

Great bit of sharing, guys! It is wonderful to me that @BAAS’s story has provoked @Roduez to share and there’s everything to gain from being able to share our own real life experience with each other. It is fantastic to see that you are not alone.

@BAAS

My question then and still remains what causes hemorrhage?

I can answer this, hoping that it might help a bit. Basically an AVM is a direct connection between an artery or bunch of arteries and a vein or bunch of veins. Now, the normal way in which this occurs is that you have a capillary bed in the join in each case and the capillary bed is the place where oxygen and nutrients are transferred from the blood stream into the tissues of our body. With an AVM, the capillary bed is missing and often a twisted set of overgrown vessels are in its place, conducting high pressure arterial blood straight into the veins.

The trouble with this is that our veins are low pressure vessels: they don’t have the reinforcement that an artery has. When that reinforcement on an artery fails, it bubbles out and is called an aneurysm. When an AVM pumps blood into a vein directly, the risk is that the vein bags out in a similar way but more quickly than an aneurysm perhaps, due to the lack of reinforcement in the veins at all.

So the risk is that you end up with a haemorrhagic stroke: one where the blood bursts out and damages your brain.

AVMs are often considered to be congenital defects: things that were formed in the womb as part of your development, so most people will have had their AVMs from the very beginning. How much it bags out and the time frame over which it starts to fail is (as far as I know) unique to each of us, though obviously there are statistics which doctors can use to talk to us and give an idea of how urgent intervention may be. These are parts of the near-impossible decisions we have to make.

Personally, I don’t think it is good to regret the near-impossible decisions that we have to make. Life is different for all of us, I think: for some, not bad (I’m ok but I’m definitely a different person than I was, I think much more appreciative of life, actually) for others it’s a big challenge. You’ve got a heck of a challenge but I’m sure there are a bunch of people round here who’ll say

don’t give up

life is still what you make of it.

Lots of love,

Richard

[Roduez]

Hi Richard,

Yeah I’ve been feeling that I should say something at some point on here, and have read a lot and received a lot of information about people living with AVM for which I am grateful. I guess this particular story is one that hit me because of the decision process that had to be navigated in terms of potential treatment, and how that feels, and also the specific visual effects that ‘Male 27’ was describing were very relevant to my experience and I felt I should share that with him.

A lot of the stories on here seemed to be not as directly relevant to me I guess, even though we all have an AVM in common.
Maybe with this story, which I think is more of a rarity is discovery of an AVM incidentally rather than as a result of an emergency, a bleed, etc. Although I had an emergency for sure, requiring significant medical attention, I was initially treated for encephalitis before any scans were done as at that point I was an unconscious person who’d had a seizure of some kind and the doctors couldn’t hang around to hedge their bets while they waited for scans.
Then, after all that, someone came to my bed and told me I had an AVM. That was when I was introduced to ‘The Octopus’.
I guess I related to ‘Male 27’ because the treatment option of ‘letting sleeping dogs lie’ doesn’t seem to be commonly presented as a viable alternative. I’ve been fortunate to receive incredibly expert advice and opinion from a huge array of specialist experience and knowledge, but the underlying thrust of it seemed to be that an AVM was a problem that needs sorting.
A lot of people only find out about theirs when it erupts with potentially very serious consequences, so I’m not downplaying the seriousness of it, but I bet there’s a lot of people who live their whole life unaware that they even have an AVM. I decided on balance after weighing the evidence that I couldn’t take the risk of damage to my brain tissue which will certainly occur with resection or gamma knife or embolization, no matter how ‘simple’ the presentation of the AVM, or how expert the surgeon and after care.
In my case the AVM is very close to the surface so resection would likely have a 100% success, with permanent visual field loss due to it’s location, (parietal/occipital), but that the surgery would be straightforward. My AVM is quite large (5cm+) so Gamma would be at the very limits of it’s capabilities, and the effects of brain scarring, necrosis and other after effects would be unknowable, but likely result in visual defect and unlikely result in ‘obliteration’ of the AVM. I live in a rural area and do a lot of physical work so at present I’m very dependent upon being able to drive.
On balance I chose to ‘let sleeping octopuses lie’ although since 2018 when I first became aware of it, it has awoken more than once. Also it has wriggled it’s tentacles throughout my life, I just didn’t know what it was. All my life I’ve had left side visual field loss after/ during hard exercise for example.
The thing we share in common is that we are all ignorant of AVM’s until our own one makes itself known. Then we all go to med school to learn about them. Then we all go to neurosurgery school to learn about the ins and outs of craniotomy, embolization, gamma knife surgery, angiograms, CT scans, MRI (with or without contrast) AED’s, EEG’s and ECG’s. We learn about lobes, brain functions, capillary beds, aneurysms, strokes, epilepsy, seizures (of all varieties) arteries, veins, ‘oxygen steals’ vessels, blood pressure…the list goes on.
Then we learn about decisions..
Everyone on here has made one, is about to make one, is weighing one up, is glad/regretful/unsure/scared/ can’t wait to get it over with/ had no choice/ was out of their hands/ has a friend who…etc.. Either way there is a choice at some point and no one’s situation is the same. There are probably a series of choices, it’s an ongoing process. One decision will probably lead to another.
Thank you for being a moderator, you and others who perform that task really help people on here who are navigating this, myself included.
Thank you to all other contributors for posting your stories, questions, experiences and information. it all helps…
This has become rather a long essay. I hope it will help some people. Maybe I’ll post the straight up story of my octopus so it’s easier to read.
I hope you’re all ok out there. I hope today finds you well, Whatever you’re going through.
Cheers,
Adam

[DickD]

It’s great to hear everyone’s story, to be honest. I think it takes greater courage to let an octopus occupy your mind but I’m also sure that it is often the better option.

In the US in particular, I tend to feel that it is important to get multiple opinions on brain AVMs, so if you were ever tempted to do something about it, go and get a couple of opinions. And the other feeling I have is to get opinions from the major neurosurgery practices not just the local ones. Since these things are rare, I think we need the expertise of those who have dealt with such things most often.

The most amazing thing for me about your story and this forum is that you’ve patiently waited for the moment when your story fits that of another: it sounds like you’re both having very similar effects from your AVMs, or from the effects of surgery: and what you describe is even rarer than most. I love the fact that we have a forum here where even the rarest can find someone dealing with the same trouble because it is that real, first-hand experience that means so much to others.

Thank you for sharing because I think it’s a brilliant, touching thing to be able to do.

[Roduez]

Hi Richard,

Thanks for your reply. I think the AVM survivors community is great and I’ve certainly got a lot from it. There’s such a wealth of information from everyone’s experiences that you can gradually build up a picture of what it means to have an octopus on board, and be guided in your decision as to what to do about it.
I think the prevailing wisdom appears to be that they are considered potentially dangerous and therefore should be removed, but that there is more room in the dialogue now for leaving well alone. They might not necessarily be a ‘time bomb’ even though sometimes we hear them ticking. I’ve lived with an octopus now for 51 years, but I didn’t know until about 7 years ago. In hindsight I realise that various hitherto unexplained things in my life are down to him. (my octopus is male I think, but yours might not be..)

Just yesterday at work, all fine, then he had a wriggle and my vision went awry and I had to take a pill and go and lie down for a while until he calmed down again.. Being introduced to my octopus has meant a few changes in my life for sure, but some of them very positive. I drink a lot less than I used to, I mean a lot.. In fact I’m drinking nothing at the moment just because he’s not happy about it.. I’m a bit annoyed about it because I like a shandy, but I’ve got a clearer head and a heavier wallet..

In a funny sort of way, I think if he went I’d miss him! That said I’ve no wish to make light of a situation which for so many others in this community has been absolutely life changing, and much more severe and dangerous than my own experience.
I really appreciate the community and I’m glad to finally add something to it. Everyone’s experience is unique, but so much of it is shared that it really helped me to make a decision, and reinforced the path I have chosen so far.
I’ve been fortunate that my first major seizure happened within a helicopter ride of Plymouth where they are pretty good at brains. I am also very fortunate to live in the UK. Even though our health system is under strain at present, I have paid not one penny for my treatment.

I really feel for those of you across the water who might well have a huge financial consideration on top of a challenging and potentially life changing physical condition, especially now with that mad orange guy running the show…I don’t know where I’d be if I’d had to pay for everything..
Ambulances, hospital stays, multiple MRI’s, CT scans, consultant appointments, follow ups, 7 years of medication and counting, the list goes on… I have a lot to be thankful for. The air ambulance bit is a charity which operates in primarily rural areas in the south west, I don’t know about the rest of the country. Anyway, thank you for all that you do. Keep up the good work.

Good luck out there. Wherever you may be..

With gratitude and encouragement,
Adam

[Suraya]

Hi Bassa,

Welcome to the site! I say that but always remember that it’s bittersweet, as one would prefer not to be here as that would mean there’s no AVM. But you won’t find a better group of people than here. Everyone is supportive, encouraging, providing insights from their own experiences, which I’ve found invaluable.

I’m really sorry to hear all you’ve been through. Whilst I haven’t experienced all that you have post surgery, I really do understand questioning every decision made, and I think it’s completely normal to do so. Even if your surgery was a year ago, in “AVM time”, there’s no time frame really. It’s what I’ve felt to be the case. It’s not easy to deal with the fact that you felt pressured into certain decisions and whilst one can try and understand where those people come from, it’s still not ok, as they don’t live your life, your experience and ultimately the consequences.

I have a grade 1 AVM in the right temporal lobe. Also told it’s in a non eloquent area. But given what you were told, I probably need to probe even further with my Neuro. So thank you for sharing.

I was told to leave it alone as any form of intervention would cause more harm than good. Unfortunately, I had a rupture in 2013. From what I was told, and from my own research, there doesn’t seem to be a concrete reason as to why the AVM ruptures nor any indicators to perhaps stay away from to prevent it from happening. At that time, I was advised medically to have it surgically removed to prevent another bleed since the risk is higher year on year, but I chose not to. After getting a second opinion, that Neuro advised against it.

I’m in constant pain. All it comes down to is whether it’s manageable or not for that day. However, after the birth of my first child (pregnancy with an AVM is very risky), I found out I had a micro bleed. In fact, micro bleeds have become common for me, having one once to twice a year. But I deal with it at home as it’s more comfortable and I control light and noise. And they can’t do anything different for me in hospital so I was set up with the meds needed to help take the edge off and just await for it to pass.

I think it’s normal to question anything and everything, whether one has received treatment or not. And what you’ve explained as to what you’re currently experiencing sounds scary and confusing, and I’m sorry you’re going through that. Having an AVM, I’ve learned, as have so many in this community, is a very lonely condition to have. No one understands and in my case, I get a lot of judgement. And so I’ve made the choice not to discuss the AVM with anyone in my life nor to provide explanations for why I’m not available. I took the stance that there’s zero respect for what I’m going through because of people’s selfish reasons, and therefore I choose not to keep them informed, maintain a healthy distance and boundaries for my sake so I’m well enough to raise my kids. But on this forum, you’re not alone. And the greatest support I’ve received is on this forum.

I’m not sure if this will help, but perhaps ask your doc the same question a few times and if you get different answers each time, then perhaps seek a second opinion, or get a second opinion either way. I wouldn’t settle for a doc not knowing after they performed the surgery. Whilst they can’t always provide a clear answer as it’s dealing with the brain, they still should know a lot more than “we don’t know”. They should also be assisting you in figuring out why you’re experiencing these things. I’d also ask a lot of questions about what occurred during surgery, and if possible, perhaps to get the surgical notes (not sure what the rules are in your country as universally, I know docs and hospitals don’t like to provide those) and perhaps that can give you some clarity and acceptance.

Please feel free to reach out at any time, even if only to vent. I’m usually on the site at least once a week, but it’s been a while now as I’ve been down and out with a very bad headache for the past 3 weeks.

Wishing you all the best!

Suraya

[Roduez]

Hi Suraya, thank you for posting. I am interested to know a bit more about your micro bleeds. Please could you describe how you knew you had the first one after the birth of your child? Did it show up on a scan? When you say you have one or two a year and then manage them from home, then can you describe the symptoms and what it is you experience?
I have a base level of ‘activity’ from my AVM which I’ve become accustomed to, tinnitus, slight visual field disturbances, flashing lights, dizziness etc, which come and go to varying degrees. Every now and then though there is a bigger ‘wave’ of symptoms which are like the base level but more severe, once including a a headache so unusual and painful that I had to go to hospital worried about a bleed. They gave me a CT scan and didn’t detect one. These increases in ‘activity’ are not what I would call what I would call seizure territory which is on another level and has lead to me surrendering my driving license a couple of times, but it is all related.
Anyway, my basic question is, what do your micro bleeds feel like? How do you know you’re having them? do they feel ‘the same’ as the first one? and what do you do to manage them?

Thank you. I hope today finds you well.

Adam

[Suraya]

Hi Adam,

I’ll try my best to explain what I experience. Just as a footnote, I’ve had migraines and tension headaches since I was a teenager, so I’m able to tell the difference between those headaches and an AVM related one. I also experience visual disturbances, sensitivity to light and sound, tinnitus, as well as some of the other symptoms you mentioned, but sometimes hard to say if it’s a migraine aura or related to the AVM.

The pain I experienced when the AVM ruptured is indescribable. Part of me feels like I may have blocked it out.
With the micro bleed, this is how I know it’s a micro bleed (not a hemorrhage from a rupture)… the pain I have is so severe, almost as if there is a rupture. I have a lot of spasm, tightness and heaviness at the back of my head. Sound and light is intolerable. I can’t sleep because of the pain but probably the worst, I can’t move my head, because if I do, it feels like everything in my head is moving and that pain is worse than the actual micro bleed. Of course, I can’t sleep on one side all the time, so I brace myself to deal with the pain to turn to the other side. It literally feels like everything is moving in my head. The same if I attempt to lift my head off the pillow.

My Neuro said the micro bleed won’t show on a CT scan, only an MRI, but I opted not to do it as I need heavy sedation due to being claustrophobic. But essentially, it’s the pain which is a mild version of a hemorrhage (but nonetheless terrible), the spasm in my neck and a mild fever.
As opposed to going to the ER for a shot for the pain, my doc prescribed the same meds in tablet form to take at home. Bear in mind, none of it takes the pain away. It takes the edge off for a short while, and I just have to let the week pass by. I’m usually in “isolation”, no sound, no light, not even my cell phone nearby. I have someone who attempts to massage my neck, actually, more like just applying pressure and that helps for as long as they can do it and then I get some sleep.

We realized these were micro bleeds because I’d had a few instances of this type of pain which had me out for a week at a time. That’s when I saw my Neuro again and after another angio, that’s when he said they’re micro bleeds. I just find it easier to be at home and take the meds and ride out the pain, as here, if you’re in hospital, you’re under observation and the light and sounds make it unbearable.

The giveaway at the end of the day is not being able to move my head (unless I want to add onto the pain) and the heaviness and in my neck. Also, it’s probably the one time I’m not concerned about anything or anyone as I just want to get through it (except for my kids, and that too, they’ve learned how to accept I have this and I won’t allow any visitors, just see my husband and kids). Once I return to “normal”, it’s a solid 2 weeks for my body to feel normal. I get extreme fatigue (like I’ve been hit by a train and then run over by a bus, all because the body had endured that kind of pain), so whereas it usually takes a half hour to shower and get dressed, it takes me a half hour just to get into the shower.

Whilst there’s no definitive reason as to why micro bleeds occur, I believe mine have been due to some form of emotional stress or trauma. Some examples of what occurred before a micro bleed for me was my daughter spent 12 days in the NICU after she was born, the loss of my gran, loss of my twins, etc.
My doc said it could be the case but of course, no definitive reason. It’s what I feel.

Prior to the micro bleeds I also had some weird symptoms, which according to my Neuro is due to the AVM, such as the sound of the ocean in one ear, smelling cigarette smoke (but nowhere near anyone who’s smoking) and being able to hear in one ear, the blood flowing. I’ve become accustomed to it, but when that happens I do look out to see if a micro bleed will occur or just a very insane type of headache. Sometimes they’ve been warning signs that I’m about to have very bad pain for a few days, but not a micro bleed.

As you said, everything happens in varying degrees, so usually the micro bleed lasts a week, but I was in the midst of one when my gran passed away and I was visiting her every day at the hospital, then the funeral, irrespective of the pain, and that led to the micro bleed lasting 2 weeks.

I’m not sure if I mentioned this, but my last angio had shown no changes to the size of the AVM. Just a few more feeding vessels and venous hypertension (pressure in the brain). Oddly enough, I tend to have low blood pressure but apparently does not play a part in preventing this from happening.

I have headaches 24/7, so I’m just on pain management, deal with the micro bleed when it occurs, but found doing it at home more effective as they can’t do anything different in hospital. I also do “touch therapy”, light neck massages or see a physio every other week to prevent build up of pressure in my neck (that’s the first symptom for me), use a heat bag most of the time, even during a micro bleed, but actually found that an ice pack on the back of my neck more helpful. I haven’t had any seizures (not that I know of), but I will be speaking to my Neuro again to ask about some new things I’ve noticed which I have read could be a form of a seizure (like spacing out and not realizing it and suddenly aware of my surroundings but not sure how much time passed).

I should mention though that the only reason I know it’s a micro bleed and not a hemorrhage, is the difference in the intensity of the pain and when I had the hemorrhage, it felt like an elastic band was around my head.

I hope this helps and please feel free to message or even PM if I can help with any more information. If you’re experiencing pain, perhaps your doc could prescribe pain meds to help you during that time so you don’t have to go through the ordeal of having to go to hospital. But, if you’re not sure, then better to get a scan and be safe and know it’s not a hemorrhage.

Wishing you the best and hope to hear from you again soon!

Sincerely,

Suraya

[ModSupport]

Hey Adam,
My name is Merl from the Modsupport Team, I don’t have an AVM, but another little nasty growing in my head for which I’ve required a few neurosurgeries to manage. And like you I’ve turned up to hospital in agony, had a scan and been sent home. But then, by the same accord, I’ve turned up, had a scan and them keep me in for surgery the following day. As time has gone by I have learnt which signs are a case of ‘Act Now’ and which signs I can manage around. By no means am I 100% correct in my guesstimation, but what I look for now is a progression of symptoms, getting worse.

@Roduez

They gave me a CT scan and didn’t detect one. These increases in ‘activity’ are not what I would call what I would call seizure territory which is on another level and has lead to me surrendering my driving license a couple of times, but it is all related.

I don’t have grand mal (thrashing) nor petite mal (Shakes) seizures, but rather periods where I seem to faze-out. As someone who saw me explained it to me “It’s like the lights were on, but nobody’s home…”. The medicos termed them as ‘pseudo seizures’. My regular doctor trialled me on anti-epilepsy medications, but the ‘episodes’ are so infrequent, trying to gauge the effectiveness of the medications has been more trial and error than finding a treatment. The medicos wanted to take my driver’s license, but I begged them not to and under my pcp’s supervision I’ve been allowed to keep it. PHEW.

None of this is easy. We know it because we’ve lived it too.

Merl from the Modsupport Team

[DickD]

@Roduez

I have a base level of ‘activity’ from my AVM which I’ve become accustomed to, tinnitus, slight visual field disturbances, flashing lights, dizziness etc, which come and go to varying degrees. Every now and then though there is a bigger ‘wave’ of symptoms which are like the base level but more severe, once including a a headache so unusual and painful that I had to go to hospital worried about a bleed.

It is possible that these things are still just migraine or migraine-like things. I read an interesting book called Migraine by Dr Oliver Sacks – the doctor in the 1990 film Awakenings, if you ever saw that. In his book, he described all of the aspects of migraine, of aura, of the relationship (or proximity, I would say) to seizure and what he described as “migraine-like” symptoms, by which he means not true migraine but something similar, provoked by some abnormality in the brain. Since everyone here has an abnormality in their brain, anything that might appear to be migraine might by Sacks’ definition be closer to migraine-like symptoms.

It is always important to get anything significant checked out but I’d say a read of the book might reveal a little more about your symptoms. It’s definitely a medical book but I found it pretty accessible, pretty readable.

Richard