AVM - suggestions gratefully received

Good morning all,

I’m a 68 year old with a few ailments but mainly reasonably healthy. On May 17th 2023 I suffered a partial seizure out of the blue, for around 25 - 30 minutes I couldn’t speak properly and, according to my husband who was there at the time, I was making words up. All I remember of the event was going to put something in the freezer and having this overwhelming feeling of deja-vu, so strong that it scared me. The following day I saw my GP who immediately phoned the hospital and got me an appointment at the TIA clinic, as this was suspected as the cause of the seizure. To cut a long story short, that day I had a CT scan, EEG and blood tests, followed by an MRI the following week which confirmed an AVM in the left temporal lobe. I’ve since had another CT scan with contrast and my results were sent to Addenbrookes for the MDT there. I have a telephone appointment on 23rd of this month with one of the neurosurgeons there and I wanted to see if anyone has advice on what questions I should ask, or anything really. I have no idea of the size of the AVM and sometimes I feel very much in the dark. Do we have any say in possible treatment options or is it already decided by the doctors? It feels a bit better even just putting it on here and getting this frustration off my chest.
Thanks for reading.

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Hi - I am sorry to hear what you have gone through - it is really scary.

I don’t know much about brain AVM (mine are in my foot and eyes) - but I have heard people talk about gamma knife as a treatment option - might be worth a google?

Good luck and let us know how it goes!

Hi Writerchick, thanks for reading my story and for your reply. I must admit I don’t really know much about the Gamma Knife treatment but I did read a little about it. I think I should do some more research into treatments before my appointment. Thanks for your input and best wishes for your health.

Rose,

Welcome!

Can I say that you’ve turned up in much the same way that about half of brain AVM patients turn up here, which is having had a brain AVM diagnosis that just frightens the pants off you. I was in exactly your situation 7 years ago and it is very scary.

I’ll give you some basics about an AVM and treatment and then my usual incitement is that you can ask us anything you need.

An AVM is a malformation of the blood vessels such that where a capillary bed might normally be found between your artery and a vein, there’s a more direct, high-flow connection. The trouble that this brings in a brain AVM is that veins are low pressure vessels, not designed for the high pressure blood and that presence of a high pressure flow can cause bulging of the vein and the risk of rupture. Consequently, you’d want to have an operation to remove the erroneous flow and reduce your risk back to that of an average 69-year-old.

There are three main ways in which this is done. And there’s a possibility that actually it is better not to do any of them. I’ll explain.

The option that most of us think of first is “brain surgery”: a craniotomy. Take the lid off, find the problem and clip off the connection that shouldn’t be there. This is a very successful approach but sounds very scary and is clearly quite an assault on your head.

The second option is catheter embolisation. This involves inserting a very fine tube into your femoral artery or radial artery, navigating it to the relevant place under x-ray and injecting glue or other “embolic material” into the join, thus taking it out of commission. I’ve had an embolisation. The thing with an embolisation is that you can only pass such a fine tube into some of the larger vessels. If you were to want to poke it into some of the tinier vessels, it would fill the whole artery during the procedure and effectively give you an ischaemic stroke. So it has that limitation. It is still more impactful than you’d believe and it carries risks associated with blobbing the glue in the wrong place, or tearing an artery wall during the navigation.

The third approach is radiotherapy, such as gamma knife radiotherapy. This is to zap the offending area with radiotherapy, causing the walls of the vessel to scar and close up. Radiotherapy is very useful for those areas where the vessels are too small to access via embolisation or where attacking via a craniotomy would require working past lots of good brain to get to the work area.

Sometimes the AVM is seated in such a difficult-to-access, critical-to-you area that actually leaving it until you’ve had a bleed (and you need rescuing seriously) is better than trying the pre-emptive strike. Having surgery in dangerous places can leave you with deficits that you wouldn’t want.

I should say that each of the approaches carries different (or common) risks and it is that balance of risk v benefit that somehow you have to decide on when the doc explains what they can see and what they propose as your possible routes forwards.

However, there are far more of us here who have had one of the three modes of treatment than there are those for whom “best left alone” is the option, so at this point it is good to be positive about what the docs might offer you.

I can honestly tell you that this sudden twist in the road frightens us all and I am no less easily frightened than you, yet I got through my embolisation nicely and I’m living a normal life, 7 years later. Not all of the road ahead is easy but we have people here who can attest to getting through it, just like you.

Ask anything you like.

Richard

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The best I can do is give you a short history of what happened to me. I’m 66, close to you in age, but my AVM problems began when I was 29 with seizures. At 32, I had a craniotomy that got most of the problem, followed by gamma knife to get rid of the last of the AVM. Good news, is that I worked as a chemist for thirty years after the surgery.

Thank you for the welcome and the extremely useful information Dick. I understand the ‘best left alone’ option but it’s just the thought of having the knowledge that I have a time bomb in my head which makes me want rid of it. I will out myself in the hands of the experts at Addenbrookes and follow whatever advice they give. I’m happy that you received a successful conclusion and hope you continue with good health.

Take care, Rose

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Hi Armand, thank you for sharing your experience with me, it’s nice to know that you’ve had a successful career after your surgery and gamma knife treatment. All the best for the future, Rose

Hello Rose,

I cannot add anymore to Dick’s description of the various procedures, but I have had two Gamma Knife procedures now. All the possible procedures were explained to me but I was told that Gamma Knife would be the option because of the size and location of the AVM in my brain. I was also told that it may take 2 procedures because the AVM was large. I am now at the stage that it has shrunk to a size that further treatment may not be necessary - I will find out in December. I am really replying because I totally understand the ‘ticking time bomb’ comment. It is a very frightening thought, but I got through that early stage of diagnosis by remembering that I had had that time bomb unknowingly since birth and that nothing too bad had happened during that time (I was diagnosed a 50) - I am now 59. Listen to your consultant - they will advise you on the best procedure of your AVM.

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Hi Rose, I cannot add anything to what Dick said either (in fact I think I will copy it to use when I need to explain what an AVM is). My AVM was also discovered when I has middle aged at 64 when I had a seizure. Since I had it for 64 years without anything happening before, the Doctors recommended to monitor it but not perform any other procedure. To make s long story short, I had two more seizures over a two year period and a bleed when I was 67. The doctors recommended radiation treatment to hopefully shrink the AVM and remove the risk. It usually takes 3 years to determine if it is successful. My 3 year anniversary is coming up in December and though the AVM is less than half the size, it has not gone away. I will be back in your position in December deciding what to do next. Because os my age, they probably will not recommend cutting it out (that was an option last time, but not recommended), but will look at another round of radiation, embolism or doing nothing. If you read the many post on here, you will see the many different ways AVM have affected people’s lives and the many different options for treatment. My only real restrictions are the amount of weight can lift, the exercises I can do and of course the potential of another bleed/stroke as long as that AVM is hanging around.

Listen to all of your options. Ask them about the risks/benefits or each procedure. Feel free to take your test results and send them to other neurosurgeons to get a second, third or more opinions. Then take all of that information and recommendations and choose the best path for you.

Best of luck. We are all pulling for you here.

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Hi Dill,

Thank you for your response and for telling me your experiences of having an AVM and having the ‘ticking time bomb’ feeling. Your comment about having had the AVM since birth makes total sense and I keep reminding myself of that too. I have just over a week to go now until I (hopefully) get some plan for the way forward.

Take care and look after yourself.

Hi TSparky,

Thank you for responding to my post. As yet I have not been told anything about my AVM other than where it is, so I don’t know what size it is, I will remember to ask at my appointment if I am not told then. I’m sorry to hear you had more seizures and a bleed after your diagnosis, this is what really worries me if they say they will just monitor the situation. Only 8 days to go until my appointment and I hope that it will give me some indication of the road ahead, I think that the not knowing so far has made me more nervous than the actual AVM. I will post again when I have more information on how my appointment went.

Take care.

@RoseP

When I had my first appointment with neurosurgery, I met the consultant interventional radiologist who had been assigned to me. While they had already had their interdisciplinary meeting to decide what they felt was the best way forward for me, this was the first time I had met any of the team and no surprise that I met the guy who does the embolisation procedures! This was the recommended route forwards and meant I could ask any questions of the expert.

He showed me my MRI scan and explained which part was the AVM (or in my case dural arteriovenous fistula “DAVF”). He then explained his proposal to do an embolisation procedure. If I’m honest, I found him a little unusual to talk to and he was a bit grumpy about my questions. In fact, I felt his “bedside manner” was a bit unhelpful. However, I reasoned with myself that in fact, if I was going to trust messing around with the mechanics in my brain to someone, it probably wasn’t the guy who was full of himself, nor was it the guy who could talk a good game. No, it was the engineer. It was the guy who struggled to talk about much other than what he was going to do and what the risks and benefits were but came across as confident in the mechanics.

Equally in my case, the appearance of the DAVF on the MRI was tiny. It was simply a shunt, a straight connect from an artery into my right transverse sinus and all you could see was a white dot, which was a slice through the vein, showing high flow fluid where all of the other vessels visible were a duller grey colour or invisible. The size was not so much the key for mine, simply the volume of blood being shifted each second into the wrong place.

The determination of how to treat is often influenced by the size, however, the location of your AVM and how deep the venous drainage goes.

I hope you have a good visit later in the week and remember, there are many of us who have been in the same situation and while it is perfectly scary, we’ve got through it. In fact, if I can get through some of this, I’d say anyone can.

Very best wishes,

Richard

Well put Richard, great summary of the many potential paths including my own path which is no intervention recommended at this time. It’s hard knowing I have a nasty nest of malformed vessels that can’t be fixed unfortunately without creating some trouble due to location and nature of my 3AVM’s. The journey of twist and turns over the years has been a nightmare at times, but like nightmares you wake up and shake off the bad feelings and get on with the act of living. At this stage I am happy to report I am leading a full life after finally discovering my AVM in 2021. My issues can be tracked back decades and understanding the source of my problem was both a relief and super scary. This summer I experience a stroke like event but 4 months later I am almost as good as new. Some days I wish I had intervention options but then other days I feel grateful to get to carry on leading my life as I have always done. The thing that brings me most comfort is that I was born this way and at 54 I have had many many many more days of no issues than days that my AVM’s have caused trouble, so I keep on keeping on and hope for the best.

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Only a few more hours until my telephone appointment with the Neurosurgeon, I wish it was going to be a face to face but maybe the fact that it’s by phone means they don’t want to take any action at this point. My mind is full of ‘what ifs’ at the moment so I don’t suppose I’ll get much sleep tonight. I’m writing a list of questions to ask and hopefully by this time tomorrow I will know what’s going to happen. Thanks for all your input.

Regards,

RoseP

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Firstly I wish you all a happy 2024 & I hope you all had a peaceful Christmas. It’s now been 8 months since my diagnosis and I’m still waiting to hear what options I will be offered. Since my last post I have had a cerebral angiogram at Addenbrookes and a further appointment in Norwich with my Neurology consultant, who had no idea that I’d had the angiogram. When I expressed my surprise he told me that it’s because there are 2 different health authorities involved, not exactly inspiring to be honest. At the moment I am continuing with Lamotrigine and on 19th February I have an appointment at the Neurosurgery clinic at Addenbrookes. I really hope this will be to discuss the various options so I can finally stop wondering. I’ll let you know how things stand after my appointment.

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My experience was a little similar. Leicestershire doesn’t have a neurosurgery service but Nottinghamshire does, so I was referred to Nottingham. It took less time for me to be seen than it has for you: I had my first diagnosis of “AVM” from an ENT consultant in Leicester in August 2016, MRI a month later, report on the MRI a further month later. Referral to Nottingham took another month and I saw a consultant interventional radiologist in the neurosurgery practice in Nottingham in November 2016.

I’m hoping, like you, that that meeting is what you’re about to go for. They had had the multidisciplinary team meeting to discuss my scan and decided my route forwards would be to have a catheter embolisation procedure to glue up the AVM, hence getting to talk to the interventional radiologist. He was able to talk me through the plan. I talked about this above.

We agreed on the plan and I basically went onto his elective surgery list. He estimated that that would be in the new year.

I finally got to theatre at the beginning of April 2017. I can’t tell you that it was an easy wait: I felt less well over those several months and I spent several occasions ringing his neurosurgery specialist nurses to explain my symptoms, or talking to my GP. I didn’t have a neurologist sitting between me and the neurosurgery team: if they are too busy to follow through with their patients or to know when you’ve had a scan etc, then it isn’t helping is it?! Hopefully once you’ve had the appointment in February, you’ll get contact info for the neurosurgery team and can work more directly with them. (They do tend to be just as busy, mind!)

Very best wishes,

Richard

Thanks for your input Richard, I too hope that after my appointment I will have access to the neurosurgery team, I had a strange thing happen last week and it would have been good to be able to get advice about the experience but I’ll have to ask about it when I go to the clinic. I know it might be quite a long time before any treatment may take place, assuming that is the decision, and I’ll be happy just knowing I will be on a list.

Take care & best wishes

RoseP

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If you ever get anything significant, go to A&E. I even went to QMC A&E at one point during waiting, which may be preferable to Leicester.

I know what the waiting is like!

Very best wishes,

Richard

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Well, on Monday I had my appointment at the Neurosurgery clinic at Addenbrookes with Mathew Guilfoyle. He showed me the pictures from the angiogram I had in November, so I finally got to see my AVM. Embolisation wasn’t discussed as an option so he told me that left radiosurgery or craniotomy, he told me the various risks which accompanied each option and said that he favoured having the radiosurgery done in Sheffield because due to my age and other medical issues it would be slightly less risky. I explained that I just want this thing gone totally and would personally prefer a Craniotomy. We ended the consultation with him saying he will speak with the MDT and will call me in a couple of weeks to confirm that both options are suitable and to find out what I have decided to go ahead with. At this point in time I am still dithering a bit, I think I’m concerned my husband will not be very good at dealing with me if I end up with long term issues as a result of a Craniotomy. I never thought it would be so difficult to choose.

I think it is very difficult to choose. For me, the MDT happened before I met the doc (they may have already discussed you in MDT before you had your meeting this week but he’s repeating it to see how the team feel about your preferences). I was only offered embolization and fortunately it was the option I was most comfortable with in my own mind, so the choosing was easy.

It gets difficult again when you approach surgery. I was worried about problems from the embolization: the doc said of the risks on my consent form “5% chance of something nasty happening, including death”! which is pretty alarming but you have to conclude for yourself whether the surgery is important to have and that the benefits outweigh the risks.

None of this is an easy path. That’s why we are all here.

Good luck! Let us know how you get on.

Very best wishes,

Richard

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