AVM discovery

I recently discovered that I had an AVM in the Left temporarl-parietal area after having a seizure and therefore being referred to a neurologist, he organised an MRI which showed the AVM.

I subsequently have a meeting with the neurosurgeon in an NHS hospital in a few weeks. Just wanted advice on what usually happens and next steps from this point?

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Welcome to the board,

Well, try to take it easy & work with your neurosurgeon team

AVM’s are a tricky thing, all of them are a little different. Mine ruptured & I had a brain bleed - then it started giving me severe pressures that put me into severe seizures - it was embolized & I am ok -

There are multiple procedures available, depending on your case - they will discuss your options.

Like I said, they are all different. What fixed mine, doesn’t mean will apply to others - but, it is a possibility

When it comes to AVM’s, there are 3 types of surgeries/procedures that are used radiation, embolization & a craniotomy - don’t get too worried yet, much more information is needed to know what treatment(s) will be right for you. They can use one, or all 3 - I got very lucky, very very lucky - so far, at least.

But, like I said right off in the beginning. Try your best to take it easy - at least you didn’t have a bleed.

Look through this forum, it’s full of information. But, don’t focus on anything just yet - most likely shortly down the road you’re neuro team will be getting a angiogram < this is what truly shows what’s going on in there

All the good luck - post back any questions you may have, there is a ton of knowledge on this board

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Hi MIke

Many thanks for the reply and yes you’re right there is tonnes of info on here with lots of people with different stories.

Do you know if an AVM will be treated regardless or will some doctors deem it only necessary to treat medication. My neurologist has prescribed me with Lamotrigine which I am taking but said the likelihood will be one of the 3 treatments you have listed.

i’m also unsure on lifestyle changes, I haven’t seen a huge amount on drinking. I’m more of a social drinker and my doctor said just be sensible and drink in moderation, seems sound advice! I’m also a keen footballer and want to get back into it, again my doctor just said don’t head the ball and just don’t over do it but recommended keeping fit etc. not sure what your/anyone’s experience with this is.

What is the recovery like after having an AVM removed, is it usually quite a long recovery period?

Thanks again for your support

Alex

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All questions to ask your neuro team. Recovery for some is very different per case basis - in some cases, yes meds are an option.

But, every case is so different

Mine ruptured/hemorrhaged before I even knew it was officially there. After that, well - it’s been a heck of a ride.

But, same as me - relax a bit on the drinking & take it “easy” was my recommendation after my embolizarion

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Welcome Alex, too bad you’re here but happy to have ya’! How’s that for an odd greeting! I had an AVM in my left temporal, I found in 2016 when it ruptured and I spent some time in the hospital. I ultimately had gamma knife as it was deep and surgery presented more risk of complication. It is now obliterated. Like Mike says, make sure you keep track of your questions for your neuro. I dd a lot of research with Dr. Google, but certainly didn’t let my searches trump my Drs. 12 year of University and 20 of experience! It did allow me to ask a lot of important decisions in the appointments. Take Care, John

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AGEJ - Hi, and sorry to hear about your diagnosis. As others have said, there are three treatment routes and a fourth option - medical management - which basically means observation. This is usually only used when the AVM is too difficult to approach in any other way. Removal, embolisation or Gamma Knife are used wherever possible to end the risk of bleeding, which is your biggest risk. I had a bleed and have had Gamma Knife as my AVM is inaccessible to surgery. But on the bleeding point, the risk of an I ruptured AVM bleeding is low according to the studies, typically cited as 1% per year cumulative. Even if it has bled once before that becomes 4-5%. So don’t think of this as a ‘ticking time bomb’, rather think of it as a 99% chance of NO bleed. That’s just my advice to deal with the psychological challenge of your diagnosis. Secondly, not all bleeds are life changing. It’s a serious thing to have a brain haemorrhage but in my case I have been very lucky indeed and have no serious problems despite what my neuro called a ‘moderately sporting bleed’. I am waiting for the gamma knife to work it’s magic. On the one hand I was keen for surgery, which ends your bleed risk if successful, but on the other hand although I have to wait up to 5 years for GK to work, I’m glad I avoided surgery, and I don’t let the AVM rule my life. There is a lot of fear early on after diagnosis and having a seizure must have been scary - I’ve not had one thankfully - but give yourself time to adjust and take your time making your treatment decision. The risks of surgery are all up front, so make an informed choice including second opinions. No good neurosurgeon will mind you taking other opinions, indeed they should encourage it. Finally on exercise my AVM bled while I was running. I took 4 months out but am back running now. My neuro feels that exercise is very positive for general health and there is no science linking exercise to risk of AVM rupture. A study of 400 women in China with AVMs while giving birth naturally showed no increased risk of bleeding. That said, they still give you laxative twice each day in the ICU! :joy:…I feel that my bleed was contributed to by dehydration and pushing myself excessively hard on my run that day. Do what feels ok, and don’t push yourself. I wish you every peace and success in your AVM journey and am happy to share any experience of my own.
Ionny

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Alex,

Hi! I’m up in Leicestershire and I had an AVM in my dura mater back in 2017.

Other than the MRI, it is likely that the doc will want to do an “angiogram” which is basically lying on an x-ray table and having “contrast material” injected through an entry point (usually at the top of your leg) to map out the various vessels in your brain and see exactly what is connected to what. It’s a whole day in hospital but it is the “gold standard” for working out exactly what you’ve got going on.

Once they have that information (or possibly based on the MRI) there will be a multidisciplinary meeting of the neurosurgeon, an interventional radiologist and a radiotherapist to determine which course of treatment that the guys have set out is best for you.

Depending on what the docs can see, they may refer you urgently for an operation or it may be that they are more relaxed about what’s going on. I had my initial diagnosis in Aug 2016, MRI in the September, first meeting with the neurosurgery team in November and had to wait until April for an embolisation.

In my case, I think my DAVF was progressing rather quickly, so by the time I got to surgery, I needed it. However, I’m not sure that other types of AVM develop very quickly. If at any point you have a significant change in your symptoms, it is worth going straight to A&E.

Meanwhile, the advice I got when I got worried one week and went to A&E was to cut out anything like smoking, drinking, coffee/caffeine, chocolate or anything that might put my blood pressure up significantly. That’s about the main self-help thing you can do. I used to drink coffee pretty regularly. Cutting that out did improve how my head felt, though with mine developing quickly, the benefits only seemed to last for a month.

I hope this is useful. You are not alone!

Best wishes,

Richard

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As Dick says, sensible life adjustments to avoid stress and hypertension are worthwhile. I also gave up coffee, but I do still have a glass of wine and enjoy chocolate. Strangely I used to enjoy a gin and tonic but have not had one since my bleed (18 months). A few of my tastes and habits have changed, possibly as a result of the bleed. My BP is very good and I bought a BP monitor and take it regularly, so I know what my ‘normal’ is and keep an eye on it. One of the neurosurgeons I consulted with prior to my treatment told me that exercise is ok because blood vessels dilate, so even when he’s cycling hard at higher heart rates his BP is managed. But he said stress is the opposite, blood vessels constrict and he can see the veins on his hand pulsating…think he mentioned arguing with his wife :zipper_mouth_face:…anyway he made a good point, and all of my neuros have advised me to avoid stress. I’ve also been advised that a drink is fine, and actually whatever ‘feels right’ is probably ok. Obviously that advice is for my situation and all of our situations vary (for example I have bled but have not had seizures).

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Every case is so different,

I have done my fair share of research on these, now - and, boy - sweet, lucky me - I’m the one who got a brain bleed - I suppose I fell into the 1%

And, from the conversations with my neurosurgical team - I’ve had multiples over the years. I guess that explains their jaw dropped look when I came back nearly at 100% - after being rendered speechless, along with other things for days prior to my embolization procedure.

But, where I am mentally now - I wouldn’t change a thing

Oh man, what a year

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Thanks everyone, very helpful responses.

I’m just hoping the 2nd Lockdown won’t jeopardise my first hospital appointment!

A

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Welcome to the family AGEJ135 and sorry to hear about your current situation, but please remember there is light at the end of the tunnel… Generally you will discuss with your doctors what the best option is moving forward as far as how they want to address the AVM… please keep us posted here as many members can help you with questions you may have and emotional support… like the user above said we are different and what applied to my AVM may not apply to you but again rest assured there is light at the end of the tunnel… God bless!

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I hope so, too. If it is any consolation, I’m doing an MRI on Friday not related to AVM and that is going ahead.

Hope all goes well nonetheless Rich… God bless!

Adrian, thank you!

So the encouraging thing for Alex is that my MRI did go ahead. I’ve got a telephone consultation to go through the MRI this Friday. At least, I’ve got a telephone consultation. I assume it is to talk through the MRI.

None of this is AVM-related, just other stuff that a good proportion of us go through as we get a bit older!

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Alex,

Any update on your appointments? I’ve got an operation on Monday for a biopsy to be carried out. So key services like ruling out cancer are still going on.

Sending you best wishes,

Richard

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Hi,

My appointment is on Monday and apparently still going ahead! Will keep you posted

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Jolly good! That’s both of us busy on Monday! All the best!

Richard

Any questions before tomorrow, or have we set you up ok?

All good thanks! It’s been changed to a telephone appointment which is a shame but better than being cancelled.

Will keep you updated. Apart from the obvious ones, any particular questions I should be asking?

The most important thing is that you get anything that you’re bothered about answered. So the questions you have are the most important.

When I had my first meeting, I think the main useful thing I came away with was a formal diagnosis and the telephone numbers for the neuroradiology specialist nurses, so any further questions I could ring and talk to them and they were very approachable and supportive. The department that looked after me was neuroradiology rather than neurosurgery but I guess neurosurgery will have similar resources if you end up referred there.

I had a telephone consultation for my current issue a couple of Fridays ago and it was just fine. Actually less fuss than having to hike over to the hospital.

Have a good day tomorrow :+1:t3:

Richard