Hello everyone, new to the community

I just got diagnosed 3 days ago with AVM. I have had an 18 years history of severe migraines. Whenever I asked for an MRI, the doctors would look at me and say I was fine, not needed. I turned 50 and ended up in urgent care with a severe migraine, Nonstop vomiting, unable to speak and difficulty walking. She sent me for a neuro consult and I got my MRI and my diagnosis. Still have another CT, so I won’t know for another 30 days what is happening. It’s very interesting to read others stories. Its amazing how with the diagnosis all my symptoms clicked into place. Also got a new dagnosis of glaucoma. Not sure if it is related to AVM. Any tips I need to know going forward? My AVM is on the left temporalis fossa.

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Welcome ! There are alot of stories to read that’s for sure. Try not to get too stressed out we are all dealing with this thing called an AVM it will get easier. Wishing you the best of luck!

Thanks a bunch…:bouquet:

Welcome to the site! I have a left temporal AVM, on the inside of the left temporal, that has been treated via gamma knife November 2016. Mine was found May 2016 when it decided to bleed and I learned what an AVM was and that I had one. Sounds like yours has perhaps been having some influence for a while, but fortunate to not have ruptured. Hopefully the road over the next little while provides some options, it is often a fairly slow process for many of us. Again welcome! John

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Thanks for your reassuring words. Makes me feel comforted, because I somehow thought that because mine had not ruptured, it would be quick and easier.

Hi! Welcome to our international family!

My AVM is in my dura mater, over my occipital lobe so I can’t share symptoms with you but I can tell you that diagnosis (certainly in the UK) takes a looong time. If you were urgent/acute, they’d have kept you in and sorted you out straight away.

I do think your glaucoma and AVM might be related (I’m not a doctor but) glaucoma is basically damage to your optic nerve through over-pressurisation in your eyeball. One of the tests doctors do from time to time is to check for intracranial pressure (i.e. pressure in your brain) by looking in your eyes and/or taking your iris response, so I think pressure impacting on your vision could emanate from the eyeball, or from the surrounding brain. What I’m suggesting is that (logically to me, anyway) if you get the uneven pressures that are being driven by your AVM sorted, you might see a reduction in pressure on your optic nerve, which would be a good thing. Two birds, one stone. However, I’m not a doctor, so could be completely wrong.

It’s great to have you with us!

Richard

I’m not a doctor either, but I have been on RX eye drops for 20 days and I feel more clear headed. Also, another question. My neurologist is young. He didn’t give me a lot of info about AVM except that it is a tangle, decreases blood flow. He said I needed a CT scan with contrast so the doctor could figure out where to go in for the embolization and what the blood flow looks like. I got a copy of my MRI from the hospital and then I googled everything. I didn’t know what AVM was, so I didn’t have any questions. He did say he would refer my case to another doctor who would do the procedure. Should he have told me more than a few sentences and what should I have asked him? He did say no more ibuprofin or aspirin due to increase chance of bleeding. I don’t see him for another month.

It’s an interesting problem of what to tell a patient, I think. I am sure that part of the tendency for lack of information is that to tell a patient everything about some conditions can frighten people and I think it is much better not to frighten people. So I am sure doctors go easy on how much they share with our best of health in mind. It can be a very frightening condition. The fact we are all here is testament to either having a bleed in the first place, or having a diagnosis without a bleed and having done plenty of searching online and probably frightened ourselves. It’s not good for you :wink:

I’ll tell you a bit more about an AVM. It is basically a tangle but it connects an artery directly to a vein. This is a bit like the water supply to a house. The supply side is very high pressure; the drainage side is very low pressure. In your body, especially your head, you don’t want high pressure injection of blood in your veins for a long time because the increased pressure can be one of the things that can lead to a rupture of the vessel. Veins are low pressure vessels, not designed for high pressure. In other words, you have an increased stroke risk. So, it is worth finding out if it can be fixed.

One of the other aspects of pressure coming in the wrong place is that it can put pressure on tissues surrounding the AVM, hence migraines, etc. And it can even get to the point sometimes where you have the same pressure on your venous side as you have on your arterial side, which means the blood doesn’t actually flow past the tissues it is supposed to. That means you get no oxygenation to that tissue.

However, unless you’re having a bleed, most doctors, it seems, are not in a rush. I guess any damage is generally long term. It took me 6 months from first going to my primary to getting a full diagnosis and a talk through my MRI. It took another 6 months before I had an operation. So, don’t panic. This is not going to happen quickly.

I hope sharing bare stuff like this is ok. It shouldn’t be my role to scare you(!) The main thing I would say is be patient. Ask of your doctor, or here, anything you like. And if you get any sudden or significant symptoms, go straight to the doctor or ER, as appropriate. There is nothing to say anything untoward will happen but it is better that you now know you have a condition – and know what to do to look after yourself – than to just carry on not knowing.

Does that make sense?

There is no value in worrying about it. But there is value in knowing.

Hope this helps. I’m concerned I’m blasting information at you and undoing what your doc is trying to do by not telling you too much…

Very best wishes

Richard

Joo,

It is also not clear whether these things are congenital (formed in the womb) or inherited (some conditions which bring AVMs with them are inherited) or acquired. More than likely, you’ve had an AVM all your life, so it is not likely to be a new, incipient, thing.

Hope this all help rather than hinders.

Very best wishes,

Richard

Hi there @govanjoo,

Welcome to our wonderful community :raising_hand_woman:

Damn that is a long journey to getting diagnosed. I got the whole “its stress, nothing to be concerned about” thing when I complained about my migraines too :roll_eyes: so glad you finally have that long awaited affirmation that you weren’t overthinking things and have that “aha” moment when everything adds up. Obviously not glad you got diagnosed with an AVM but glad you did before a rupture and can finally seek potential treatment options :raised_hands:

I’ve done some searching around online, potentially the glaucoma is connected but I can’t seem to find any relevant articles/sites that connect the two. Mostly it looks like this location usually has no symptoms if there are then: migraines, hearing issues or facial sensitivity changes. Then again every AVM is unique in size, exact location. Would be great if you could have both treated together as Richard said!

In terms of what to expect going forward - id expect you will most likely be sent for an angiogram after your CT scan. Unless they go for combined angiogram followed by treatment if they are already confident of what treatment is best for you.

These scans will then be analysed in depth by a team of specialists which specialise in the differant treatment options for AVMs: craniotomy, embolisation (the gluing procedure you described), Gamma knife or sometimes cyberknife surgery. They will then decide the best option/s for treatment. They may access whether the risks outweigh the benefits of any treatment and offer to monitor your AVM instead. You will then have a meeting and discuss the options, be able to ask questions and have your case explained to you indepth.

Remember that they will not put a treatment as an option for you if they beleived the risks outweighed the benefits and they will be upfront about risks. These specialists train for many years rigerously to be able to be put in this position to decide what they believe is best action to take and treat you. Regardless you will have the final say.

For example for me, craniotomy was never an option. I was told bluntly by two neurosurgeons specialised in Neurovascular conditions that I will 100% come out of a craniotomy with total right visual loss in both eyes not even considering high risk of other deficits - I have a deep set left occipital lobe AVM (sight centre of the brain). Embolisation was the only option offered to me.

If you feel unsure about your treatment options offered: there is always also the option to get more than one opinion, from neurosurgeons or neuro-radiologists who are experienced in treating AVMs.

For now, I would try to leave the worrying to the specialists - easier said than done I know. For me when I was diagnosed back in may 2017 - my main two responses were to get as much information as possible reading about others experiences to prepare and inform myself and to nag nag nag at the hospital to move my appointments forward. For some looking online and reading others experiences with AVMs in the same location helped calm them, others see “ignorance as bliss” and chose not to go into things in too much depth.

I would however regardless of which approach helps you cope best - prepare and write down questions for meetings with your consultant and for when you have the meeting discussing your treatment options. Here is a useful link with suggestions of questions to ask:

Other than that, I’d say just keep very transparent about any changes in symptoms or concerns with your consultant and doc. As much as you can be rest assured that they do have your best interests at heart - it is important sometimes for us AVMers to self-advocate and push to get our dates pushed forward. Until they fully assess our unruptured AVM, they may not be so urgent to get things moving forward too quickly. But you know deep down how you feel.

I did a lot of pushing to get my angiogram moved forward. Once my angiogram had finally been done, then they finally saw what all my fuss was about. I had my first treatment scheduled two months following the angio and this is on NHS so very quick considering. They had internal meetings then two national meetings across the UK to discuss my incredibly rare case and find the best neuro-radiologist willing to take on my case within this time. So they do act quickly and seriously if they realise your case is a concern, but sometimes we do have to push for them to reach that point.

The only other advice I have is: try to keep low stress, keep your blood pressure down. I have found another useful link with advice on this:

I would add to this, even if it’s embarassing, straining is also one to avoid, so try to avoid constipation if possible.

Hope this helps and that I havent overdone it!

Please do keep us informed on how you get on. Never hesitate to reach out for support, ask questions or for experiences - we are all here to help :smile: If you do struggle with this all, I do highly recommend Cognitive Behavioural Therapy which helped me tonnes.

Best wishes,

Corrine

Welcome to the community. I don’t have experience with brain AVMs, but I know you will find solace among family on this site (and plenty of advice). So grateful for your persistence. May the stories here inspire you to keep on keeping on. Xo

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Wow, Corrine, you are so knowledgeable. I won’t go into my story at this point…I have already discussed it in my first post on here. I am wondering if you know the difference between an aneurysm and an AVM? I had a craniotomy on Nov. 28th and have so many questions about my “after surgery” issues and guess that I will have to address this with the aneurysm group. It would be good to hear if you can explain the difference for me. Thank you so much ahead of time!

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Where are you located? United States, which city? Be sure to ask your Doctors about the Aruba Study and if it is relevant to your particular situation. Good luck!

Pchefdi,

I think the difference is that an aneurysm is an arterial defect, where the walls of the artery are weak, extending/bulging under the arterial blood pressure and there is a risk of rupture. No veins are involved.

An AVM is an arterio-venous (i.e. both artery and veins involved) malformation (defect) between an artery, directly into a vein. The problem with that is that veins are low pressure vessels and not designed for arterial pressure. Thus, the same sort of rupture risk is present.

In correctly-formed vascular systems, blood flows through arteries into smaller and smaller vessels (a bit like a river flowing backwards from the sea into smaller and smaller rivers, brooks and streams) finally flowing into a “capillary bed” which is a collection of very fine blood vessels with walls that are thin enough for oxygen and nutrients to pass through the vessel walls. From the capillaries, the blood flows into a tiny vein, and on into larger veins, like streams flowing normally into rivers and rivers joining as they flow back to the sea / back to the heart.

With an AVM, the capillary bed is missing and blood flows at high pressure into the vein, giving no benefit to the tissue it passes and potentially reducing the pressure that pushes the blood to reach the capillary beds further along that artery, perhaps leading to lower oxygenation of those further capillary beds. Equally, blood flowing at high pressure into a low pressure vein is inclined to flow both ways --up stream and downstream – as it is higher pressure than the normal flow of blood back to the heart. If the reverse pressure is very high, the pulse of blood on both sides (arterial and venous) of upstream capillaries can be the same, so you end up with no flow through those capillaries and necrosis (dying off) of the tissues that depend on the capillary flow. That reverse flow is known as reflux or retrograde flow.

… that’s my understanding of it, anyway. Hope it makes sense.

Richard

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Good explaination Richard !!!

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Welcome, I can’t advise on your specific AVM as mine was in a different area of the brain.

I can advise to question the doctors and get second opinions if you can. At your own expense, like me, if possible. Read my profile for the details.

Do not hesitate to reach out here for comfort and advice. I wish this site existed during my AVM adventure. We’re thousands across the globe here to help you.

Remember there is a wonderful and active life after AVM. And, I always advise, get into your mind that there is no other option, none, but getting better.

Finally, it took nearly 18 months for complete recovery from the surgery addressing my AVM. It’s long, slow, boring and frustrating. Just be patient. You’ll get there.

Sending love and healing waves wherever you are.

Bill

Hi there pchefdi,

Sorry for such a late response, I had a pretty intense hospital appointment on wednesday and then was pretty exhausted yesterday so was MIA.

@DickD Thankyou for answering Pchefdi’s question for me, couldn’t have explained it any better to be honest! :smiley:

I wanted to add I may have made a false assumption about the board meeting post angiogram in my earlier comment… I know this is a standard procedure in the UK and some USA states but cant say for sure if it is in your state. Please forgive me if I am wrong :sweat_smile:

Let me know if you have any other questions or welcome to PM me if you would like someone to talk to or anything :slight_smile:

Best of wishes,

Corrine

Wow Richard I cannot believe the knowledge you have about this! Since mine is an aneurysm situation I am wondering if I should address the issue on the aneurysm site. Here is my situation in case somebody knows: my aneurysm was discovered by accident by a dear dear friend of mine who is an ENT doc. I’m a 72 year old female and I have been a walker for 40 years. Thank God I’ve always been very healthy. I walked 4 miles a day in about an hour and five minutes. I did that for many years 5 to 6 days a week. Last March I noticed when I was walking that I wasn’t walking in a straight line. When I would walk with my daughter finally she said to me, mom I love you but you keep running into me. Then to add to that I noticed that my hearing in my left ear was progressively getting worse and worse. I called my good friend who is the ENT doc and he asked if I had a recent MRI. I told him I had one from three years ago that was taken because I’ve been getting migraines for over 25 years. I was seeing a neurologist for my migraines. He ordered an MRI to make sure I didn’t have a tumor. He said the MRI came back just fine. I told my ENT friend that was the only MRI that I had. He asked to see it and when he looked at it he discovered an aneurysm that nobody else had caught. So apparently I was walking around with that for three years. Now granted it was relatively small on the MRI from three years ago. He told me the area where I had the aneurysm was pressing against my nerves for balance and hearing! I was overjoyed to find out there was an actual reason for what was going on with me. My friend ordered another MRI and it came back that I now had a large aneurysm. Being a doctor himself, he did the research for me and found an amazing neurologist in the Minneapolis area. The neurologist recommended the coil method. I went through that surgery and after 2 1/2 hours they realized that wasn’t going to work because the aneurysm was so deep in my left side. They stopped the surgery. I was devastated when I came out of the sedation. But they explained to me that it would’ve been more dangerous to continue. It was then decided that I needed a full craniotomy. I had that on November 28. So thankfully they were able to cut off the blood supply to my large aneurysm. It has been three months since my surgery and I’ve been experiencing what I thought was lightheadedness so they ordered another MRI. Thankfully that came back showing that the aneurysm has clotted. I am now completely deaf in my left ear and my balance is still “off”. Is there anyone out there that has had a similar situation? My neurologist and my ENT friend have both said they think there’s a good possibility I could get some of my hearing back and my balance issues will improve. I would sincerely love to hear from anybody that could address this issue. Obviously I am incredibly thankful that the aneurysm was found and know it could’ve been so much worse. As I said I just want to see if anyone else has experienced this type of thing. Thank you so much for any help I can get!!

I’ve just been hanging around here too long / I have a bit of an analytical mind, so my way of coping is to learn about it all.

Do you have an AVM or “just” an aneurysm? (I say “just” in quotes because they are both equal – I am not suggesting any superiority of of over the other) because Ben’s Friends also have a Brain Aneurysm Support group, which you might be interested in, or even more interested in than an AVM group if you only have aneurysms.

It looks like they are having a “webinar” next week, too.

Hope this is useful,

Richard