Newish here, looking for advice 🙂

General
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Hi, I’m 35 year old woman from the UK. It’s great being in here and seeing everyone’s stories and the support that’s offered here, thank you.

My story began about 10 years ago I was having a lot of balance problems, dizziness, whole body muscle weakness/numbness (making it hard for me to walk even a step sometimes) visual disturbances and fainting spells.

My doctor at the time seemed to think this sounded like I had suffered a “brain bleed” and I was sent for an MRI, where they found an AVM (I ended up having three MRI scans within the next few months while they confirmed that I had an AVM in my brain, but it did not look as though it had bled, luckily).

During this time my doctor diagnosed me with Chronic Fatigue syndrome.

However, he offered me no explanation about what having an AVM meant for me, any next steps or even what an AVM was (I had to look it up online to find out what the name stood for!).

He never offered to send me to a specialist regarding my AVM. But because I was worried and very much seeking some explanation, I did insist that I really would like to talk to someone about it, please.

He referred me to a specialist appointment, but unknown to me at the time, instead of listing the symptoms I had explained to him, such as vision problems, balance problems and muscle weakness, he had simply put “patient is displaying Chronic Fatigue Symptoms” and he had made it an “emergency appointment”.

I waited 7 months for the appointment but just before I was due to go, I received a letter telling me that the referral had been cancelled because chronic fatigue is not a symptom of a brain AVM and if I am not experiencing symptoms my AVM has probably been present since birth and therefore not a problem.

I regret to say I actually just left it there, despite still feeling very worried about it, if for no other reason than I have never had a proper conversation with a doctor about it or any explanation, so I still felt very in the dark.

When I was shown my MRI by the ladies who did my scans they commented on it being quite large (it looked almost like a large tree root in the back right of my brain, spanning across about a quarter of my brain) and expressed they would probably be seeing a lot of me as others they have had come in for check ups on them regularly.

I have just been very confused about this since then. I just thought “well, nobody is acting like it’s an issue, I’m sure it’s fine”. But occasionally I do still worry.

Is this experience normal? Can some people just have an AVM that is (as the letter described it) not a problem because it’s been there since birth?

I have just made a doctors appointment with a new doctor to try and ask if I please be seen by a specialist, and reaffirm my symptoms are NOT just fatigue. I hope it works out because I would simply just like to have mine explained to me, and know exactly what I’m dealing with :crossed_fingers::crossed_fingers::crossed_fingers:

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Welcome! We certainly are a diverse crew with a lot of different experiences, and you’ll never find two the same! I found out about my AVM when it bleed, and had no idea it was there prior to that, I was 48. I think the vast majority of AVM are congenital, there since birth. Some show themselves in various ways, and lots are never known.

I would agree with you in following up with another Dr., I would! Based on what you describe, I would insist on seeing a specialist. I am no Doc, but I would suggest your AVM may be causing some of your symptoms, and there may be options to follow up. By follow up I mean a variety of treatment or continuing to monitor closely.

Its great you’re here, too bad you were looking for us! Take Care, John.

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Hi Shelbie, I already told a wonderful monitor here that I’d scream if I heard another story of a patient (us) with bad AVM-type symptoms having their experience discounted/minimalized by the docs. (I’m screaming silently now.)
I like that you followed your gut instincts and got the help you needed even though it took longer than it should have. I’m not a doc but your symptoms sound like more than chronic fatigue.
Please continue to follow your instincts and don’t be shy! Best wishes, Greg

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Hi John, thank you for your reply!

It’s lovely to meet you! (However I’m sorry that it’s for this reason).

Sorry to hear about how your AVM presented itself. Really scary but you are so strong getting through that and going on to support others, that’s so commendable.

Thank you for your advice, I totally agree. From what I have read, so many AVM’s are congenital and still need monitoring, at the very least. So, I definitely will take on board what you say and I will be asking the doctor to look at it again!

Kindest regards,

Shelbie

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Hi Greg,

Lovely to meet you and thanks for your reply!

Yes, I really do agree. I came away from being told I had an AVM feeling very confused and not having any idea of what it meant for me.

Over the years this has given me a lot of anxiety and “fear of the unknown”. Which I now feel may have been completely avoidable.

What always struck me as odd was that the doctor expressed he had concerns I had suffered something neurological. Enough to send me for an MRI in the first place. But, on discovering something, decided it wasn’t worth following up at all.

Now that I’m a bit older and wiser I won’t back down as easily and will be trying to get some proper answers. Thank you so much for your advice :slightly_smiling_face:

Kind regards,
Shelbie

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@Shelbie

Welcome to avmsurvivors, though as you say, it is a shame that we find ourselves meeting under these circumstances.

I believe the vast majority of AVMs are congenital; I don’t believe that since you’ve had it forever, it won’t give you trouble. You need someone who knows what they are looking at to tell you what the best course of action is. I’d say you need to get the GP to refer you to neurosurgery to get a neurosurgeon’s view on whether it needs any treatment or is best left alone. While it seems obvious that treatment would be the thing to do, that isn’t always the case: sometimes an AVM can involve parts of the brain that are just that bit too fundamental and operating on it can do you at least as much damage as good, so those kind of AVMs are often recommended to leave alone until something vital needs to be done.

But you need that specialist view of neurosurgery.

The trouble I think you may be suffering from is unfamiliarity: this is a rare disease and GPs and other doctors may not see a patient with this condition through their whole working life. When mine was diagnosed, it could be heard from the outside with a stethoscope. One of the junior doctors I saw asked me very politely if she might have a listen to it, as “I might never see another one”.

“Oh yes, have a listen,” I said.

“Absolutely textbook!” she declared afterwards.

So… see if you can’t get referred to neurosurgery. The reason you might tell the GP is that with an AVM you have an increased risk of a stroke (and it increases with age) so you need the assessment of a neurosurgeon whether treatment (including surgery) is needed.

Let us know how you get on.

Very best wishes,

Richard

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Hi Richard, lovely to meet you too. Thanks so much for your advice.

Wow! I think you have really hit the nail on the head there! Especially as you say, you know from experience not many doctors will encounter our problem.

You have also confirmed my own feelings. I have thought for a long while that my old doctor just simply did not know what to do with the MRI results, he seemed very put on the spot and even when I pressed “what has caused this, what is the course of action?”. He would not answer. I don’t believe in order to cause distress, but because he didn’t know what to say. So sadly, I was left doing my own research online where I did learn about the increased risk of stroke, that increases with time.

All this left me feeling quite scared and hopeless over the years, as whenever I revisited this doctor to try and seek help he bluntly told me “it doesn’t matter what’s causing your illness, what’s important is that you learn to manage your symptoms, may I suggest you see a therapist so you can learn to come to terms with being ill” and sent away with nothing.

I have a new doctor now who has helped me more in one appointment than my old doctor did in years. So I hope to to bring this up with her at my next appointment, and I will be sure to mention my concerns about stroke as you suggest.

Kindest regards,

Shelbie

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What I found was that different GPs approached the problem (= me!) in different ways. I’d say none of them knew what an AVM was. One of them knew nothing, did nothing other than refer me to neurosurgery for any question. A different one knew nothing but was sufficiently inspired by this odd patient that I’m sure she researched somewhat and was determined to learn something from dealing with me. It was she who finally got me a date for an embolisation as we could both tell that the area on the back of my head where my AVM was was getting bigger over time. (Mine was a DAVF and I think these can develop at a different rate than regular AVMs).

Newer GP sounds good. Let us know how you get on!

Very best wishes,

Richard

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Thanks Richard! I’m glad you found a doctor who took it upon herself to research and help. I hope my new doctor will be the same! I will most definitely keep everyone posted and thank you again for replying to me. Im so grateful to have found this community :slightly_smiling_face:

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Hi! I reiterate what has already been said, ypu definitely need to see a neurosurgeon and be properly assessed especially with all your symptoms. My AVM was on my cerebellum and was extensive but they looked at my age and accessibility. I was told an angiogram was the gold standard ( I was seen at addenbrookes following a bleed) and had one before they made decisions and after surgery. They decided to perform a craniotomy to remove mine as it was on the surface but it has left me with dizziness, poor balance and a tremor all of which are very slowly improving - the AVM has gone. You are still young so you don’t want your AVM to rupture causing problems. Hope you get some answers.

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Shelbie, You are quite welcome. I’m not on the “expertise” crew here. So what I do is say I truly care and share my AVM/craniotomies/seizures/meds and emotional/mental effects. The latter has really tied me in knots for a long time. This is a good place for me to relate that shameful/vulnerable stuff because it’s safe, free and I’d guess 75% of the people here can relate on some level. You seem like you have a good head on your shoulders so if you do start feeling lousy/scared/lost… I care and so do others here. Be well, Greg

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As Richard said, bummer we meet under these circumstances.

I’ll just touch on fatigue & AVM part - since, I’m kinda late to the thread. For me, post procedure is where it became very evident that they seem to have a bit to do with one another. The blood flow changes apparently add to the fatigue - at least it’s how it went for me.

I still get random tired spells, before the procedure - well, I never paid attention

But, completely like Richard mentioned. AVM’s are very rare & complex. Not all can be cured or even operated on.

I hope you find the medical help & advice from someone in the medical field. Us here, we just have real world experiences & they are all different.