Hi my name is Alexis and I’m 35 from Scotland.
I’ve been told today by my neurologist that I have an avm in the left side of my brain but I may also have one on the right side too.
I attended hospital 2 months ago with speech difficulties, basic ct scan was clear but I was sent for an out patient ct angiogram. This showed "malformation of the vessels in the left side of brain " and I’m being sent for an MRangiogram too.
Neurologist called me today and confirmed that I have an avm on the left side and suspected avm on right side too. I’ve to be started on anti seizure meds too as I’ve now had several episodes of speech difficulties with dropping left eye.
I’m terrified to be honest. My MR angiogram is in 8 days and it’s to determine size etc of left side avm but also to find out what is going on in the right side. I don’t know what to expect in terms of treatment, terrified of surgery although if it is the best option then of course I will take it!
So that’s my story. Since finding out about the vessel malformation I have read up online (not always the best thing to do!) Everything pointed towards an avm but I didn’t believe it would actually be this, I believed google was pointing me to the worst diagnosis only.
Has anyone else been diagnosed with 2 avm’s? I don’t know what to expect…thanks in advance.
Well my story wasn’t multiple AVMs but mine wasn’t discovered my AVM ruptured. You have luck that yours were discovered before they could rupture. My rupture is what led to multiple surgeries 5 to be exact. The bleed led to multiple blood clots in my brain. Your doctors will probably do a lot of scans on you to see what type of surgery and what the best doctors are. I had more than one type of surgery and surgeons. Hope the best for you and if any questions just ask.
Welcome to the site! The main thing is that you found the AVM/s before they’ve done any significant damage… as John says the key is to avoid a bleed and many people wake up in hospital to be told after the event that they’ve had an AVM and it’s bled.
For those of us who discover it beforehand, it is very scary but it is undoubtedly better to find it. My own experience, and I hope many of the other folk who arrived here scared, is that by sharing your story with us and we sharing our stories with you, you’ll get to understand, feel more OK with what might need to be done.
My rules:
Don’t worry about stuff until you need to.
Ask us about anything you need.
The idea of neurovascular surgery is undoubtedly scary but there are at least 3 main ways of sorting out an AVM.
a craniotomy. Taking the lid off. I’ve got this in the scary box but there are some great stories here from people who’ve gone through that.
an embolisation. This is basically a very extreme form of keyhole surgery. I’ve done this and got through it fine. I’m a complete wuss and it was fine. Again, lots of experience here of people going through that.
stereotactic radiation, such as “gamma knife”. i.e. zapping it from the outside.
It is also fair to say that it is best for some people to leave their AVMs alone. So… be careful what you read about / start to worry about the scary end of the scale. There are multiple ways to deal with it, most not scary.
It is possible to have multiple AVMs and actually in multiple organs. AVMs are not in themselves hereditary but there is a correlation between an inherited condition and AVMs, especially multiple AVMs, so if members of your immediate family have any symptoms as well, that could be indicated. This is all very rare, so unlikely to be something you’d need to think about.
I think I’ve thrown too much information at you for a “welcome” but we are all here to listen, answer any questions you have, and share our experience.
Just go through the diagnostic steps with the doc and he/she’ll tell you what it means. We can help you get some of the information into your mind over the coming weeks so it all doesn’t hit you in one go in the hospital room. You can go in, knowing a bit.
Too much info, I know. Back to rule 1. Don’t worry about it before you know what you’ve got.
I really appreciate your replies!
You’re both right, I need to stop worrying so much although I’m a worrier by nature! I was definitely burying my head in the sand until I was able to speak to the neurologist today, it was my husband who was more stressed!
I definitely realise how lucky I am that this has been picked up before any potential ruptures or bleeds (hope you didn’t find me insensitive). I am a nurse and I started my career in a unit for young people with acquired disabilities through brain tumour / stroke / haemorrhage so I have absolutely seen how devastating it can be. Had never heard of an avm before though.
I will definitely have a good read through the threads. What do you think the chances are that they will ‘do nothing’? I’ve been reading up on potential rupturing and given my age the chances seem high. (Sorry for being scared, I’m such a wimp).
Difficult to say (and not our position to say). It will depend on the benefit of intervening versus the risk of intervening and possibly whether the management of your symptoms via drugs is effective.
We do have people here who are on the “do nothing” list. Some by choice and some because doing what’s needed is actually too dangerous.
I’m sure those around us worry even more. My wife was the same.
It’s good to have you here. We’re with you all the way.
I’ll be counting down the days until my next scan, and until I can speak to my specialist again.
Those who have unruptured avms, did you find the diagnosis and investigation process slow? Feels like this process between first known symptoms and now has been very slow.
Have just read through the thread you linked to plus Part 1…slow indeed!!
Did you have the feeling you were walking round with an imposter in your head? That’s how I feel…it’s a horrible thought I’m hoping my medical insurance through work may speed things up a bit.
Welcome and great you’re here! A lot of info here so far, hope it helps. The researching is natural, I’m pretty sure most do it, I didn’t;t have the will power not to that’s for sure. The waiting was difficult for me as well. I did have to recover from my bleed before they would do too much, that set me back about six weeks until the scans showed the clots had cleared. I was 6 months to the day from hospital admittance, which I don’t remember to gamma knife, which I do remember! Hopefully your next angio will answer bunch of questions, which it should. Take Care!
Hi Alexis, I too live in Scotland (Glasgow area) and had an AVM in the right temporal lobe of the brain, I had 2 seizures in my lifetime (I was 37 when my AVM was found) these 2 seizures happened 10 years apart and my MRI was clear, but I was never sent for an angiogram till I had my haemorrhage, My wife found me on the bathroom floor, Anyway to cut my long story short I woke up in hospital and had no idea how I had gotten there or why I was there, I’d just had brain surgery (Craniotomy) and was in hospital for 2 weeks for recovery. My time there was spent sleeping loads as this I found was the best way to recover. At this time my AVM still was not treated !, I did some research like you on the internet and most of it was not good, but when I found here almost all the stories were positive and ended well !, I was told I had to have another surgery to remove the AVM in the Southern General Hospital (Now the Queen Elizabeth University Hospital) This is the news I didn’t want, I mean I thought what’s the chances of 1 person going through 2 open brain surgeries within 7 months and surviving or being “ok” (without deficits) , I thought my life was over and as a father and husband etc I was worried. But I came to terms that I could not change this, And then started the long and hard wait on the NHS for my date, During that time at nights when I was alone were the hardest, But I kept shaking these negative thoughts off and kept telling myself I would be fine, “I’ll be fine” until eventually that’s all I heard along with the song “Three little birds” Every little things going to be alright … And you know what ? … I was fine, 2nd surgery there were complications, But nothing the surgeon couldn’t handle and I was home in a week and then back to work 8 weeks later, Life is back to normal now (except for headaches but I can live with them) , My story I want to share to give you hope and to let you know that these things happen even in Scotland and there are success stories , There are others from Scotland here who are in the same situation as me. I’m thankful that I can now give back to the community that has helped me get through a tough time, But tell you what you will be a stronger person after this and the staff that look after you are some of the best in the world your going to be in good hands. Stress will not help you, come to terms with the fact that you cannot change this and you WILL be fine. Take care
Alexis, Just seen you have medical, this means you should be able to skip the NHS queues which are the worst part of the journey !, This is fantastic news and even if you cant because of some loop whole of other reason , the same surgeons and staff treat you in both facilities you will be in good hands.
Thanks for your reply. I too am in the Glasgow area (1st nursing post mentioned above was in the Physical Disabilities Rehabilitation Unit PDRU at The Southern General).
I was in the QEUH at the start of May 17 with left eye drooping, confusion and speech difficulties. Diagnosed with migraine. Since then I’ve had 5-10 further episodes and yesterday diagnosed with seizures. Neurologist has asked me to hand driving license in, which is understandable.
I have to attend Dr O’Leary at Rosshall next week (funnily enough I worked alongside him in the PDRU) for further investigation. Nhs neurologist Dr Selverajah (?) is urging me to also attend my upcoming nhs mr.angiogram as he’s not 100% confident the proper investigations will be carried out. He has said it specific wording must be used in the mr request otherwise they may not be looking on the right place for the right thing. This hasn’t filled me with confidence tbh!
Lots of success stories on here, a lot of stories of bleeds too which I have not had. I think for me it’s the not knowing which is eating me up. I know I have an avm on the left side and potentially one on the right side too. I don’t know size or exact location, or if I’ll be actively treated. I know I’ll have my answers soon enough though but this period of limbo is horrible.
When doing my nurse training I focused my final assignment on patients anxieties and my research found that one of the worst times for the individual was the time waiting for diagnosis…I can relate!
I’m struggling to think of anything else at the moment, but also trying to shake off the feeling of ‘feeling sorry for myself’. I know I’m lucky it hasn’t ruptured or bled and I keep telling myself that.
Hi Alexis, I know what you mean, Trust me its the waiting part that’s hardest !, I had my bleed on Dec 31st 2013 and didn’t have my removal till July 7th 2014, So 7 months wait and during that time I was thinking what if it happens again, The bleed is way worse than the surgery, Surgery you have a trained professional working on you, Bleed and you have to hope that someone finds you in time !. I think that Dr J Selvarajah, was with my surgeon when they gave me the good news that I was AVM Free, and was looking after me during recovery (Not 100% sure). My wife had a very similar experience to you in that she was admitted to the PDRU with migraine paralysis on her left side, they did all the tests and I though due to the symptoms it would be a bleed or AVM type related issue but they said migraine and gave her meds and asked her to take it more easy. Its rubbish to have any illness, But as you said you are shaking it off, As a former staff in the PDRU you know better than most how good these specialist are , your in good hands and will be fine. The surgeon that took care of my bleed (1st Craniotomy was Miss P Littelchild and she passed me to Mr E J St George who is a specialist in AVM’s) Take care and please let us know how it goes for your scan
All’s good thanks, Since my surgeries, Life’s been pretty good to be honest, I moved house and my wife had another baby this year (totally unexpected, but our first girl !) so all is going well. Sure some days I’m grumpy etc but that’s the headaches since my bleed, Have to think that I’m lucky to be so well after what I’ve been through. But that’s life and you just have to play the cards your dealt , I just tell myself it always could be worse and don’t worry about anything that I cant change . Those two names are both surgeons and may not deal with other types of treatments, I’m not sure.
Before my private appointment I received a letter from nhs consultant confirming the left sided avm and vessels involved. I took this letter to consultation with private healthcare. He read the letter and confirmed it suggested a small left sided avm and booked me in for an mri scan.
In the meantime I continued have almost daily episodes of left eye dropping and speech difficulties, lasting from 5-30 minutes. Attended nhs out patient appointment and had an episode in waiting room, which progressed to shaking limbs. Nhs arranged to admit me when next available bed came up.
Attended for private mri scan, still waiting for results.
I was admitted into nhs neuro ward on Thursday. Examination showed slight weakness in right arm and leg and slightly reduced response to pin prick tests on right side. Mri and mra scans came back clear…no avm! I had an eeg (20 minutes) and awaiting results, have been let home on weekend pass.
I’m obviously absolutely delighted that I don’t have an avm as I felt the future was so uncertain, plus my husband was driving me insane with his worrying (but I let him off, he’s allowed to worry!!).
So now I’m confused! Ct angiogram suggested a left sided avm and detailed the vessels involved, and also suggested there may be a right sided avm. But mri and mra are clear. Obviously I’m still waiting for the results of the private mri scan but I don’t know where to go from here.
I know this is probably the wrong place to be asking now but has anyone been on a similar situation? I know something is causing these episodes but don’t know what. Part of me is scared that I may in fact have an avm but recent tests have missed it…I mean it was misdiagnosed initially so it’s possible??
Any advice would be appreciated as I’m confused, thanks in advance.
I’m hoping my medical insurance through work may speed things up a bit.
, your in good hands and will be fine. The surgeon that took care of my bleed (1st Craniotomy was Miss P Littelchild and she passed me to Mr E J St George who is a specialist in AVM’s) Take care and please let us know how it goes for your scan