AVM Survivors Network

Newly diagnosed

Hi, I was diagnosed with a large cerebellum avm yesterday and I am feeling very scared about what the future holds, probably due to lack of knowledge on this condition. I am 41 and with my partner, Rob, We have 2 young children aged 5 and 8 and live in Derby. About 4 weeks ago I was diagnosed with a condition called hfs due to a fairly severe facial twitch which started in August this year. I was sent for an MRI as there was concern about the rate of progression of this twitch which can take many years to get to my stage. I think the neurologists suspected that something was likely to be causing the hfs which is why I was sent for the MRI but I just assumed it was normal procedure, I have since found out that many hfs sufferers don’t get an MRI done for many years. I tried to think positively about the outcome as I had no news for over 2 weeks (no news is good news?) but I got called in yesterday and the results were given, which hit myself and my partner hard, as it would with anyone. The avm itself is putting pressure on my facial nerve hence the twitch. We were sent away only with basic information on this condition and our only choice has been to try to research it ourselves on the internet. This can be a bad thing as some sites are very negative but others show positivity too. We have been told that a case conference would be taking place today at QMC in nottingham where my case would be discussed and treatment options discussed. Surgery I have been told is unlikely due to the size and location of the avm but radio surgery in Sheffield May be an option?? So far we have heard nothing and we both feel so frustrated and alone with this. Can anyone advise us?
Many thanks

Welcome to the group.

I was in same boat as you 3 years ago…but the only suggestion I have is try taking it as it comes. I had gk treatment done in Sheffield for a frontal lobe avm and now after 3 years doing almost fine.

Good luck and happy to answer any questions

Hi there, I truly appreciate how you must be feeling right now. I have also been there with my daughter when she suffered a bleed from her avm two years ago. Surgery was out of the question for her because of the avm location. She had gamma knife radiation 19 months ago and she is also doing fine. All I can say is keep positive, hard I know, you will read many scary and negative things but my daughter is living proof of the positive.

All the best to you, I am also happy to answer any questions you may have.

Hi Williamsmummy4. Welcome to the site! It sounds as if your case is fairly similar to mine. I live in Milton Keynes, am married and have two children (10 and 6). I also have a large AVM of the Cerebellum. I started getting severe headaches at 14 (I am 41 now) and after a CT scan the doctors diagnosed Recurrent Hydrocephalus (water on the brain). Fast forward 15 years and I was offered an MRI scan at John Radcliffe Hospital in Oxford. This showed up the AVM. Like yours it is not suitable for surgery due to location. And I have also been offered Gamma Knife at Sheffield. I would need at least 3 embolisations first though to shrink the AVM. My AVM is unruptured and doesn't cause many problems in my everyday life at the moment. So I elected not to have treatment for fear of making things worse for myself. However I am monitored and have an MRI every couple of years. If things change I'll consider treatment then. I'm really sorry to hear about the way you found out about your AVM and the shock it caused. This sort of thing is very difficult to hear and think about. But please be assured that it isn't necessarily a death sentence and whether you seek treatment or not is a personal thing depending on the risk and likelihood of success. Good luck!

Hi lulu, many thanks for your reply. Until I know the outcome of the case conference held yesterday I feel I am in limbo not knowing which way to turn or even if treatment is an option but I am trying to stay positive. My partner, Rob, on the other hand has taken it harder than I thought he would. I always thought he was such a strong person but that must have been a front. I think he is struggling to comprehend what is happening and he wants action now, not next week or next month! He has even ring the hospital today for feedback on the case conference but they have not heard yet so he hit a dead end with that. Hoping we might at least get to talk to someone soon!

Hi, thanks for your reply, What was the outcome of your gk treatment? was it obliterated in full or part? I think gk may be my only hope of treatment but it is so long to wait to know if it has worked or not (2-3 years I think I read)

Here's hoping that he hears something positive soon then. My husband is rather more laid-back about it. His approach is to not really talk about it and sometimes I wish he would. It is after all a big thing in my life, although having known about it for a long time I have rather learned to accept my AVM as part of me. I think there is a massive tendency to rush out and attempt to treat a condition like this as soon as you find out about it. But from what I hear not all treatment ends in total obliteration of the AVM. So you just need to be sure that if you proceed with treatment you accept that. Try to reassure Rob that you are still the same person and chances are you were born with this so nothing has changed. I'll keep my fingers crossed for you. x

We wont know anything until they give her an angiogram in March 2016. Unfortunately we have to wait 3 years. It is a long time to wait but we are half way there. We try not to think about it too much and she leads a normal life. I seem to remember the specialist saying if it didnt work they would consider giving her another dose, and if it still didnt work then consider operating as it has to go because of the risk of further bleeds. I can't actually think that far ahead, just hoping and praying it will be good news when she has the angiogram.

Hi williamsmummy4. Am also in limbo, like yourself, waiting. Im 48 and my children are much older. I live in Hertfordshire. I found out 10 days ago that I have an AVM on the top of my spine. Was told by GP who gave me very little info but suggested I wait and speak to my neurologist (I have been having bad headaches, nausea, dizziness for past 7 mths). The neurologist phoned me at home the same night to tell me they had found something, but didn't want to go into detail. I have now been referred to the National Hospital in London. so am waiting to even find any treatment options. I rang them yesterday to try and hurry this along - but no joy. I completely understand that 'limbo' feeling, my husband is being great but like yours want this sorted yesterday. All my info has been gained from the internet and most doesn't make for fun reading. I have to say that this site comes with much more of a positive aspect and although I have only posted once, the day I heard I have an AVM, so many people replied I was overwhelmed. Hang in there and good luck

If you don’t mind me asking, how long from diagnosis to Gk treatment for Mollie?

Hi lulu, I found out by pestering the hospital today that the main neurosurgeon (who I have not met) has sent out a letter to the neurologist and radiologist. Although we don’t know the content of this letter we are assuming it is requesting a catheter angiogram. Not sure if the quickness of this letter is good or bad news. I think we are looking for signs in everything at the moment. Unfortunately my avm is causing significant facial spasms which is why I had an MRI to start with. Not sure if I can live with that as it affects me everyday but they are going to offer me Botox from December as originally planned before the avm was found. One thing I don’t understand is that avms don’t grow, but why would these spasms suddenly start in the last 6 months if something hadn’t changed. It is now putting pressure on the facial nerve so that suggests it has grown?

Hi Becky, lack of contact is so very frustrating so we decided that we weren’t going to sit back and wait so we have probably become the patients from hell this week. My partner rang the neurology unit 3 times this week with no response so I rang my GP yesterday and she agreed to make a call herself. Whilst waiting for this rob also rang the secretary of the neurosurgeon involved in my case and she was lovely. She even returned his call with more info. It turns out that the neurosurgeon has been discussing my case as we were originally told and he dictated a letter on Friday morning which has now been sent out. Although she couldn’t be specific about the content of this letter she did tell him that it included an appointment within it and that radiology are involved ( we think that this means an angiogram has been requested) . My GP also learnt that I will be contacted next week and a consultation with the neurosurgeon will happen as soon as possible so sometimes pestering can get you news, of course now we wonder if quick movement is bad news but you can’t win can you? I do think though that pestering can be beneficial and might highlight your case or show that things are happening even if they don’t bother to tell you!

Give it a try if you need to know what is happening, what have you got to lose!
Keep in touch

Please ask away! She had the bleed in the April, and they didn't discover the avm until the following October (6 months later). then had the gamma the following March

Hi Caroline, oh yes - I equally have taken on the patient from hell role but as yet it is still getting me know where at all. I AGAIN have spoken to my neurologists secretary and she 'hopefully' is on a mission to clarify who/where I'm being seen next. My next mission is to clarify something someone wrote on the main site here. I read that the NHS only fund treatment for brain AVM's. Mine is at the top of my spine C1/C2 vertebra.

Hope you hear something soon

Hi Becky, I had no idea that there may be a funding issue with spinal avms. Everything I had read so far showed that brain and spinal avms were treated equally as important but now I have googled this there may be some issues as you say. I do hope that this isnt the case for you as everyone with this condition even if it's not in the brain or spine deserves treatment, if it can be done. I have had a letter through now confirming i have a consultation next week with the neurosurgeon involved in my case. Will keep you posted.

William'smummy, can you get copies of your scans, choose some doctors from the Recommended list on the Uk group, and send off scans yourself for additional opinions? That may be what it takes to get your best treatment plan.

I feel for you. Others here have posted really good advice and comment.

My experience is that stress and worry didn't help me, ranting at hospital staff can make you feel as if something is happening and keeps you in their minds, but doesn't always help you! My wife was very impatient for answers, at the time I did find this stressful, after all, my AVM's had been years in the making.

Things take time to process and the neuro's do meet regularly with other specialists and consults, but treatments what ever form they take can have detrimental effects. AVM's do grow in size in some and not in others - they need to be sure if 'going in' is the best way to proceed.

I had/have 3 AVM's in spine and they still affect me, the embolisation/angiogram was quick for one but the other 2 were inaccessible by angiogram or madness for open surgery, cyberknife focused stereotactic radiation was used. Cyber knife was done in less that 1 1/2 hours but is slow for results as I'm still waiting for improvement - if I ever get any... it could be years before I can balance standing. But for me, I was advised that doing nothing would eventually result in me in a wheel chair, when, was unknown, but that treating the AVM's with high dosage radiation also had a risk too. I took the chance and hope for the best.

Ask questions of all staff you meet, track records, experience, outcomes... It seems like years ago now for me and it seems that a great deal more is know about AVM's in the UK. My neurosurgeon initially wasn't too interested as a surgeon - he had no solution for me, but as a team leader - they have had quite a few more cases since mine and so their knowledge expands... Also - ask what treatment is actually available in your area on NHS, for me, Cyber knife was refused for spinal work as it 'wasn't on the NHS England list' where brain work was. Go figure that decision.

Ask what is available elsewhere and is it funded, if not, try another hospital area or write to your MP. That may take time, but I had to wait 4 months to find out I'd never get it on NHS. I considered that 4 months wasted, my neuroradiologist and oncologist cyberknife specialist were gobsmacked...

Wish you well - remember, it's an emotional rollercoaster you're both on and you and your partner have a great deal to go through yet... good luck

AVMs respond to hormonal changes and other triggers and can grow and progress quickly.

Hi wozza, thanks for the advice, I am learning fast that this is a slow process, its just hard not being in the loop with these discussion at the moment. Hopefully I will learn more when I meet the neurosurgeons next week. I hope you are ok and making good progress

Hello Williamsmummy4 and welcome to this forum. I'm sorry to hear about your current situation and the discovery of your brain AVM. I totally understand how you must be feeling with all these thoughts running through your mind. Im sure your doctor has your best interests in mind and will help you the best they can. Everything will seem like it's running at a snails pace but the discovery of the AVM by the hospital/doctors will set everything in motion. I know it's hard to keep positive but by having your family and friends around you will help.

I didn't know I have a left frontal AVM which hemmoraged causing a massive stroke at the same time. This was back in May 2011 and had my brain surgery on my sons 17th birthday. I was only 39 when it happened having my wife/family beside me really helped. Please feel free to read more about my story and will try to answer any questions you may have to the best of my ability. I still take one day at a time, having bad days but some fantastic ones which I will treasure for the rest of my life.

THIS isn't the end of the road and your lifestyle, please remember that. There are people who can help you, this has already started by finding out you have a AVM. The NHS have fantastic neurological teams and I'm living proof the system does work. Please don't get me wrong, AVM's are rare every year that goes by hospitals/surgeon's/doctors will learn something new. Us as AVM survivors can only help discover new treatments and techniques to treat our conditions.

My experiences over the last three/four years has taught me that our brains/bodies learn and adapt, yes it can be tough, but any form of help from any professional team within the system can only benefit. I hope this helps in some way Williamsmummy4, Darren. :)