Hi all, I’ve been recommended this website from another as I’m struggling to find anyone or any support in the UK for my condition. I was recently diagnosed with a spinal AVM in the T9-T10 section of my back. As this is knew my knowledge on this is limited, as my doctors arnt much help for me right now I’m looking for answers elsewhere. If anyone has any information or knows about these any help would be much appreciated. Kindest regards. Kirsty
Hi Kirsty, just to let you know you are rare but not alone. I have a spinal AVM (T12 ish), diagnosed back in 1992, so some of my experience is very dated but I have had more recent experience of treatment (March 2016). I am happy to share my experiences with you, the treatments I have received and what I understand about spinal AVMs in general etc.. I would offer the caveat that spinal AVMs are very rare and each one is unique in the way they are put together, so what applies for me won’t necessarily apply for you and vice versa.
I could probably waffle on so to spare you that was there something specific you wanted to ask? Alternatively I am happy to answer your questions by email or over the phone one evening (I’ll let the person at the SIA who flagged this post to see if it can be organised, I’ll post back here what they tell me.)
Hi Neil. Thank you for taking the time to reply, it is so nice to hear from someone else in the similar situation with it being so rare.
My main questions are about treatment, as I haven’t been able to find many sites that are for UK sufferers a lot of the information I have read will obviously be very different to my situation just from being in the UK alone.
The last time I went to my doctor was after my first and only (so far) angiogram, I got given four options from which I have to decide which one I wanted to happen, the first of these options was to leave it alone and monitor it – the downside of this being the worse I get the less I will get back after having any treatment (although I have read some who make a full recovery) The second and third are both similar, one being another angiogram but whilst asleep this time to try and glue some sections off and the other being radio surgery. I don’t have much knowledge on any of these apart from what I have researched myself. The only thing I know is my AVM is complex and will be hard to get at. The last option was surgery (which seems to be what most people have done outside the UK) but I was told it would be my absolute last option.
I have also read a lot about it rupturing if left then obviously being in a worse situation, with you saying you have recent experience of treatment, was this due to you leaving it? Or something more complex.
Quite a lot to answer and for me to baffle on about my apologies, I’m just trying to get any answers and information I can before I make any decision which will affect the rest of my life.
Thank you again. Kirsty
I can certainly give you some insight into some of the options you’ve been given. I would reiterate that this is just the experience of one person (me) any decisions you make need to be based on primarily on that given by medical experts, with experience of treating spinal AVMs, that you have confidence in.
My AVM was only diagnosed after a bleed in 1992, the immediate consequences of which were paralysis. Diagnosis was via MRI and an angiogram. I received surgery (a laminectomy) within a week; this removed the clot and some of the accessible blood vessels. After a few days I was able to move my legs and after 2 months of rehab I could walk with sticks.
After a year or 2 of improvement things gradually started to get worse, the only treatment available was wait and see, if I bled again it would mean another laminectomy. Fortunately I didn’t bleed (but I was relying on elbow crutches), the neurosurgeon who I was under referred me for a new treatment option – embolization (latter 90’s). I travelled to Oxford where I was treated (Radcliffe Infirmary I think), the neuro radiologist/surgeon was unable to perform the embolization this first time (they couldn’t navigate close enough) but said to come back 12 months later, which I did. On this second attempt they were able to reduce the AVM by embolizing parts they could reach. I didn’t deteriorate any further but neither did I notice any recovery, not that any was promised.
A few years later I was told everything was stable and for over a decade it was. Then in 2013 I experienced another bleed out of the blue, again suffering paralysis. After a bit of a battle I got transferred to the hospital that had treated me in ’92. I received another angiogram which confirmed the diagnosis. The neurosurgery team were honest about their lack of confidence in their abilities to perform an embolization, however the neuro radiologist referred me to Southampton Hospital where I think he had either worked with or been taught by the their neuro radiologist. They had a look (angiogram) and also came to the conclusion that the arrangement of blood vessels was too complex for them to treat. I would add that prior to the procedure the radiologist said that I was only the fourth or fifth Spinal AVM case he would have treated by embolization. I was informed that it was unlikely there was anyone else that could treat me by embolization in the UK.
By now some strength was returning even though the AVM/bleed hadn’t been treated I was (and still am) using a wheelchair. However the site of the bleed was still there and held the potential to bleed again. However the neuro radiologists I had seen now referred me to a world expert in Spinal AVMs France, who after reviewing the images agreed to treat me. Funding by NHS England, the application being made by the first Neuro Radiologist, rather than funding via your GP or the hospital that treated you originally (you have to fund your own travel). I have since travelled to Paris on 3 occasions and received 2 further embolization treatments, there is a tiny bit of the AVM left which they couldn’t get close enough to on my most recent visit.
The reason that it isn’t done in one hit is that certain blood vessels in the AVM are just too tiny, however after their neighbours are sealed off the redistribution of blood flow can cause them to dilate, 12 months later (for example) they may well have become accessible to embolization. So in total I have experienced 6 angiograms where the intent was to perform an embolization if possible and 3 of these where this actually happened. I think this is indicative of the cautious and conservative nature of those who have treated me; I have never perceived that there has been any unnecessary risk taking and I have never experienced a neurological set back as a result of treatment (though I have had the odd minor complication from angiograms e.g. at the site of entry into the artery).
From a my perspective embolization is little different from an angiogram, you would be under a general and if they perform an embolization you would stay a few more days in hospital for monitoring than you would if it is “just” an angiogram. My first few angiograms were while I was awake but as I developed trouble lying still due to involuntary movements in my legs I have for a long time had my angiograms under a general, so for me there is no obvious difference other than the length of time in hospital.
I can’t comment on radio surgery. I realise I haven’t written much about the laminectomy; it was a long time ago and my experience is more limited. I can elaborate if that would be helpful. I am also cautious that my experiences are biased towards the treatment as opposed to wait and see; that is due to the situations I found myself in. You could say that for the decade before my most recent bleed that is effectively what I was doing without realising it.
I would certainly suggest you explore the options available with the people likely to deliver the treatments so that they can properly inform you of the risks/benefits of treatment vs the wait and see approach. Don’t discount your own perspective and fears when having this conversation; you may find the idea of wait and see would leave you with too much uncertainty for you to get on with what you would like to do in life, alternatively it may be the treatments that seem uncertain in their benefits and you would like to stick with things as they are until such a time (that might not come) where the risk/benefit ratio has shifted for some reason.
I would have liked the certainty of knowing the AVM had been eliminated 100%, but I am satisfied that as much as possible has been done to reduce the risk of a further bleed while managing the risks inherent with the procedures themselves. I would also say that I have in the past looked at various sites and it appears that people have been treated 100%, everyone is different. Like I said at that start this is just my experience, treatment (or not) options and outcomes will differ from person to person. I would also say that reading up on the topic on the internet, it seems there are 4 different types of spinal AVM and the likely prognosis varies by type (and therefore the more suitable course of action).
I hope that above isn’t information overload (be honest it is, isn’t it). I know that you must have a lot to think about, but I hope the above helps fill in some of the blanks. If there is anything you would like further information on please just ask.
Hi everyone, hope you are all doing ok. I’m a newbie and have just received second opinion from another specialist. I’ve now been told twice that I have spinal AVM/AVF in L3-L6. Apart from being told there is no surgical option and can only manage symptoms I’m struggling to process this. I’m at the symptom stage of severe back pain, numbness in legs and feet, reduced control of bladder and bowel, frequent headaches and severe pain when walking. I’m a mum of 3 with two of them under the age of 5 and I’m terrified of what will happen. I’ve googled for info but only managed to find positive stories so far and stories of partial embolization which reduced symptoms. I know I’m not in danger but with my mobility severely effected I am becoming down at lack of info. Please give some reassurance if you can
I am sorry to hear about your situation. I don’t think that it is acceptable for the specialists to say treatment isn’t an option because the case is too complicated/unfamiliar to them; the specialist should refer you on. I appreciate that “surgery” isn’t an option unless you have a complete deficit, however there are other treatment options as you have identified (I can only share my experience on embolization and surgery).
Apologies if I suggest anything that you have already done, but I would suggest that you ask to be referred to a neuro radiologist if you haven’t already been so. If you have and the neuro radiologist is unhappy to progress with an embolization then I would politely request if your case can be referred to someone with more experience in spinal AVMs. Spinal AVMs are rare and therefore neuro radiologists don’t necessarily have a lot (or any) of experience treating them. In my case I was referred to University Hospital Southampton, Dr John Millar, consultant neuro radiologist, because he had been involved in the training of the neuro radiologist who was treating me in the hospital where I was at the time. Ultimately he had a look and referred me on to Paris for treatment – but I was led to believe that I had as good a chance as any, in the UK, of being treated at Southampton. I don’t know where you live in relation to Southampton but I would strongly recommend this approach.
My recent experience (post 2013 bleed as opposed to 1992 bleed) was that I had to challenge the treatment options (or, more importantly, lack of) that I was being offered and push to be referred on. I know that this is difficult especially if you are not currently in hospital and have a family to look after along with managing the symptoms of your AVM. I would suggest that you go back to the hospital where your angiogram was carried out and collaborate directly with the neuro radiologist there (with your GP in the loop) to move things forward and get you referred to a specialist with the experience of treating spinal AVMs.
Ultimately embolization might not be the best option and “wait and see” might be the best approach however you will at least have the confidence that you have not simply been dismissed because they don’t know what to do with a spinal AVM.
Thankyou for your reply Neil, you have been so helpful, I’ve felt so lost the last couple of days not knowing what to do or who to ask. I will speak with the go again tomorrow and ask for referral to AVM specialist. I have no problems travelling if need be. I’m not to far from Southampton (I’m in Essex) so hopefully will get the help I need. I will keep you posted if that’s ok xx
I’m glad it was some help and to learn that Southampton is not impractical. To be honest once your case is made known to Dr Millar I would imagine he (or a colleague) would be keen to learn more; spinal AVMs are very rare and therefore the opportunity to review and potentially treat one is likely to be jumped upon.
Please do keep me updated, and if you think of anything else you’d like to ask please don’t hesitate.
I sincerely hope you are able to get the help you deserve.
I see this tread was a while ago, don’t know how you are doing now and what already has been done. Seeing I was diagnosed with spinal avm in 2000 and had already 19 emblosations I think I can answer most if not all of the doubts and questions you may have, from treatment to living with it. If you still need info or support you can hit me back over here or email me at [email protected]
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