Cervical spinal dural arteriovenous fistula c-3 to t-1 prominent blood flow voids overlaying dorsal aspect of spinal cord. Worried scared don’t know what to expect as haven’t seen anyone yet.
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Hi Jimmy
I was scared too, after the last MRI I had indicated i had a SDAVF, but i must say, once i was admitted urgently into hospital (Hull Royal Infirmary) i was operated (embolism) within 8 hours. By the time i was operated on, i couldn’t even sign my consent form! However i trusted all those who operated on me and their incredible expertise!
I then spent another 8 days recovering, before being discharged.
All the Staff were brilliant and the level of care was as good as it gets!
I’ve made a post in this forum and my personal story is included in my bio.
Best of luck for the forthcoming procedure and i hope it goes as well as possible.
All the best.
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Mine is a Spinal AVM in my thoracic area. My advice to you is to get at least 3 opinions from the very best neurosugeons that you have access to. Seek opinions immediately, even though you may have time on your side. They will tell you if you need to act immediately or if you can wait and gather information. Typically, there is time for thought (unless you are experiencing symptoms), as they grow slowly. In my case, my AVM grew a secondary aneurysm, and my AVM bled. But, even then, it was a lapse of about 4 months before my surgery, which gave me time to get opinions and prepare.
You should be getting opinions now. I’ve heard that Dr. Michael Lawton at Barrow Neurological in Arizona, is the best, and you can send your records to him for review. But, you can get other names from people on here depending on where you live. I’m not referring my own doctor because he died since my surgery.
Hope you get the help that you need, prayers and well wishes.
Jimmy,
Welcome!
I moved your post into the Spinal area so that all of the guys and girls who’ve gone through the same as you will see it. For some reason, despite spinal AVMs being rare among rare, I think we’ve got a handful of new joiners in the last week or two, so you’re among friends and there are a few of you who are worrying about it all at the same time.
Have a read through the Spinal category and you’ll find a bunch of stories that the other Spinal folk have told about their adventures. I think it’s fair to describe your situation as serious and life-changing but there is still great life to be had post op.
I know that I felt completely knocked off my confidence with the discovery of my brain DAVF ten years ago now but with spending some time here, I was able to learn about my prospects and rationalise how to cope with it. I hope the information that we have here and the friends that you’ll find who have done the same as you will help you to deal with this very unwelcome twist in the road.
I found visiting here too be helpful about half of the time at your stage and perfectly frightening about half of the time, so I found I had to take myself away from time to time but overall, I found the ability to understand from others and share with others to be very helpful. I hope we can help you through a good portion of any questions you might have.
It’s great to have you on board. Welcome!
Richard
Jimmy,
I failed to mention in the previous message, this one most important thing. Most doctors do not even know what a spinal avm is. And, most neurosurgeons will never, ever see one much less operate on one. They are extremely rare, unlike brain avm’s that are seen fairly often.
Be careful about who you are getting opinions from. Most of these neurosurgeons have no experience with spinal avm’s. They aren’t likely to be very forthcoming in this information unfortunately. Experience wise no one probably has more experience than Dr. Michael Lawton. You can go to his Facebook page and read about all his surgeries and even watch in progress.
@spinalavmgirl Jimmy is in the UK and care is much more integrated in the UK than the Wild West of medicine that you have in the US.
I’m expecting Jimmy’s neurosurgery team to hold a multidisciplinary team meeting with a diverse set of doctors who will make a recommendation as to where to direct his care, which may well be in a different city.
@Jimmyslink Spinal AVM Girl is right that you’ve got among the rarer presentations of an AVM, so when you have a meet with a neurosurgeon once they’ve done the MDT meeting, you might ask about the experience of the relevant doctor with a spinal AVM. You do want someone who is a specialist, though I am confident that in the UK you will be referred to an appropriate specialist.
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Hi Jimmy, so sorry to hear about your spinal AVF. I was diagnosed with a spinal AVF (C1-C7) in July of 2023 at age 43 (likely had it all my life but just learned to live with it until I couldn’t!). Like you - no one had seen anything quite like it…I believe it was the first one my neurosurgeon had ever treated and the second one he had ever seen. Was so thankful I was able to have an embolization procedure done (platinum coils) and it was successful despite being very risky. Three years later and I’m still improving in strength…but I consider myself back to full health - running and being able to do most things. I’m cautious not to stress my body out or overdo it. Although I feel recovered physically, it has taken much longer to recovery mental/emotionally. It was such a stressful event in my life that I am still taking counceling to help with post traumatic stress etc. Hope you are able to be treated in the UK and praying for a wonderful outcome for you.
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I don’t know the protocol in the UK, it sounds I’m sure to be excellent treatment. But, “might ask” about experience is quite the understatement. Definitely ask about experience. You are your best advocate.
Best to you.
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Yes. I agree.
I did a little digging yesterday to see what I could find about neurosurgery and spinal neurosurgery in the UK and the practices that I found were split as:
- Neurology
- Neurosurgery and
- Spinal Injury
In my case, Leicester is my nearest city and it has a neurology practice but no neurosurgery practice. When I went to see my GP about my brain DAVF, she initially referred me to an ENT in Leicester hospitals because she thought that the noise I could hear was just tinnitus. However, the ENT (prompted by me tbh) diagnosed pulsatile tinnitus (using just a stethoscope) and a brain AVM or DAVF.
He then ordered an MRI to validate his findings. Once that MRI was reported back to him (which took 2 months and I think I had to complain to the hospital patient liaison service to get it back to him in that time) he concluded that I did indeed have an AVM/DAVF and he then needed to refer me to neurosurgery.
That referral took a further month to go through to Queen’s Medical Centre in Nottingham and I was invited to QMC after the neurosurgery team had looked at my MRI results. They had a multidisciplinary team meeting (presumably deciding between craniotomy, embolization and radiotherapy) and I was invited to meet a Consultant Interventional Radiologist, who was assigned to treat me. He talked me through what has been found and what he proposed to do to resolve it.
I then had to wait a further 4-5 months to get to the front of his elective surgery queue and I had an embolization with him.
You do sit in a bit of a black hole waiting for these steps in the process to link up and it can be important to make sure that the steps are linking up but it does all happen behind the scenes in the UK. The patient usually shouldn’t need to worry about who to see: it is all arranged and paid for by the National Health Service.
In @Jimmyslink’s case, it may be that he is currently being referred to one of the nation’s spinal injuries practices rather than in my case to neurosurgery. The nearest spinal injuries specialist centres to the West Midlands appear to be in Sheffield or in Oswestry. If the assessment of the specialism required is more particular, it might be that referral further afield is required. There are other practices across the countries of the UK. The UK’s primary spinal injuries unit is at Stoke Mandeville hospital in Buckinghamshire, the birthplace of the Paralympics.
But it is difficult to know whether Jimmy will be seen in a neurosurgery practice or in a spinal injuries practice or with some collaboration between the two. @DavidH might be able to help us out with what sort of unit he was seen at for his spinal microsurgery. David lives further north. His nearest spinal injuries practice is likely to be at James Cook hospital in Middlesbrough, whereas neurosurgery appears to be at the Royal Victoria Infirmary in Newcastle.
Hope setting out a little about the process might help Jimmy. Referrals between hospitals in the UK does feel like sitting waiting for who-knows-what to happen next. It does feel very out of our own control.
Very best wishes,
Richard
However, we can see that Gary was seen at a neurosurgery service rather than a spinal injuries centre, so it may be that it is usual to do brain and spine neurosurgery in the same neurosurgery practice. Asking about how many SDAVFs a neurosurgeon has seen, whether they or anyone else in the service specialises in spinal or whether it is necessary to be referred to a national centre rather than a regional centre would be good ways to start the conversation. I can’t say that the one neurosurgeon I got to talk to was very open to being questioned! 
My interventional radiologist was also quite unused to being questioned but I decided the latter was first class.
The motivations in UK medicine are almost pole opposite of the US, which I think is a factor in these things. In the US, a surgeon gets paid for the work that they do. Increasing that workload ups their income, so there’s a potential monetary bonus to be had from taking on the patient in front of you. In the UK, the limit is not cases in your office but the public money to fund the patient in front of you. The possible temptation in the UK may be to do the minimum required for the patient before you in order to try to treat more patients with the limited pot of money that is available.
It is that opposite set of financial motivations, apart from doing the very best for each patient, that characterises the US in my mind as still rather like the Wild West. There are definitely instances in conversations on this website where it appears the neurosurgeon is rather determined to have you as his or her patient than lose you to some neighbouring or nationally-acclaimed practice. I don’t believe that competition for patients is an issue in the NHS.
Jimmy, I feel we are taking around you. I hope these are useful conversations, though. If there are things you think we might be able to share from our experience, do ask the Spinal ladies and gents here about how things worked for them. I hope that by doing so we can help you with your ‘journey’ through all of this.
Very best wishes,
Richard
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Hi Richard.
Wow you are very knowledgeable about everything accociated with SDAVF.
I didn’t even know such things existed before i unfortunately got the condition.
Looking back now, i possibly had a few minor signs which might have been present, up to 2 years beforehand. What i now know as leg spasms, were happening to me 2 years ago. Just before i was going to try and sleep. Unexplained pain in my upper left thigh. Finding it hard to pee, occasionally.
However, from complete urinary retention, which was first attributed to an enlarged prostate, to recieving an embolism, took only two months.
And i only found out it was a SDAVF a few days before i was rushed into Hull Royal Infirmary from Scarborough A+E, as i had almost becone paralysed.
B.T.W my discharge letter from Hull actually says i have a Posterior condylar Fistula. But my G.P explains that diagnosis just refines where it was. At the base of my brsin stem, i think?
I’m still reading as much about this subject as i can and have also joined an SDAVF group on fb.
Alresdy i can see how lucky i was to have this diagnosed so fast!
All the best
Hello Gary,
I am also having quite similar Spinal davf like your case And i am in GTA near Scarborough , a bit long post surgery issues still persist like lower abdomen Spasm etc etc constipation And Oab etx etx:
You can keep in touch for experience sharing and support if need .
Thanks
Syed
Thank you for all the responses. I have mild autism so I’m struggling taking all the new information and language in 
but much appreciated. I don’t have anyone to help with this so just trying my best. I have an appointment at the royal derby hospital with general neurosurgery but that’s in a month.
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If taking your time to re-read will help, feel free to ask anything of us. If you don’t have family around to help you, consider talking to a good friend about what’s going on and see if they can help you through. They are wholly welcome to sign up here as a friend (or family etc) if they want to get up to speed.
A lot of us find that our friends struggle to understand “hidden” diseases like this and some friends or family melt away when we really need them but if you’ve got someone who you can turn to to help, I’d recommend it, even down to coming along to appointments with you.
When you see the team in Derby, be open with them about how you’re getting on dealing with the language or anything about this new and frightening situation and I’m sure they will make efforts to ensure you know what they’re talking about. You can’t sign a consent form if you’ve not understood the medical words.
You’ll be fine. If you need us to be here for you, we can do that as well. Just be open. If there’s anything we can help with, just ask.
Very best wishes,
Richard