Hi, I am new to the forum and was wondering if anyone else has found themselves in a similar situation to myself. My AVM was discovered incidentally in 2014. In 2015 I had 3 embolisations and in October 2016 I received radiotherapy (stereotactic surgery) to hopefully complete my treatment. All was generally well until I had a Tonic-Clonic seizure in November 2018 and thereafter went through some difficult times adjusting to Keppra. In December 2018, I got an Angiogram to hopefully confirm that my AVM was obliterated. The Angiogram did indeed confirm this but unfortunately identified that I now have a DAVF on the opposite side of my head. I was advised by the Neurosurgeon that it could have been caused by a Thrombosis at some point in the last few years (I did have a TIA in summer of 2016). I am interested to know if anyone else has found themselves in a similar situation?
Welcome to the site!
I’m sorry about your seizure and the Keppra. From what everyone else says, Keppra is not nice and takes some time to get used to but I think people do adjust to it.
I have only the DAVF but it was adjacent to either a thrombosis or a diminution of one of my major veins and it is that change in flow that I’ve heard attributed to the formation of the DAVF. I believe DAVFs are considered more to be acquired in this way than to be congenital.
DAVFs are also scored in a different way from general AVMs so if you get a low score, it may be the recommendation is just to leave it alone, unless or until you get some symptoms from it. As with your AVM, you’ll go through the same process of diagnosis and the same options re treatment.
Embolization seems a more common treatment for DAVF to me, reading on here, but I think all three treatment types are possible.
Hope this helps. It’s great you found us and my pleasure to help you a little along the way.
Richard, Thanks very much for your response. I have now been told that I have to get another MRI scan to investigate the DAVF further before making a decision on how to proceed. I was always under the impression that an angiogram was the ‘gold standard’ and would provide better and more detailed information than an MRI?
I think the trouble with an angiogram is that it is a focused examination and the doctor looks where he or she believes there is a problem, injecting contrast and checking for no back-flow. Only those arteries that are in question are checked.
An MRI is (or can be, at least) a more general scan, just looking for areas of high intensity blood flow and checking that those are where you expect them to be. So I think it is a better general look-round than an angiogram. I don’t think angiograms are used to do that more general look around – you’d have to reverse the catheter out of each major artery and into the next to check your whole head. It would be a long operation; I think they just look in the vicinity of what an MRI has previously shown.
So I think it makes sense to have had an MRI check and that it has shown something elsewhere in your head.
Hope this helps,
Hi, just an update on my situation. I have been advised that the Dural Fistula is not of too much concern in comparison with attempting to treat it and the potential for causing further damage. I managed to content myself with this situation but have now had a seizure every month for the last 3 months (the seizure in June was major where I collapsed in the street in status epileptics requiring emergency treatment). My Keppra dosage was increased after my major seizure in June but I have today had another seizure although it did not develop into status epilepticus- is there any end to this or is this situation with ‘out of the blue’ seizures now my life?
@Rafa I am so sorry you are having seizures with being on an increased dosage
I was able to get off seizure meds but some people do have to be on for longer times -
My DAVF is also a wait and see right now we have done embolism and the rest cant be reached without risk of paralysis.
Keep us updated
Sorry it has taken me so long to respond but I had another major seizure in September requiring ‘blue light’ ambulance to hospital for emergency treatment, which took me a month to recover from (and then had family illness issues with a close relative which was very difficult). I was unable to speak or walk for a few days before things started to get back to normal - is this a typical seizure symptom? My seizures normally begin with loss of control of my left hand for 15/20 minutes, chest pain, unconsciousness, and later fitting. The first time this happened I was diagnosed as having a TIA but the consultant recently changed the diagnosis to seizures due to the number of times it has occurred over the last few years. I personally suspect that I am having a TIA which then develops into a seizures - has anyone else had similar experiences Or diagnoses? If I am correct then I have not been on the correct anticoagulant meds since the first ‘event’ occurred in 2016. I am currently awaiting a response from my cardiac consultant regarding a potential heart issue that could be causing me to have TIA’s. Has anyone else had heart issues and an AVM (resulting in epilepsy diagnosis)? My situation has been ongoing now since the AVM was identified in 2014 and is still not fully under control. I can’t drive, I can’t drink, my wife will not go on holiday in case I have another seizure on the plane - I am pretty fed up with the whole situation!
Hi, Another update on my situation. In 2020, I developed Pulsatile Tinnitus in my left ear as a result of my Dural Fistula (which was identified in Dec 18, but diagnosed as not requiring treatment at that time). When I spoke to the Neuro Consultants in late 2020 (and had another angiogram in Dec 20), they advised that I required a coil embolisation to deal with this issue ASAP. This was carried out in February 2021. Initially, it appeared to be successful, but then the Pulsatile Tinnitus returned. I have just had another Angiogram which showed that the Dural Fistula is still there, so looks like I will be returning to the theatre for yet another embolisation.
In total, since 2014 when my AVM was discovered, I have had 5 Angiograms, 4 Embolisation treatments and 1 Stereotactic Radiotherapy treatment - hopefully my next Embolisation is fully successful and I can return to some sort of normal life!
Sorry to hear,
There definitely seems to be no “normal” when it comes to these.
This is the first time I am reading that a new AVM/dAVF formed after embolization - I’ve heard of a few growing post craniotomy
But, I am quite aware that - there is no norm to this, anything can grow, regrow & so on.
I wish you luck - as us all. . . God Bless!
Thanks for your kind words.
When I attended a meeting with the Consultant Neuroradiologist early this year before my last Coil Embolisation, he stated that he had never came across someone with an AVM who then went on to have a Dural Fistula - just my luck, I guess.
Anyway, on a positive note, the hospital seem to be much better equipped (with qualified experienced staff and equipment) to deal with my Dural Fistula problem now compared to when my AVM was diagnosed in 2014.
Aren’t we all something,
Like I said, I’ve done A LOT of reading - and, I have not come across one. But, what I have learned is that our bodies can actually do pretty much whatever they like. From the bad - to the good.
I’ve heard multiple cases on here of craniotomy/resection patients having new AVM’s grow back < that sounds pretty much impossible
I do wish you the best of luck & count my own blessings daily - at this point, I feel like I’m dodging bullets almost every day & every day is a new adventure. . . I no longer live in the monotony that most folk do, including myself a few years back before this became my reality.
Every morning I wake up & wonder where the day will take me. . . So far, God’s been good. Over three months without a ER visit.
The impression I get is that if you don’t “get” 100% of the AVM, by whatever means – be that resection, embolisation, gamma knife, sclerotherapy or whatever – AVMs seem liable to return. Whatever the weakness is that allows it to form in the first place hasn’t gone away 100% and it continues its progress with whatever remains.
That’s certainly how it seems to me, based on reading plenty of stories on here in the last, nearly 5 years.
I’m sure that where patients are told “we can only get 98% of it”, it is still a reduction in risk to get rid of the 98% but it does leave the 2% there to continue the threat somewhat.
Tough to say, it’s above my pay grade
It doesn’t really make sense to me much - just like how vascular pathways can just build. . . Again, that’s why I’m not a neurosurgeon
Makes sense, the 2% gives it still a chance for more growth?! I dunno -
But, I have seen a few on here where the patient stated it was all gone - then grew a new one. Kinda like this case - but, seriously. This is way above me. . . I’m glad for the advances they have today.
Hi, Mike, for your info, i had 6 ER admissions with seizures of varying degrees (at least 3 were ‘blue’ light ambulance emergencies, where fortunately i was with people who were able to contact the emergency services) between Oct 18 and Jan 20. Each time, my medication levels were increased to a point where hopefully things are now under control. However, it is always on my mind and I am very much aware of trying to get a good sleep, not get stressed and consume little alcohol. The current issue with the Dural Fistula is another thing to add to my list of concerns, but I am really trying hard to get back to doing the things that I like to do - get out walking with the dog, driving, playing walking football and currently trying to arrange a few holidays - hope things settle down for you, Rafa
Rafa you can contact me through DM I had similar experience. Trust me the more you touch the more you can break. I am not trying to make you scared but it seems like maybe the doctors are not as experienced/skilled as you hope they are???
You seem to have an AVM that has never been removed/obliterated completely.
There are only a few places in USA that their team are top notch.
I learned that the hard way.
Feel free to DM me so we can work together I went through something similar and realized the disease itself is a beast.
You are doing the right things.
But maybe the doctors are not as experienced as you would hope it seems like they are trying but trying is not giving you your life back