Hi there

I had a cerebral angiogram done on Tuesday and have been diagnosed with a dural AVF. The doctor who performed the angiogram gave me the diagnosis immediately after the procedure but said that he found it in an area he has never seen one before (sort of above my ear instead of behind it towards the base of the skull). He is going to look at the results of the angio some more and compare them with my MRI pictures and then let my neurologist know whether it can be sorted out through endovascular embolization (the method where they use the catheter).

My history is as follows:
Age 34
Female
Pulsatile tinnitus began on 10th March, 3 days before my second baby was born
Bells Palsy for one month when baby was 3 weeks old
No other symptoms besides the pulsatile tinnitus which is rather disrupting especially with a newborn and a toddler to deal with!

I have so many questions about this condition but have to wait until next week to see my neurologist. I suppose my biggest question is around the embolization. Does anyone know the risks associated with this surgery? Has anyone had it done? Also, what is the difference between an AVM and an AVF?

Thanks

Jenny

bumping up

while i don't know alot abouut the AVFs i did just some quick reaserch on them only becaue you had me really curious as to what really IS the difference between AVM and AVF.i do know about AVMs and other vascular malformations but the AVF was new.what i basically saw is that with an AVM they are found within the actual TISSUE within the brain or spinal cord,and AVF is found in the COVERINGS surrounding the brain or spinal cord.while AVMs are kind of just a big tangle of arteries(they do in most cases look like a big old glob of worms)the AVF is a bit odd in that it appears to actually connect an artery to a vein,and in some cases more than one artery can be connected.jst the simple fact that veins are not used to carrying high pressure is where that biggest problem would lie for you i think.there is just never supposed to be any connection between the artery and vein directly.there is normally some kind of a barrier sort of thing when there is a change over area?like a cappillary bed or something that actually reduces down the high pressure to low pressure that the veins are are used to carrying.does this make any sense or am i just confusing you?you have high pressure kind of surrounding some areas of the brain where it is supposed to be low veinous pressure,at least that is what i got from what i read about them.this just creates a higher risk for you with certain vascular incidents occuring.

i seriously would see an actual neurosurgeon and not a neurologist for this.you need that particular level of expertise when decideding about surgical options.i get the impression that the procedure is actually going to be done by a neuroradiologist?they just do alot of the vascular procedures.but you still do need that consult with someone who has actually been inside peoples brains and has the most actual working knowledge and understanding of the risks involved,a neurologist does not have that at all.you need a neurosurgeon.i just cannot imagine any neurologist having this level of expertise,really.i have had to see plenty of both NSs and ologists and i know just from seeing them both a NS wins hands down as far as the inner workings of the brain,the nerves and the vascular issues associated with any sort of procedure.you just need the best info possible in order to make the best most informed decisions with this.

i would highly suggest that you really research the heck out of AVFs and gain as much knowledge about them as possible in order to really benefit the most from any consult with anyone you see from now on.it really does help alot in just understanding your situation and the what the docs are telling you.this really was the best move i ever could have made with all of my many medical nightmares.its not as hard to make decisions when you actually have a clue about what you are really dealing with.it does help.i wish you tons of luck with this.please keep me posted on how you are doing,K?Marcia

Thanks so much for your reply. I did not know that it was about the location of the problem. And it seems from what you say that an AVM isn't actually the same thing as an AVF either. I had the AVF described to me acurately but then was handed a booklet which seemed to describe an AVF as a type of AVM. Very confusing.

You are right. I am seeing a neurologist, not a neurosurgeon and it was a radiologist that did my angiogram and will do the embolization if I go down that route. I will keep your advice about a neurosurgeon in mind when seeing my neurologist on Thursday.

One of my first questions will be around how risky this condition is. The radiologist indicated that the pulsatile tinnitus may be something I could just choose to live with which indicates that an AVF (or perhaps just mine) is not high risk at all. In your research did you see anything on the risks? I have searched and searched on the net and can't find anything on the risks or whether there are any.

Something else has happened which I'm wondering whether to tell my neurologist about at all on Thursday...after 4 months of loud, 24/7 pulsatile tinnitus, on Saturday it went quiet. And it's still quiet. How on earth is that possible considering the nature of an AVF (ie. an artery is joining directly with a vein with no capillaries inbetween causing high pressure blood flow through the vein)??? The radiologist said they can spontaneously recover (I specifically asked him this) but what are the chances that this happens 4 days after I have the angio? I'm so reluctant to think that it's spontaneous recovery as i may be setting myself up for major disappointment. On the other hand if the tinnitus has stopped, the pressure in the vein must be reduced which can only mean that the connection between the artery and the vein has corrected itself!! Oh I'm so hopeful and yet so scared to hope!

honestly?i really cannot,considering just what the AVF actually consists of,see just how it would even be able to spontaneously correct itself,you know what i mean?there could possibly have just been some sort of shift in the blood flow or something similar.i really don't know enough about the behavior of these to really be able to give you solid answers.i really do think tho that seeing an actual neurosurgeon really would be the best way to go in order to obtain the best possible info on all possible treatment options and an eval of your films.i am wondering just how they actually treat these.i had a coil embolization done on my brain aneurysm a couple years ago.that went well.believe me i was grateful.it could have been pretty nasty if it had ruptured before or during the procedure.

while researching the risks of the AVF did you search using "risks AVF"?in a sense an AVF IS a form of an arterioveinous malformation,so in that sense it would be somewhat true.it just isn't the 'normal" AVM that is the tangled mass of of arteries,thats all.just a FORM of AVM.does that make any sense?there are just a few different forms of arterioveinous types of vascular malformations

i do think what the rad was referring to with 'just living with it" was in referrence to only the tinninitus not the AVF itself.just my take on it.from the little bit of info i read on the AVF on just one site was the risks maily had to do with the fact you are placing very high pressure blood flow into a vein that is not used to having to contain that much pressure(veins are just much weaker/fragile blood vessels).it could i would imagine create a much higher risk for stroke or even an aneurysm.you have particular areas in your brain covering that are carrying high pressure that are not normally used to doing that,that is the risk factor.

you just need to realistically consult with a good neurosurgeon just to really get alot of your questions answered and find out ALL and any possibile treatment options availiable,since the neurosurgeons actually DO some of these procedures,this is really just the right person to see,neurologists just do not go there.you just really need to know the full scoop of what you are dealing with.i just think the surgeon would naturally be the best qualified and be able to really fully answer questions compared to what you would get from any neurologist.seeing the neurologist for preliminary info would be fine,just make sure to also consult with a good neurosurgeon who actually treats brain/vascular malformations.it doesn't mean you have to have surgery from him or her,just getting the best availiable info from them.i saw the interventional neurorad and also consulted with my neurosurgeon when my suprise aneurysm just appeared one day,and was Dxed on films.you just need the benefit of THAT level of knowledge and hands on experience from the NS.if i were in your posistion i would not even go to a neurologist just stick with the NS and the neurorad.but since you have an appt with the neuro already,just see what he has to say and ask to be referred to a good NS by either your primary or the neuro.you just need that opinion and the questions you have answered by someone who has actually worked on vascular malformations.trust me,they just really know all of your real risks much better than any neurologist possibly could,both living with it,during any actual procedures and possible post op complications,ya know?

i do wish you luck with this.please keep me posted on all things,i really DO want to know how you are doing Jen,marcia

Thanks marcia. Well the tinnitus is back. How disappointing but I expected it. Yes, the neuroradiologist was referring to me living with the tinnitus but by that he meant living with the AVF too which indicated it is not serious in my case; or perhaps less risky than having the embolization. I will soon find out I guess. I'm going to give him a call to make sure he has consulted with the neurologist before I pitch up there tomorrow. He was very nice and very informative but I have found my neurologist pretty sub-standard in her 'bedside manner'. wouldn't you think that she would've called me since the angio on Tuesday just to let me know whether what I had was life threatening and to advise me to make an appt? I had to do my own research and then phone her rooms of my own accord a couple of days later and make an appt which I couldn't get until a week later.

I cannot live with this tinnitus. It is really affecting my quality of life. It's going to be an interesting decision I think. I'll get a referral to a neurosurgeon.

i am glad you are going to get that referral.it doesn't appear your current neurologist is someone you want involved in your care,really.there are many more real nice neurosurgeons and docs out there that give us some options when we don't particularly like or feel our current docs are someone who are the best choices for us.you just need the best most informed types of specialists for your issue and i really do think a neurosurgeon is that best source.between the neurorad and the NS they should be able to give you the best info and any possible treatment options for the AVF.you just mainly,for right now anyways,need to really know just what your risks are for your situation. it can vary depending on other factors,but mainly the area where this is actually located and what it is and could affect.then of course,options for intervention or would you actually be better off leaving this alone.although,just from what i have found out about these,leaving this alone has its own set of risks as well.this is why you just need the best info.i wish you luck,please keep me posted jen.Marcia

I have a "Dural AVM Fistula" and this sounds like what you have. Basically it is an AVM in the lining of the Brain (Dural) but the AVM has a direct connection between an Artery and a Vein (Fistula). If you do a search for a ""Dural AVM Fistula + Toronto"" I think you will find some useful information. Mine was surgically clipped and embolized 11 years ago. Unfortunatley:( completely blocking offf the AVM was going to cause more problems than the procedure would fix so it is still partially there and active. This results in my still having the Pulse:( in my ear really bad and a host of other small nagging problems. These things do pose a cumulative risk of hemmorrage/stroke over the years, so a consultation with a Neurosurgeon with expereince with AVMS is required. If you do have the same thing, it is a very rare problem (1 in a million) people will have this. Do to it being rare, getting the right advice is critical.