I wanted to share with you my recent DAVF diagnosis, treatment on June 26th and recovery.
I have had a sudden onset of right pulsatile tinnitus about 1‐and‐half years ago, which has been progressive worsening in nature. I was evaluated by ENT and eventually underwent MRI, which discovered an the right transverse sinus abnormalities. Subsequently, I underwent cerebral angiogram in May of 2018, which revealed a right transverse sinus dural AV fistula and sought evaluation and further treatment at Johns Hopkins after extensive research of neurovascular centers of excellence nationwide. After visit with Dr. Tamargo and Dr. Gailloud , a review of my history and images, the recommendation was made for endovascular treatment.
We discussed endovascular approaches including transarterial, transvenous with glue and/or coil embolization. They recommended transvenous coil embolization of the right transverse sinus as treatment for the fistula. We discussed the procedure details as well as the risks, benefits, and alternatives and based on their recommendation agreed to proceed with coil embolization.
The embolization was performed on June 26th for about 4.5 hrs followed by 24 hrs in the ICU. The overall experience at John Hopkins was impressive in terms of prep, care, compassion, post-op, and discharge from ICU. I highly recommend John Hopkins Medical for AVI, AVM, DAVF and any other cerebral vascular accidents/treatments.
I am currently recovering from the procedure and hope to be fully cured.
I experience few headaches in 24 hrs, and feel pressure and strange sensation in my head.
Let me know if any of you have questions or comments about my experience to date and what I should expect in terms of recovery and follow up.
It is the hope of everyone who undergoes these procedures to be fully cured but don’t be surprised if you experience life changes. My procedure was identical to yours only it bled before I could have surgery so my prognosis wasn’t as good as yours probably was. Seeking out the best medical care was a good move on your part…I had to undertake the same journey. I had my coil embolization done at Vancouver General Hospital, rated as one of the top in North America. I was lucky. The PT stopped after surgery; I still experience some headaches and am slightly weak on the left side. That was in Jan 2016. Then in Nov 2017 I started experiencing dizzy spells which have gotten progressively worse to date. I am booked back to VGH mid July for a stent placement. It seems the veins which became engorged with the AVM did not shrink back and remain abnormally large, causing excessive blood flow and pressure. It is hoped that the stent will allow blood to drain at a faster rate. So you see, this may end up a journey rather than a quick trip. Hope for the best but keep attuned to changes. It sounds as though you have been fortunate in your recovery so far. Best of luck to you.
thanks for your feedback and sorry to hear that you have to undergo another procedure. I am cautiously optimistic and will watch for any unusual sign. I am not sure yet that my procedure completely close the fistula. Did you have to undergo an angiogram to diagnose to characterize the veins or was MRI/MRA sufficient? The Drs. asked me to call in two weeks so not sure if they want an angiogram or MRI.
The angio was what finally positively identified my original AVM. I had the misfortune of working my way through a myriad of uncaring/inexperienced doctors before finally finding my saviour. I can’t say enough good things about my neurosurgeon. An MRI/MRA will identify the problem but not with the clarity of the angio. The angio does, apparently, carry the slight risk of stroke but I think the positive outweighs the negative. I last had an angio in Nov 2017 when my dizziness started after my local hospital (very small) did a CAT scan and thought my coils may have shifted or a new fistula may be forming. They rushed me back to VGH who did an angio and ruled this out. Everything had remained in place and the original fistula was gone. The enlarged veins have showed up on every scan (CAT, MRI/MRA, angio) since surgery but the hope was that they would shrink over time. This hasn’t happened. Lucky me. As I say, this has become a lifelong journey for me. I just have to accept this as my new normal. Don’t write off any worrying new symptoms as trivial. Better to be investigated and ruled out than ignored and left to become serious. I hope you get your angio to put your mind at rest.
It’s great to hear from you. I hope you get a good recovery. I had a DAVF flowing into my right transverse sinus, and I had a diminution of my right TVS. My embolization was to block off the arteries rather than “lose” my right TVS.
I had headaches for a while but it got better day by day. I had some dizziness that hung around for a loooong time and my head still doesn’t feel 100% right but I’m driving and living a normal life, so I hope you get to be at least as good as me (and why not?)
Funny you should mention this it’s been on my mind to go to John’s Hopkins for a second opinion. I’ve had 3 embolizations and they decided not to do the craniotomy at the end because of the location of the AVM/Aneurysm. Maybe I should just leave well enough alone but it does cross my mind to go there.
Pleased to hear your surgery went well and you are recovering.
My R sigmoid DAVF presented with pulsatilla tinnitus in 2015 and was diagnosed with DSA in November 15 at Walton Hospital , a neuro centre of great expertise in the UK.
I was terrified I would go pop whilst awaiting surgery and fearful of adverse outcome of surgery I had to consent to.
I had transvenous embolisation with 29 coils and trans arterial glue to widespread dural feeders in Dec 15 with surgery more challenging than anticipated with unexpected cortical venous drainage and high flow through the superior petrodollars sinus
Pulsator tinnitus has gone after procedure and I am so lucky my only residual minor symptoms were strange occasional expressive dysphasia (using the wrong or new words )when I’m very tired and feeling mildly unsteady washing my hair in shower or walking downstairs.
Whist skiing this year the other side of my head was thumping without pain so I’ve had a repeat MRA that thankfully has shown that my fistula remains completely occluded so I attribute the vascular thumping sensation to the fact that all venous sigmoid sinus drainage is now done that side. I know I still had some flow in a venous pouch of the R sinus wall around the possible causative thrombosis
I never had any headaches although they expected me to due to meningeal irritation secondary to the Dural feeder glue proximity
So I had one month off work but probable should have taken a couple of weeks more.
I still haven’t addressed the psychological impact of my brush with a potentially fatal condition and my recent minor symptoms took me right back to the pre op uncertainty and fear I felt.
For now I’m delighted to be free of recurrence and living life as normal .
I am a medical doctor so it has been enlightening but difficult to be a patient , especially with such a rare thing like a DAVF
Mods - could we have a group for DAVF please?
It wasn’t easy to find informative literature at the time and I found this group great for hearing people’s stories. The patient perspective and experience doesn’t feature in the literature.
Best wishes to all my fellow DAVF sufferes, past and present
Second opinion doesn’t hurt and could help you make decisions.
I went first to Tampa General Neurosurgery and was impressed with their Skull base surgeons but not with their cerebral vascular intervention Drs.
I can also tell you that the Drs at JHM went into details about the test results, options and associated risks. They use nurse partitioners at JHM as well which facilitates communications. All the best
Glad to hear your experience to date and thanks for the feedback. My Drs. deployed 40 coils and all kind of shaped Platinum wires to plug the fistula. They claimed that going via the veins is a lot easier and lower risk than going via the arteries.
I agree with you that creating small DAVF group will make it a lot better for us since the disorder is quite rare compared to AVI, AVM,
Great to hear from you and good to understand how you’ve got on. I think we share a lot of things, really.
We do have a @BrainDuralMeningeal group, so people can join the group. For the brain groups, there is no automatic notification from members, so if you want to call people into a conversation, you need to include the “@” and “BrainDuralMeningeal” label.
Do you mean “can we have a category?” instead? i.e. somewhere that the DAVF stories might be collated? I might be persuaded into creating a category. There is a balance to strike between creating categories or groups that are useful and I’ve been keen to create both for the Really Rare things like HHT, PAVM, Uterine & Pelvis, Extremity and Spinal AVMs but I don’t want to separate us out so much into little groups that we’re not really a community. Encourage others and I might listen
Hi to all AVM survivors,
Glad to hear your experience and thanks for your updates.
I was diagnosed with a DAVF on the left side over 3 years ago. I have been under the Walton Centre & had 4 embolizations to close the fistula. I had a follow up last week after having my last MRI scan 2 months ago. The consultant told me that a small fistula still remains but i have reached the limit (through the groin) for any angio procedures and unfortunately it is too risky to attempt any other procedure.
I have been very worried as the consultant said there is a chance of an hemorrhage. I don’t know what to do and worried sick. Can anyone please advise. Thanks
The main thing I tried to do, once I got past the shock of my initial diagnosis was to justify to myself my own position. I decided it was probably more dangerous, more likely that crossing the road would kill me. Equally, I felt better off than some other people I know, so I quietened my worries a bit that way. You’ve got to be able to carry on and get the best out of life rather than worrying about “risk”. We all have “risks”. There are certainly others who have inoperable AVMs. Consider starting your own new topic in the Emotional Support category.
The other things I’d do would be to ask if gamma knife would have a positive effect. I’m sure it is not suitable for everything but if digging more holes in your femoral artery is out of the question, maybe it could be an option, I dont know. On the other hand, you may need an angiogram for the gamma knife. Duh.
The only other thing I can think of is that you might need to lay off the hole digging for a few years and then maybe if your DAVF is giving you issues, you may be sufficiently recuperated there to consider having a go. Or technology may move on in those years and offer something else. So I would look upon it as a stay in interventions but not the end of the game.
