Hello all, I am a newb here. I am actually not even sure I have a davf but I have a strong suspicion. I have pulsatile tinnitus in my right ear and daily headaches. I’ve had headaches as long as I can remember…but recently they’ve been constant. I get nauseous as well. I went to a Neuro radiologist and he has scheduled an mri/mra for this coming Tuesday. I am hopeful for some answers. The whooshing tinnitus is not wholly unbearable as it is most prevalent at night and I sleep with a white noise machine. But the headaches and nausea are just killing my daily routine and wipiing me out.I am curious to know what others symptoms were prior to diagnosis. Also how long did mri results take? I am feeling anxious for answers. Thanks for any insights. I will update with results, of course. Thx all!
Believe me, I know how anxious you must be... staying present and taking it one step at a time; having faith and reaching out, as you're doing, is spot on. Where are you located? My husband has a large and complex DAVF and his primary symptoms were the pulsatile tinnitus which escalated to periodic dizzy spells. An angiogram is the most definitive test to assess what is present.
See other posts here for trusted providers. If you're problem turns out to be a DAVF, go to an expert. I will keep you in my prayers.
Hello I agree with Joy
I have a complex davf and you should get results in one to two days
now the only 100% way to be certain is an angiogram mine is on the left side behind my ear and my head feels like someone is constantly pulling my hair the noise was so bad I could not sleep
I have had one angiogram and embolism in 2012 and I am going in for another one in May
I did have a stroke after the angiogram/embolism but was able to speak again the next day
Its scary not knowing and we are here for you
also some people have no side effects after but some like me had bad headaches
Hi there, I had a grade 3 DAVF diagnosed by angiogram (finally). I know it’s possible to diagnose by MRI but in my case, as in some others , it did not show up on ANY of the mri, mra, or cat scans I had through the years, only on the angiogram. I had symptoms for over 30 years including focal seizures, anxiety, migraines, dizziness, slurred speech, fainting spells, and a TIA. It was the pulsatile tinnitus that finally led to my diagnosis. I thank God for that symptom! Without it I’m quite sure I eventually would have had a hemorrhage. I feel great now after having had an embolization with onyx this past July. I wish you all the best and just know that there is great treatment for this out there ,if that is what you end up having!
I too had similar symptoms and was diagnosed with a complex DAVF. The MRI was skipped in favor of a CAT scan first, then an angiogram. I am not sure that an MRI will show a DAVF. Make sure that you are seeing specialists in this area that will continue participation from the diagnosis to treatment such as possible embolization. I was lucky to have found a wonderful professional team at the University of Maryland Medical Center in Baltimore. My embolization included access via the femoral vein and artery and the DAVF was shut off using coils. I was dismissed in 24 hours and felt great. The headaches are gone as well as the wooshing in my ear.
Very best to you know that the outcome should be excellent.
Wow thanks so much for all this information you guys are so kind. I am seeing Dr Maksim Shapiro at NYU Langone Medical Ctr. Thanks to finding this site and whooshers.com I understood the need to see a doc familiar with pulsatile tinnitus. So after ER doc referred me to a Neuro I decided to see Dr Shapiro as he is familiar with davf. He ordered mri/mra and I suppose depending on results I may have angio next. It is an odd place to be–I want them to find something to help resolve tinnitus and headaches but then again of course I don’t want them to find anything! I will certainly update and thank you again!
Yes its weird because you want that sound to stop and the headaches but its scary to know you have 100% way to know for sure is the angiogram and they can use medical glue onyx or coils to treat, I know one person on here mountain girl is allergic to the glue
I had glue and onyx and heard some popping for a few days the glue can travel but not sure what it was - I am going back in on May 7th to see whats going on if I need further embolism
Let us know what the report says
I had heard that popping sound that Angela is describing for several days after the onyx embolization that I had and it really worried me alot too, because you just don't know what's going on up there in your head! The repeat angiogram I just had this week told me though, that everything is great, the onyx is "in place", so not knowing what that sound was, I'm just going to call it "settling sounds".
I was initially diagnosed with mri scan. I’ve always suffered with headaches so I don’t know if they are related. The symptom that got me to docs was the pulsatile tinnitus with fullness in ear after sleep… Oh and mild numbness in face. I have also just had a ct scan to rule out any other things (tumours). Had that yesterday… Awaiting yukky angiogram to assess severity of davf., etc. I’m told it’s in a place that makes treatment difficult, not very reassuring! Good luck with scan
I can’t believe it’s been almost a month since I posted! Well my mri/mra has been rescheduled 3x while I wait for insurance to approve procedure. At this point, it has been set for this coming Friday. I continue to hear the pulsing sound, only at night or when quiet. It is very pronounced when I turn my head to the left. I have been so busy lately that I haven’t had much time to worry! Thankful for that. Will update with news as soon as I have any. Thx again all.
Wildpoppy–have you had the angiogram?
So I finally had the MRI today. My doctor ordered an MRI, MRA & MRV. and an MRI w/ contrast. I was in the machine 1.5 hours. I felt a tad panicky at first–am not claustrophobic but that machine is definitely close quarters!! I did some deep breathing and was better. I did have to talk to myself calmly and distract myself in my head in order to stay calm and not think about being in the tube. I did finally come close to falling asleep. With contrast I had a warming sensation in extremities and my tongue got very warm and thick. Felt I couldn’t speak. But this
Oops I hit submit too soon. The reaction to the dye was very brief and I was alright. I have the disk of approximately 1,100 pics and I am hopeful that when my doctor gets my radiology report and takes a look at films I will have an answer or at least ruled out some things. I will update again soon.
It’s been almost 2mos since I updated! Oops. Ok well the Neuro diagnosed me with stenosis of the sigmoid sinus vein. He says the scans show either a narrowing or a “clogging” is essentially how I understood it. He said he believes my chances of this being a fistula are 5%. He overall recommended I let it be and take a wait and see approach. I just took a couple weeks to digest that information & decided what to do. I am having 2 second opinions. That may seem excessive, but I am taking my health seriously, even if it turns out to be nothing. I have headaches almost constantly at the moment. Missed 4th of July fireworks due to a really horrendous migraine. And have a nasty headache right now. I have the whooshing in my ear as well, only noticeable at night though. Still have painful shooting, sharp jabs in temple quite a bit. This process takes so long–to figure out what is happening-- I haveto wait until 8/17 for one appointment and the other I am waiting to hear when they can work me in. Thx as always for the information and support here—will update again in future.
I had a DAVM class 5. For over 5 years I had the pulsating, headaches, dizziness, ocular migraines,whooshing in my ear, jabbing headaches, pain in my jaw, and then finally I ended up in the ER with the worst headache of my life. During the 5 years, I was sent to aneurologist, ENT, House Ear Clinic, more neurologist, more ENT's, physical therapy, dentists, . They did scans, and MRI's and never found the AVM. It wasn't until my 2nd day in the hospital after visiting the ER with the worst headache of my life that they decided to look for an AVM. One of the doctors had just been trained on AVM's 2 weeks before I came in. By the way in the five years, I was diagnosed, sensitive teeth, sinus problems,PMS issues, tenitus, and stress, . It was none of these things it was the AVM
Just wondered if you had any news? I am still waiting for my angiogram! Its been a year!I am in Uk... And am sensitive to contrast so they want to allergy test me first...
Its annoying as the noise in my ear has changed, and isn't that frequent anymore. I am told this may not be a good thing? Also, I seem to be having similar symptoms in my other ear, which is worrying me now too... Never rain but pours?!
I hope you are well!
I can not believe its been a year and you are still waiting! I am allergic to the contrast so they gave me steriods for a few days I think 2 days before my angiogram and it works
They never tested me but we know cause I had a reaction for another type of MRI years before my avm.
I have read sometimes you will have the avm on both sides that is why during the angiogram they check both sides of your brain
On the good news when my sound changed it was good news it had sealed itself but obviously we did an angiogram anyway and it proved it had sealed itself which was May of 2015 but just in the last few days I have noticed more hair pulling sensation than normal-
Grief! These are things I’ve been diagnosed with and I strongly feel I may have an AVMv in the back of my head. It’s so hard. No one understands. I’m in the process of trying to get a referrel.
My left eyelid twitched for two days. The rupture was near my optic nerve.
How you doing??
I’m still waiting for my allergy tests can you believe it?! 2 years later!!! I go next week though hopefully… In the mean time I have been diagnosed with hyperthyroidism (from stress)… which apparently means I may not be able to have the scan anyway, due to iodine in the contrast! (iodine dangerous for thyroid!!)
So I still don’t know whats happening…I worry all the time… I don’t know what my chance of a bleed are… It seems to be increased due to the fact the sound has changed, so its very depressing…literature seems to indicate that a change in sound is bad… How are you these days Angela?? Did the hair pulling sensation turn out to be anything?
Just wondering, you said your sound changed, but was that after treatment? Can’t seem to find anyone with spontaneous regression… Seems like it doesn’t happen
Hoping you are well