Hi there I just recently joined the AVM forum... I was wondering...
The ENT consultant that investigated my Pulsatile Tinnitus, face/head pain told me I have an AVM... But he described that I had an abnormal connection between a vein and artery behind/below my ear.... I have researched... Isn't this more likely to be a DAVF???
If so, what are the risks compared to an AVM does anyone know? Obviously I know it depends on location etc...Any advice greatly received, I was only 'diagnosed' on Friday...Am still reeling from it all, and slightly confused still to my actual diagnosis...
Poppy, I think getting some clarification from the doctor is better in this case than forging ahead on the assumption that you have a DAVF. What kind of scans have you had? How did the ENT reach your diagnosis?
Hi there I had an MRI based on my presenting symptoms. He is referring me to Neuro. But it took me 4 months from MRI to appointment with ENT to be told that I had an AVM (but he described what I thought was a DAVF)... So just wondered if I was barking up the wrong tree!
Guess I will have to wait another 4 months for the referral!
Thanks for responding :-)
I just saw though on a different thread that DAVF is difficult to treat... Is this correct?
Hello and Welcome I have a DAVF and had an angiogram and embolism in 2012 they wanted to go back in 2 months after to finish but I had such bad head pain due to having a rare stroke the year before we decided to wait and this year I will be going back.
I highly suggest that you see someone who is a specialist
I see Dr Michael Marks at Stanford who is an expert and people travel to see him
To give you an example he told me they only do about a 12 a year because its so rare so you dont want to go to someone who has only done a few
He also said its an art form to how they decide what to use to block the blood flow and create dams either medical glue which some can be allergic to like Mountain girl on here or crushed onyx or coils. I had the glue and onyx and heard some popping for about 2-4 weeks after. This could be the glue traveling.
I would not fly a long flight until you get it taken care of
Mine was complex and retrograde I had 30 artery attachments and 1 vein
Are you able to sleep?
Did you have contrast with your mri/mra?
That is a good ENT you have most dont think about AVM's
Angela
Hi Angela I'm in the Uk, so hoping to find someone. I had a MRI without contrast because I am allergic to contrast. But apparently it showed easily. Could it be a sigmoid fistula as it seems to be behind the ear?? Are they really that uncommon??? Wow. I know I shouldn't self diagnose, and I am not really, but I am just trying to put together pieces as my ENT was extremely vague, and answered with a 'don't know' mostly!
I went through a period of not sleeping so well because of the bruit, but it has diminished a bit lately, comes and goes, and doesn't seem so loud. I sleep through it at the moment. Stress, alcohol make it louder so I am guessing blood pressure etc. What does retrograde mean? So I take it that DAVF are worse than AVM? Or at least that is the general vibes I have been getting from literature read...
Thanks for your response and help... ;-)
I am just wondering... I have asked this already in the AVM section... But am I still ok to exercise? It seems ok if its an AVM but in case of a DAVF... Is there anything I shouldn't be doing?? I hope I can still partake of exercise, as I currently train in Martial Arts, and would hate too have to give that up after working so hard. :-(
Also, flying has been mentioned... And how about alcohol? still ok for that glass of red with dinner?? This is all so scary to be honest.. I have so many unanswered questions from ENT. It doesn't help! What are the chances of bleeds with DAVF's?
There are a good amount of people on here from the UK I suggest either you start a new topic or contact them privating http://www.avmsurvivors.org/forum/topics/anyone-live-in-england
I am allergic to contrast as well but they just give me a shot of benedryl
It probably does have to do with sigmoid transverse vein maybe you dont have it
I had a stroke due to 5 blood clots and the pressure blew out my sigmoid but the stroke dr never mentioned it he said some people are born without one...but a few months after I got out of the hospital I started to show signs of a DAVF but really did not mention it until I started to pass out and the dr said it would be realy rare for you to have 2 rare things....
retrograde means that the blood flow was going backwards so I could stand and take a few steps and then pass out or black out
After my embolism the bruit got much better and I no longer black out
I have low blood pressure which is good
I suggest you get a copy of your MRI the write up will show exactly if you have an avm or DAVF and if you still have your sigmoid transverse vein or not Sometimes people have it on both sides
Yes they are uncommon and since most drs are not experts in the field so please follow up with the UK people here and ask them who did it and what complications they had. Drs who do DAVF also do AVMs I asked my dr how many people have died from surgery and how many people had a stroke.....
I know this is very scary and it is serious. This support site made me feel much better and gave me so much more info then the doctors gave me...everyone here is wonderful
Yes alcohol, coffee, and stress all make it worse when your blood pressure increases it makes it worse
I would not say a DAVF is worse than an AVM for DAVF they can usually treat it with a few embolisms which is just going through your groin artery to your head and creating dams. Some AVMs are deeper and they have to cut the skull and have further treatment with gamma. So I would say that is way worse. But like I said a DAVF is serious and needs attention
I would get a copy on disc maybe 2 like dancermom suggested plus the write up find out via the UK group who you should see and see if you can send your records yourself to get the ball rolling
Please let me know if you have any other questions I am sending you a friend request now
You will be ok! Good news is this is a treatable issue just find the right doctor
I would not have alcohol maybe a glass or two a week cause it thins the blood It is scary!
Hmmm. anything that raises your blood pressure alot is not good and dont let anyone kick you in the head. What type of martial arts?
The ENT is good that he said he does not know because he is not the expert...like I said it is super rare... Get your write up from your MRI ask the ENT office to send you a copy of the write up and then where you got the MRI from ask them to send you two copies of the MRI on CD
Here in the US they usually give a copy for free and then charge $5 for the next copy
I think there is a chance of bleeds but my doctors did not really go over that with me and got me in 6 weeks after they knew I had it for the angiogram and embolism
I forgot you were UK, poppy. Ask the UK folks how they sped up the process. I am guessing they will have some ideas. It will be okay. Keep breathing....
Thanks Angela, I train Taekwondo!! Very energetic! But I can just not wear my head guard, and then no one will be allowed to kick me above shoulders!! Yikes.... Thanks for replying... I'm going to celebrate with a small glass of red in a minute! Hopefully help me relax ;-/
I know, thanks dancer... I'm a patient person normally... I guess I'm gonna have to just take one day at a time... relax... and breathe... Thanks for your help...
Hello- Yes my husband is a black belt in Taekwondo and even with head gear do not let anyone kick you in the head at all. I think you feel a little better when you know for sure if you have a DAVF or AVM
Then you will know a possible plan of attack. what you can do now is get your records google the medical stuff in the records that you dont understand and share on here and we can help you
You can also start contacting your fellow UK avm/davf people probably more avm people that DAVF to find out who the right doctor you should see and call that drs office to see if you can just send your records and set up appt. Here is the states many of us can do that so hopefully you can too in the UK I think you will be physically fine if you have to wait but mentally it will be a drag for you to wait four months
If you notice that the bruit is getting worse be sure to mark a calendar with your symptoms each day to share with the surgeon. If it does start to get worse then no more martial arts and cut the drinking
if you ever fill loads of head pain go straight to ER do not wait- Once you do know if you have an AVM or DAVF I suggest getting a medical bracelet that you can wear all the time even in water like stainless steel and putting on your AVM or DAVF and what you are allergic to as well
So you have lots of stuff to follow up this week and heading in the direction of attacking the problem and being proactive. Like I said before thank goodness its treatable.
this definitely puts life into perspective.
If you just need to vent please do so hear we all understand and there is no judging here just support!
I was diagnosed with a DAVF last June. I had an embolization done at Hopkins in July. They found over 100 arterial feeds attached to the transverse sinus vein. They used 36 large coils to treat it. I'm actually scheduled for a repeat cerebral angiogram next Monday to see if they were successful or not. That said, the pulsatile tinnitus has pretty much gone away as are my migraines that I had experienced for more than 10 years. We figure that my DAVF was probably caused from a head injury - bad fall while roller blading without a helmet about 14 years ago. Good luck with the diagnosis - I agree that this is where you need to start.
Omg! 100 arterial feeds? Did you have any other symptoms? Thanks for sharing, I sincerely hope your repeat angiogram gives you the all clear. Did you stop any activities after you were diagnosed?
LOL! The question about stopping activities after being diagnosed as I have 8 children. So, in short no. In fact, my surgery was delayed several weeks because my hubby had a meeting in England which he said he couldn't change. BTW - I was out painting my house 10 days after the procedure. Symptoms were: daily migraines for 10+ years; pulsatile tinnitus for 2 years (I got used to it!); irregular heart beat (5 years). The doc redirected the blood flow from the right side of the brain to the left side in July. I actually now notice a low grade pulsatile tinnitus in my left ear so that's why I'm somewhat anticipating that I might not get the "all clear" after Monday's angiogram. We'll see.
I had a DAVF diagnosed in 2011, after many consultations over the years its was decided, a conservative approach was the best option, I also have a small anuerysm, its is on my Left side and i have a Bruit which comes and goes, plus other ‘strange symptoms’ jaw pain, headaches, My Question is last week out of the blue I had spike in my blood pressure,chest pain, the A & E gave me some tests and didnt think I had heart attack, but since I now have a strong bruit in my right ear, can these DAVF happen in more than one place in your head, its very worrying, dont know what to do, , I am 79 years old.