Newly 'diagnosed', petrified, spinning with lots of questions that an ENT doc couldn't answer

General
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Hi there
Thank goodness for this site. And thank you to those willing to listen to my story, sorry if it goes on a bit....

I am newly diagnosed since yesterday by an Ear Nose Throat Specialist yesterday... I had an MRI 4 month ago, after complaining of bilateral pulsatile tinnitus on left side, and occasional headache/numbness to side of face. It's taken them 4 months to even tell me??? So, he casually tells me they have found the cause, and this is great news for me. He then explains I have an abnormal connection between an artery and a vein under my ear. He said it was nothing to worry about but they would refer me to a neuro surgeon, who could answer my questions, do more tests, and agree on appropriate treatment. He said that they may not even treat. He called it an AVM.

So I now, having researched I think it more likely to be a DAVF according to his description. Either way, I am petrified. Recently my pulsatile tinnitus has regressed a little...

I guess my initial questions are:
Can these things go away on their own?? Is this ever heard of? I can see no data.

Are they EVER harmless?

Why would he say that it wasn't urgent? Could he tell that from an MRI? I thought an angio would be needed to assess drainage (according to my research which could be wrong!!)

Are these things IN the brain?? Or can they occur in the neck?Sorry, again, some places that they can occur anywhere, others specify brain.

I read that I have a 4% chance of bleeding/stroke, correct?

My doc told me carry on with normal activities...

Can I still drink wine/alcohol?

Can I still exercise??

Does anyone know if a specialist in UK? I'm considering private as I don't know if I can wait for the referral...

If ANYONE knows the answer to any of these questions, even one, I'd be so grateful. I sit here shaking as I type, I do feel silly as I know there are so many people in a worse place to me. This place is so full of strong people. I had a health scare 2 years ago, docs & everyone thinking I had cancer...turned gratefully to be celiac disease (not great, but manageable)... I thought I was on my way to recovery, recently started lecturing again... Now this... I don't feel fit for work mentally at the moment, and I am not sure how to handle this mentally.

Helllllllllp.
And thank you. Sorry to be so morose and grey, I am normally so happy :-(

Kimmy

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You’re not alone! My avm was first discovered by an ent Dr… He also gave me a nicer report and then sent me to a neuro surgeon. When he told me that I have an avm in my right cerebellum and that it’s too deep for surgery… So I have had, so far, 5 embolisms and a stroke. There is life beyond, stay positive, you’re loved, and you will scare yourself more by reading about it, although I can’t say anything, I do the same. I’m here in Texas so I can’t refer any drs in the UK… Be strong! Love you

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Hi kimmy

Totally understand where you’re coming from and why you’re so upset. I was in the exact place you are five years ago. I too went to ent as I had a whooshing noise in my right ear. I had an MRI too (only because I went private though; nhs had previously ignored my “I have headaches all the time” pleas). Anyhow they found the AVM through the MRI & I too was referred to neuro altho mine was urgent as it was huge & def did need removed.

I understand some depending on size can be left as you say. I can only tell you from my side, bearing in mind the AVM I had was big, I was told to leave mine I would almost certainly have a bleed with the chances increasing each year of one. I had to have 4 embolisations and a craniotomy to remove it but it worked it is gone. However, my surgery was v tricky & I had a bleed during it which meant many other problems were to come because of the haemorrhage. Many people do have theirs removed successfully with no bleeds or problems. Your neuro surgeon/consultant will explain it all to you according to where your AVM is and its size - like everything everyone is different!

I fully sympathise with your concerns, it is scary but seeing your specialist should help to clear things up for you. In terms of it just going no, they don’t go. You’re mostly born with an AVM & they can go undetected for years but they can also continue to grow. I was told to avoid alcohol / stress / caffeine when I was diagnosed - anything that raises blood pressure. Again, mine was v large so maybe yours isn’t? Check with your specialist. Hope this helps. If you needs any more advice or anything please just let Me know. I’m in the UK too. Best wishes to you :slight_smile:

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Hi Kimmy. I have an AVM in my brain behind my right eye. I was told by my neurosurgeon at Tampa General Hospital that my AVM has been their since birth. I have had no issues with it so far and it still looks strong. I was told I can do anything except deep sea dive and sky dive. ( I have given birth to 3 children and completed Air Force book camp with it. ) Exercise is good because it keeps the blood pressure down. Drinking wasn’t mentioned except not in excess. My treatment options offered were surgery to remove it (100% success), radiation ( maybe it works would be 5 years to find out), OR just monitor it annually to make sure it stay strong. For me the risks are the same with all the options. If it requires treatment the neurosurgeon WILL tell you what your options are. Try not to worry. Just breathe and take it day by day. We are all here for you.

Dawn

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I totally understand how you feel. For the most part what you can and can't do is all up to your doctor(s). I'm not sure if my answers would be what a dr would tell you, I can only tell you from my own experience. I'm a light or occasional drinker and yes I did continue to drink,exercise is still good although you do want to keep an eye on your blood pressure. AVM's harmeless? Some people don't even know they have them and some people have more problems. There is a fantastic group on facebook that can help you.Brain Aneurysm?AVM Support group sponsored by the Joe Niekro foundation. I urge you to goo there it is an awesome group. Good luck, and hang in there.

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HI.
I had the same problem. I am an MD and a musician as well. I lived with the sound of my heartbeat in my left ear for about 4 years, and could not sleep at all, it was awful. But in my country nobody can do intravascular surgery. from the RMI they could tell that is an arterio-venous fistula. And luckily I could go to an Italian hospital where the guy said that I could wait for another 2-3 years until some cortical collaterals would form, that would be risky to operate. I choose to have the intervention right away. They basically sealed the fistula with ONYX (something similar to superglue) and inserted a Pt piece in the vein too. In about 5 days after surgery I was able to drive home (2000 km) and the tinnitus stopped, and beside the fluoroscope-induced hairloss [which comes locally in about 3-4 weeks after surgery] and I am OK, playing music now. As every surgery. there are risks, but leaving it there is not an option. So pointly there are Your answers:
1. It won't go away if it is a fistula, it will worsen.
2. No, they are not harmless. They grow in risk.
3. It is not urgent, since one can wait and establish the protocol etc. th evolution is relatively slow.
4. For some reason beer diminished the tinnitus in my case. Probably due to vasodilation. So I kind of developed a physical addiction to beer, which I lost instantly after the surgery. Please don't take it as a hint. Better not.
5. Exercise does not bother the fistula, unless of course You hit Your head or dive or bungee jump...so don't play hockey. After they fixed You, You can.
6. I don't know any specialist in The UK, I know that my doctors recommended UK, Italy or France, where the guys has the best hospitals in this domain, so I went to Careggi in Firenze, Italy. They are really good.

Now about a year and a half went by since my surgery, and I am superfine. I ski, I have built myself a studio...etc. No tinnitus, no problem. Occasionally I have some headache, but is had to tell, if neuro related or my daughter [1,5 years] is sucking life out of me.

Best regards,
Tibi

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Hi Kimmy.
I was diagnosed last July with an AVM in the brain. I’m in the UK too and attend Hurstwood Park in East Sussex.
I have just had a cerebral angiogram and currently waiting on a follow up appointment and treatment plan. I think I will be opting for a craniotomy as it’s the only way I’ll be able to continue in my job.
Mine is congenital & I have not modified anything I do or have done since my diagnosis. I am on Keppra- though they don’t believe my symptoms to be related.
I still drink as I did before. In fact the only thing I decided not to do was the sky dive I promised myself I would do before my 40th birthday last year.
Everything is starting to dawn on me here; the potential effects this tiny little thing is and can have on my life. But it’s not ruptured so far & I’m a firm believer in everything happens for a reason - so I believe that I have been given a chance and a choice- something that many other survivors haven’t.
Keep your chin up & keep in touch to let us know how you get on.
Best wishes,
Jane x

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Thank you all so much for your help. I wouldn't wish this on anyone, but it is a comfort to know I am not alone. Obviously I don't want to die, I am 41, and have so many plans. But my main concern is for my 7 yr old little boy, we are very close, and he would have no one if something happened to me (there is no father). I think I am in shock to be honest as I cannot control my tears. I am sure I will get sick of myself, but presently feel sorry for myself. Which is rubbish I know.
Thank you all so much for your support, it means a lot to me.
So is an AVM and a DAVF treated the same? Do they pose the same risks? And treatments?

I am glad you recommend exercise, I train in Taekwondo martial art, and would be absolutely devastated if I had to give that up, it's a big part of my life, and I train hard. I will however take care that I receive no contact to the head when sparring! Probably best to be safe!

I am confused as to how common this is, some sites say that 1 in 300 have AVM, others say only 1 in 2000? Is it normal to feel let down by your body? So if AVM occur congenitally, do fistulas too?

Again, you are all beautiful for having replied to me... I think I need to drink a glass of wine, but I am frightened to!

While I remember, is there any significance that my pulsate tinnitus is better? I read somewhere that this could be a sign that its gotten worse?

Big love to you all

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It's always a shock to find out you have a rare health issue you weren't expecting to be part of your life. AVMs don't regress on their own andcan appear anywhere in the body including the brain. I have an AVM on my L ear and scalp and salivary gland. I had constant "noise" in my ear which is technically called a bruit. Everyone who has an AVM has a unique AVM and because they are so rare many doctors have very little real knowledge about them. The BEST advice I can give you is that it is imperative to see someone who truly specializes in AVMs. You usually don't have to rush into treating your AVM immediately. So give yourself a chance to catch your breath. There are doctors that people on this site can recommend who have vast experience evaluating and treating AVMs. There are several members here that live in the UK you can talk with. We truly understand how you feel when you first are told you have an AVM. Feeling the way you do is totally normal. We are here for you. You're not alone.

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Hi Jane
Thanks, I am in Bournemouth... What is the angio like? What symptoms did you have? Sorry, I have so many questions! I don't know if I can wait for the referral, its too stressful not knowing anything... I am not even sure if I have an AVM or a DAVF :-(
Thanks for such kind words, you sound like a strong person. Big hugs to you xx If you're ever this way, come and grab a cuppa! Kimmy x

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Well. Everything depends on the localisation of the fistula. At this point the best strategy is to do an angiogram in a neurosurgery unit, where they have the experience to assess the situation and establish the best strategy. I don't think the incidence is of any interest, since You have it already, so I wouldn't give a crap on the statistics. You are not a statistic, You are a living human being, and statistics does not matter. Tinnitus may oscillate in intensity [as in my case] but eventually will come back and become louder and louder. Depending where is Yours, it may not. That's why You need to have the angiogram. Mine was in the meningeal vessels was caused by a huge thrombosis which basically filled completely one of the main veins in my brain, so all the blood now is flowing only on the other side. So even in my case, which was particularly severe, treatment helped, and now I am fine, please don't add the emotional component to Your suffering.

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Everything you are experiencing is normal. You are doing the right thing by asking questions and reaching out. I agree that speaking with a doctor specializing in AVMs will be beneficial. I am a researcher and found comfort as I gained knowledge about my condition. The overwhelming feeling I had dissipated as I spoke to specialist in the field and got together a game plan. I was 42 with two children when I was diagnosed, which gave me the motivation to learn, understand my condition then fiercely move forward with treatment. Hang in there! You are doing the right things! Fierce Forward!

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Hi Kimmy!
I’m near Uckfield.
My symptoms started with what felt like a weakness & sensitivity to temperature in my right hand side. Then I got pins & needles in my face and head- this is what scared me and prompted me to go to the doctors.
Had MRI an was told I had the AVM in July last year. I haven’t been able to drive since.
The angiogram was tricky. They had problems finding a pulse in my femoral artery & so had problems inserting the catheter into the groin. This has left me with quite intensive bruising and swelling - but I’ve always been one to bruise easily so I don’t hold anything against them - they were brilliant. And you genuinely don’t feel a thing once the catheter is in. When they inject the dye I had a big whoosh of warmth in my head and could see big green flashes of lightening but that was it.
Please don’t worry about asking any questions. Happy to talk any time!! The one piece of advice I would say, is stay away from any of the U.S. websites as they seem to see this condition very differently and seem to focus more on the negative side & that’s not what I need. But maybe that’s just me!!
Jane x

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Have wine! I know I will be this evening!!
Take care x

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From what I understand they are very common. Most people are unaware they even have one. It was explained to me this way: when we are conceived we are a bunch of blood vessels. As we develop and arteries are formed most of the vessels dissolve away (they are no longer necessary). An AVM is leftover that should have dissolved but didn’t and in most cases are never an issue or a known issue. :slight_smile:

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Hey I was informed of your post, I’m 23 now 14 years after my surgery. I’ve not had any problems. I too was told that I could do anything that any other person with

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Hi Kimmy
Sorry to hear about your trouble.I came out of the military some 40 years ago and a year after I was diagnosed with a seizure disorder.Over the years I've had trouble controlling them with medication changes and dosage increases last year the V.A. finally agreed to look at me because I lost my insurance thru a divorce.They did an MRI,which I haven't had done in years by private hospitals,and they discovered I had two AVM's in the left side of my brain,too deep for surgery and both had been hemorrhaging for quite some time.after several consultation with Nero Dr. the concluded that they were actually CCM's which basically are AVM'sbut on the low pressure side which "the risks out weigh the benefits of surgery" and am being monitored for changes.I have also been informed that the changes can be positive and the bleeding would stop,but there is a greater chance of reoccurance because of the artery swelling has weakened the linings of the veins.I was told that I can return to normal activities once the hemorrhaging stops and to avoid stressful situation and activities,which is easier said than done.I wish you all the best..don't stress over it,only makes matters worse
John

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I was 34 with two young children when I was diagnosed, my main concern was leaving them with no mother. You have to speak to your specialist. I’m not sure where in UK you’re from but we have a lot of AVM specialist areas around the UK. You’ll be in good hands in sure of it.

My ‘tinnitus’ - it wasn’t really that but seemed like it - got worse when I was stressed at work, much more prominent and louder. I’d had it since my last pregnancy five years earlier but it wasnt until I got really stressed that I finally saw a Dr about it & discovered the AVM. I hope you’re seeing a specialist soon, they’ll tell you far better according to your case. X

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Thank you Tibi, you are so knowledgeable. I am very grateful for your advice. Yes, I guess you are right about the Pulsatile Tinnitus as it does seem to come back when I am stressed, which seems to indicate blood pressure maybe.
Again thanks, I am going to look into having the angiogram privately, as I don't think I can wait... I know the referral will take months!
I understand exactly what you mean when you said don't add the emotional component. I completely agree with you! Its just I can't seem to help it add the moment especially when I see, chat, play with my little boy. I feel like I must train him to dial for help, just in case mummy ends up on the floor... Ugh.But I am going to give my self this weekend to mope, then I will dust myself off, and get on with it... Thank you

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!! Maybe I will then, just a little bit :-) xx