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AVM Survivors Network

ENT Referral Help


#1

Hello, I have been referred to ENT today. I have been having a deep humming noise in my left ear, pain deep in my ear and around it, a weird whooshing sound in my neck (that no doctors are caring about), light headedness etc. I’m so worried about having an AVM due to family history and it’s making me so sad. I just want to make sure it’s not anything sinister but I’m worried that ENT won’t refer me for an MRI, I feel that it can be harder to get diagnostic tests in the UK with the NHS. Also do I need to get an MRI or an MRA? This is my second post here and I’m just looking for some advice in general or some support.


#2

Hi,

Glad to hear you have been referred on to the ENT - I think the best thing to do is to make a note of all the symptoms you are suffering and take these to your appointment so you can make sure you run through everything with them. It’s easy sometimes to get a bit lost in appointments and this may well help you.

I had my AVM diagnosed and treated through the NHS and I would have full confidence in them to help you and get you the right treatment - don’t worry about the type of scans etc, these will be dependent on various factors so just listen to what the doctors say, make some notes you can refer to later on and let them guide you through the process.

Good luck!


#3

@jenmaireee

My first proper diagnosis of my dural arteriovenous fistula was with an ENT. My GP had referred me to him for tinnitus so he did all sorts of hearing tests on me, then said “So, Mr D. How long have you had tinnitus for?”

Me: “Oh, about 20 years. It’s not the tinnitus I’m worried about, it’s the pulsatile tinnitus.” [= the whooshing sound]

Doc: “Pulsatile tinnitus? Oh”, and he went to find a stethoscope. He then came back and plotted all over my head with the stethoscope. When he found the spot, he just stopped and listened. It was fascinating.

So I think ENTs are fine as a first diagnosis. If your ENT is anything like mine, you’ll make their day. Honestly.

Doc: “Well, you’re my last patient of the day, but my most interesting patient of the day. You have what we call an arteriovenous malformation”, and my journey began.

Having heard my “bruit” he then referred me for an MRI. The first was literally an MRI (no contrast) and I think you want that general MRI scan to see the extent of anything going on. Once the radiologist has a bit of a view as to how big / small / whereabouts it is, they will then probably want to do a more specific angiogram. But I think you start simple and get more zoomed in. I think you need that MRI to inform the more specific angiogram.

An ENT (or GP) armed with a stethoscope is a good first step. And I’m in the UK, using the NHS.

Very best wishes,

Richard


#4

As far as i know AVM’s are not hereditary. It was the first question i asked my neurosurgeon after i was transferred to the RVI post bleed. And he said they are congenital. Best of luck in searching for a diagnosis and hopefully recovery.


#5

AVMs in themselves are not believed to be hereditary but there are some hereditary conditions that include AVMs as a facet, so @jenmaireee may be worried about something like that.


#6

I didn’t know that. I have only just started to learn more about them in the last couple of weeks. I ve known about mine for 2 years. Received gamma treatment 18 months ago. But i have had oedema for 6 months now as a result of the treatment.


#7

It’s great to have people helping each other and I feel I blurt out far too much, so it’s great to hear others’ voices. It would be fabulous if you start your own topic and tell us about how you’re getting on, because you’re not the only one to go through the oedema problem. It’s great to hear from you.


#8

Hi Jenmairee, I looked up the difference between mri and mra at this site: https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=ug6636
I would suggest you have a neurologist read the results. ASK QUESTIONS! Find out if your avm (if that’s what it is) is operable, which in many cases, it is. It could be a simple yet permanent solution. Be your own best advocate by asking direct questions and get educated about your condition. Insist on a second opinion too. That’s what I did and it saved my life.