pulsatile tinnitus sufferer, I need help 😔

[Hendrix2021]

Hi everyone, I have suffered with unilateral left sided pulsatile tinnitus for approx 10 years now and I’m at my wits end 😢

I have been back and forth to ENT - Cardiology - Neurology with no answers. I have asked for a cerebral angiography as I’ve done numerous research on studies/papers regarding this and it appears the gold standard to completely rule everything out!) Reading success stories of people who’ve received a cerebral angiography is devastating as when everything else has failed test wise they’ve found the issue at this stage. I’ve been refused a cerebral angiography due to the ‘risk’ element but I am happy to take the risk of stroke/CVA to try and get the answer!

I’m a paramedic so quite aware of the risks involved with this procedure.

To this date I have had;

MRI, IAM views, MRI/MR venogram, MR angiogram

does anyone know of any consultants in the UK who specialise in pulsatile tinnitus/interventional radiology?

thank you so much

[Bob2a]

Sorry to hear you are struggling. You could try to get a referral to see Patrick Axon at Addenbrookes Hospital. He is an expert in Pulsatile Tinnitus. You could check out his YouTube videos too. I managed to get a referral to see him in 2019. He finally diagnosed me with Somatic tinnitus with a pulsatile element. No treatment for it but it put my mind at rest that there was nothing sinister going on.Good luck!

[Hendrix2021 in reply to Bob2a]

Thanks Bob, I have asked my GP for a referral seeing as nobody else has taken me seriously. Why do they just try and fob it off as an ENT issue when it evidently isn’t in so many cases?! I’ve read so many research papers which clarify the majority of the time it’s a vascular issue yet as it’s heard in the ears think it’s that 🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️

[777john]

Hello Hendrix, i think iv got that as well, but mine comes and goes, iv got so many noises in my head that iv just excepted them, when it comes to tinnitus iv just given up hope, i just get on with my life and im ok, trying to find answers or ways to stop these horrible noises just makes the situation worse. one think i have learned is that tinnitus never stays the same it always fluctuates.What your describing i had it worse about a year ago and it was worse in bed with my ears against the pillow it felt like my heart was beating inside my ear , it was that loud, not only that but all the pulses in my body seemed to be active, i could feel them and see them, that lasted a few month but thankfully it did stop. i hope you get the help you need.

[Hendrix2021 in reply to 777john]

I wish mine would stop John but it is a constant whoosh. I remember the date it started as I was on a break in Paris and woke up with it 😔my GP has now sent the referral to Dr Axon so I’m praying he can find the cause and even if it’s untreatable at least he may be able to advise of any help and advice going forwards

[777john in reply to Hendrix2021]

I know sometimes its the not knowing. Me personally if there's something wrong with my body i want to know because there may be some thing i can do about it for example iv known a lot of people with high cholesterol lately so i decided to ask my doctor if i could have a blood test to see if mine was ok. the result was i did have high cholesterol and have decided to totally change my diet i will have another test in 3 months time to see if its come down, i had already cut down on certain things to see if that helped my tinnitus, but it hasn't, what you are suffering with there may be some help, like i said the heat beat sound stopped but i still get the whooshing sound which is different to the heart beat what you are describing but again it comes and goes i will keep my fingers crossed for you,

[DanielaHobbs_]

hi Hendrix2021 I have read your post and wondered if you had resolved with your pulsatile tinnitus? I am also in the uk and undergoing investigation. From what I understand, very few people have found a solution ? Thank you x

[Hendrix2021 in reply to DanielaHobbs_]

still waiting for my appointment with Dr Axon which I keep receiving letters to say hasn’t been booked yet as he’s so busy… 9 years of this hell

[DanielaHobbs_]

I appreciate it. I have had audiogram, negative MRI and am due to have a CT angio , but unless they find an AVM or a fistula (unlikely), I expect the doctors to send me off to audiology and close the case. The point is, even IF there was a dehiscence, vascular loop, or a high jugular bulb, would anyone in the UK operate? My biggest challenge at the moment is that the pulse gives me horrendous noise distortions. What investigations have you had so far ?