Pulsative Tinnitus - how concerned should I be?

[Purplepeople]

Hi, I’m new here and not really sure what I’m doing yet so please bear with me.

ENT diagnosed AN in left ear after I was referred for pulsative tinnitus in my right ear. They were totally dismissive of the reason for my referral and I wonder if I should be asking for another referral? I was told that my “right ear wasn’t the problem but my left one was”

I’m currently waiting for a neurosurgeon appointment for the AN, Everything has moved so quickly with that (a matter of weeks since going to the doctor) that I’m not sure if I should be more worried about that than the pulsing in my other ear?

[Freddy1000]

Hi, I had a large An in my right ear (which has regrown 3 times since ) along with pulsative tinnitus, after removal of the An the first time it left me without hearing in that ear , the tinnitus got worse but the pulsating went away and I didn’t get it after the two other regrowths which were also removed , recently the pulsating returned and nothing could be found on scans which I have routinely every 2 years , there is a small tumour still there but not causing any problems for me atm.

Unrelated to this , ‘which is what I thought’, I was diagnosed with high blood pressure and put on long term medication ,and wow the pulsating stopped but the tinnitus is still there , I asked the doctor why the pulsating had stopped and I was told it was probably down to the high blood pressure causing the tiny vessels in the left ear to pulsate .

I would be more concerned with the An that you have , the An you have may cause pressure in the head so therefore could be a reason why your getting this pulsating in the other ear . Don’t take as gospel as to what I have put as everyone dealing with these illnesses can be different and problems can vary massively.

I really do hope you get on well and I hope for the very best for you , keep in touch to let me know how you get on .

Colin 🤞

[Purplepeople in reply to Freddy1000]

Thanks so much for your response. The more I read about this AN the more concerned I get.

I’m already being, sucesssfully, treated for high blood pressure. The pulsing comes and goes but I get it at some point every day - some days are worse than others.

Sorry to hear your AN regrew, so much for the hospital telling me that once it’s operated on it won’t come back!

Who knows how long I’ll be waiting for an appointment with the neurosurgeon so I think I’ll revisit my GP and see if he can give me any more information, I was so taken aback by the diagnosis that I didn’t really ask any questions and certainly didn’t know which questions to ask.

Thanks again for getting in touch, I hope everything goes well for you going forward, looks like I’m just taking my first steps on what may be a long path.

[Freddy1000 in reply to Purplepeople]

I have to add my first An was critical and life threatening and I was in within a few days, the An was 15cm and some was left in as it was too dangerous to get it all out hence why it keeps coming back and I was told this is a rare case atm it is 1.5 cm and not doing a lot thankfully , it is correct to be told that normally after removal it is the end of it , I’m pretty sure the smaller it is the less the risk of damage it causes if any and some people make a full recovery without any lasting complications.

Good luck 👍

[drdeanbellavia in reply to Freddy1000]

Was your surgery by gamma knife or invasive surgery? Gamma knife kills the AN (and very effectively in my experience with my 15mm AN), while invasive surgery just tries to remove whatever they can. If an AN keeps growing back you probably need to kill it with gamma knife.

[Freddy1000 in reply to Freddy1000]

Hi, the first tumour was in 1988 I was 21 years old , and the reoccurrences were 1995 and 2002, all with invasive surgery , it caused me massive problems and I have learnt to live with this ever since , I’ve been lucky as to have no excelleration in the growth , I believe the residual what is left is located on or near the brainstem , so whyever I’m getting no more new problems they are leaving alone with close monitoring . I had vestibular rehab in 2014 for many weeks and that made me worse , so that was no good , I was told the brain was probably to well trained to reverse balance problem i have as it had been so long since the initial illness , I lost all hearing in the right ear , affected my R eye, swallowing is impaired on that side (gag reflex) facial palsy and neck all on that R side taste only in one side and diminished sense of smell on that side ,and slow dexterity in the R Hand , there were many cranial nerves involved I believe and it’s so messy in there , I was told at the time by the neurosurgeons it was the largest An they had come across , and I was only given a 30% chance of survival , but hey I’m still here 😊

[drdeanbellavia in reply to Freddy1000]

Frankly, I have not been very impressed with neurosurgeons and the invasive surgeons are getting less and less work with gamma knife, etc., available. You might want to find a gamma knife surgeon who has done hundreds of surgeries and get their opinion.