Update on pulsatile tinnitus treatment

[JEHSPORT]

I haven't posted for a while brief recap first: I developed Pulsatile Tinnitus in early 2017. GP is very good but ENT referral was disastrous as they did not understand that PT is not tinnitus. They didn't seem to understand tinnitus either! And they wasted 4 months by referring me to a consultant who was no longer practising.

My MRA had showed a dural arteriovenous fistula which was causing the PT.

Following a conversation with a fellow sufferer on the Whooshers Facebook page she recommended a consultant at Addenbrookes. I had to wait about 2 months for the first consultation but he understood it all - I had complete faith. And he referred me to a Neuro radiologist. 6 weeks later I had a CTv and then a cerebral angiogram.

I had an appointment booked for today for the follow up but last Monday (15th) I had a call asking if I could go in on Wednesday (2 days later!) for the embolisation procedure. I took the appointment. It was a 6 hour operation and 2 nights stay. As far as I know he embolised the fistula but also fitted some stents. I had a stonking headache for a few days - only to be expected after someone poking round in there for 6 hrs!

But I am very pleased to say that so far the pulsatile tinnitus has gone although I have been left with some underlying normal tinnitus which may have been there but masked by the whooshing.

I am in no way negating normal tinnitus as I understand how devastating it can be but at the minute I can cope with this as it is minimal in comparison to the whooshing I had before. I am 9 days post op - still tired and not a lot of stamina but building that back every day. The headaches have virtually gone. Im getting used to a whoosh free life!

They want me back in about 3 months for another angiogram to check all is well. I cannot praise the team enough.

My advice to anyone with PT is to keep pushing - for tests, for referrals to the right people, for treatment. I know there are a number of causes of PT but there IS usually a cause, often vascular. And therefore a potential treatment.

ENT wasted me 4 months, Addenbrookes tested and treated me within 5 months of my first consultation.

Good luck fellow sufferers!

[Xene]

Yay JEHSPORT, that's brilliant news I'm really pleased for you. Back in the day Addenbrookes literally saved my life after I was misdiagnosed, T being one of the symptoms!

[JEHSPORT in reply to Xene]

I'm not sure if I can claim that they have saved my life but they have certainly saved the quality of my life and therefore keeping me independent and productive.

We are so lucky to have the NHS. Some US members of the Whooshers Facebook page were discussing having to incur major debt as their insurance didn't cover the treatments.

I am pleased that you had a good result.

Take care.

[Peeweecat15]

Could you tell me the name of your consultant at Addenbrooks?

Thanks

[JEHSPORT in reply to Peeweecat15]

Mr Axon is the consultant, he referred me to Dr Higgins, the neuroradiologist who is treating me.

[Blackpink101]

Hi. First of all im so happy for you and i hope that you regain all your energy and enjoy your life to the fullest. It has been a few days since ive I come to know of PT. The thing is I’ve had this pulse like whooshing sound For as long as i can remember in my right ear. It’s not constantly there. But it iccurs early in the morning or when i stand suddenly or sit down or turn my head to a certain angle. I never paid much attention to it but early thus ear T started in both my ears after 2 cold attacks. The T constantly changes sounds. Idk what to do. Along woth the T sometimes at night while im sleeping i get this really high pitched T along with pain and a strong whooshing sound that lasts for about 10 seconds. Idk what to do. I’m having my finals and can’t go to the ENT this month. I’m so sorry for ranting to you but I’ve been posting on this page but nobody really answers except a few.

[JEHSPORT in reply to Blackpink101]

I am so sorry that you as going through this - it really is not good at all. I had plenty of dark days when I thought it would never end. And for you it must be very difficult if you are trying to study as well as stress won't help. I would advise that as soon as you can you get yourself referred to ENT. As there is usually a waiting times for appointments is it worth seeing your GP now so your ENT appointment is soon after you finish your finals? When you see your GP & ENT have a list of your symptoms & if possible a diary of what happens, when and what you were doing at the time. If you mention that you've been researching it on the internet make sure they know it's only trusted sources like the BTA - some Drs think we believe all the rubbish that is on the internet!!

Take some printouts of some of the factsheets from the BTA site including the one on pulsatile tinnitus. Arm yourself with information and a list of all the questions you want answering.

Have you tried white noise apps to help mask the sounds, particularly at night? Many have timers. If you do use white noise, particularly with earphones the temptation is to have it loud enough to drown out the T. However the aim is to retrain your brain not to hear the T so try it at a lower volume that makes your brain seek it out. Sounds odd but I believe it works.

Or meditation apps? I have used CALM - a sleep story by Stephen Fry is very good.

I know you are busy with yourstudiesbut try to have sometime for you - be kind to yourself! And if you feel like you are being fobbed off, persevere and push for tests & referrals to the right person.

Good luck!

[Blackpink101 in reply to JEHSPORT]

Thank you for all the advice. I think keeping a diary will help a lot. I’ll look into all of the things you have mentioned. 💖

[Kalyanin]

I am glad that after all there is a scientific treatment for P T and you are the first person to announce that your PT has been cured. It gives lot of hope that in the near future treatment for other forms of T will be found. Regards.

Kalyanin

[JEHSPORT in reply to Kalyanin]

I hope so 🤞

[ChooseYourUsername]

Thank you for sharing your story. It is great that you have had a positive result and that there are places that are taking PT seriously 👍

Would you mind if I asked if the fistula was diagnosed from your original MRI/MRA report?

[JEHSPORT in reply to ChooseYourUsername]

Nothing showed on MRI but it did show on MRA, then CTv and then I had angiogram which I now believe was more for mapping it out.

[ChooseYourUsername in reply to JEHSPORT]

Thank you

[ShakeelaBTA]

Hello and welcome to the British Tinnitus Association forum.

Do feel free to ask any questions, I hope that you find this a helpful and supportive place to help you manage your tinnitus.

We have some resources that you might like to check out in addition to our home here:

tinnitus.org.uk (information and support details)

takeontinnitus.co.uk (free tinnitus management programme)

Helpline 0800 018 0527 (Monday-Friday 9am-5pm) (outside the UK you can call [phone])

Kind regards

Shakeela