CAROTID ARTERY BRUITS

[Hev1964]

Rheumatologist discovered bruits (whooshing sounds!) on the right carotid artery at last weeks meeting. I wasn’t expecting that at all, especially as I wasn’t feeling awful and he managed to find my missing temporal pulse so was happy with that. He’s referring me for scan of carotid arteries now before starting Actemra after a trial of Leflunomide - (it didn’t do much except make my hair fall out by the handful)! Has anyone else dealt with carotid artery issues/narrowing caused by gca inflammation and not plaque? Would like to understand more about it xx

[Maisie1958]

Morning Hev1964 - no advice but just wanted to say I will follow this post as just found out on Tuesday I have a left sided supra clavicular bruit -being investigated for Pulsatile Tinnitus- - bizarrely right sided. I have been treated with Pred for PMR since May 2015, did have the odd episode of jaw pain and scalp tenderness too but been on low doses of pred only for ages. I’ve had fairly extensive tests for the whooshing in my right ear, cardiologist found bruit but is unsure if significant ( heart echo, ecg etc fine) but need Doppler of carotids-poss MRI/ MRA of neck, so will let you know outcome. I’ve not had any CVS episodes as far as I know unlike you. I have reread your posts tonight.

Sorry I don’t have any information but hopefully someone on the forum will have. Just wanted to let you know someone else was awake at this time, googling carotid disease and vasculitis!

All the best x

[Hev1964 in reply to Maisie1958]

aw thank you so much Maisie for replying. It’s always good to know someone is hearing you that’s for sure. Yes, am waiting for the ultrasound too but it all takes an age up here! Found some interesting links about some symptoms of gca that link to carotid arter inflammation. In fact I’ve had hoarseness for months now (thyroid ruled out as cause) and discovered that if the EXTERNAL carotid artery is inflamed/semi blocked it can be a cause for hoarseness and, if my memory serves me right. can affect the hearing - somehow - cannot remember suggested process sorry but if it can affect throat then feasible it could affect ears that way with them all being linked! I could have remembered this wrong but don’t think so - brain fog and all that! Yes, would love to hear of any progress/news you have moving forward and I will keep you up to date from my end - we may be helpful to one another! Thank you again! Take care 💕🌼

Xx

[Maisie1958 in reply to Hev1964]

Hi -in the months before diagnosis of PMR and for ages after I had a funny hoarse throat, was feeling so awful with tiredness and stiffness it didn’t really register. That’s interesting-thank you. I had been feeling great recently even with the Pulsatile tinnitus-have had mri/mra of head sanctioned by ENT chap, nad but referred to cardiologist, heart fine but now need neck looking at by vascular person-I’m not a giraffe so had hoped the nice heart man could have just moved his u/s up a few more inches. He at least seemed to know about PMR/GCA & vasculitis, he did say that best to check out carotid/ neck bruits but not all were significant-so here’s hoping for the both of us!

Will keep in touch- all the best x

[PMRpro Ambassador in reply to Maisie1958]

I had that too with "just" PMR and the general feeling now is that I probably had LVV (large vessel vasculitis). But I have had my carotids scanned a couple of times due to something else - and they are clean as a whistle. No bruits though.

[Maisie1958 in reply to PMRpro]

Thank you, PMRpro. I did have episodes of scalp and jaw pain early on too but didn’t know any better then so just thought “thats weird” and prednisolone helped.

The cardiologist seemed clued up about LVV -seemed to think I should have had chest X-ray previously but I’m not sure I want to know about aortic aneurysms etc yet! My iPad safari /search facility is depressing-it used to be just M&S, QVC, John Lewis and YouTube videos of cute guinea pigs. Now I have to keep clearing it - it looks like a mad woman is using it otherwise. Anyway will see what if anything comes of carotid scan.

Thank you x

[Hev1964 in reply to PMRpro]

Thanks PMRPro. I had a heart ultrasound a few year ago and the guy said that my blood flow was fast, “rushing along” but nothing else noted! No mention of plaques or anything like that. Perhaps they will change my diagnosis as we go on if they discover anything else, to LV V or similar, who knows. Will wait for carotid ultrasound meantime and see what, if any, joys that brings! xx

[Maisie1958]

youtu.be/9B6u6LUrtYw(Not working as expected?)

If you are still awake this is a reassuring YouTube link, seems quite sensible to me.You can see what I’ve been googling in my spare time! X

[Hev1964 in reply to Maisie1958]

thank you that’s interesting! Like those guys never seen them before! Xx

[SheffieldJane]

I had a scan of the Aortic Valve because of a consistently different reading of blood pressure between arms. Vasculitis can strike there. Fortunately for me, nothing untoward was found. I hope that you are equally lucky. The technician talked me through it and it was actually an interesting, positive experience, in the end.

[Grants148]

I have a pulse like rushing noise in my right ear,l have mentioned this to doctors at my surgery but they just say that nothing can be done for tinnitus.l know that it affects my pulse,but they never send me for any tests at the hospital.l have been to cardiology and ecg,s and heart monitors seem O K.,but l am never referred to any other specialist.At least l know that l am not alone in having this problem.l hope everything goes well for you.

[Maisie1958 in reply to Grants148]

Hello Grants148 -I think it depends on how willing your GP is to refer you but there can be a cause for Pulsatile Tinnitus which possibly could be sorted and some things should be ruled out. You’ve had cardiology tests so that’s good. Not always wise to google stuff but the British Tinnitus society has a section on PT and whooshers.com has loads of information-perhaps too much! There is a section on how how it should be investigated-I tried posting the link but can’t get it to work.

I had PT 30 years ago when pregnant-self limiting with the baby! somehow don’t think that’s the cause of it now. Only had it 3 months now. I’m in the middle of loads of tests -all clear so far-which is good-I guess but still have the annoying whooshing my right ear! May well just have to live with it.

Will let you know if I get any answers.

Hope you’re doing well-all the best.

[Grants148]

Thankyou Maisie 1958 for your reply,l have given up asking my GP for any more help with this and have been advised by a friend who has worked for the NHS to go straight to A &E next time l experience the irregular beats.l hope that your tests continue to be - all clear.l was told by a doctor last week that nothing can be done for tinnitus and not to be so anxious ,but l find it all rather scary anyway.All the best Maisie.

[Maisie1958 in reply to Grants148]

Morning Grants148 -luckily we seem to have only one unhelpful GP at our local Practice, the rest are lovely. I feel a bit of a fraud as I feel ok apart from having regular whoosh, whoosh and some mild hearing loss in that ear. It must be very unsettling to experience irregular beats. Going to A&E if it happens again sounds a good plan, even if all fine it would put your mind at rest and maybe trigger your GP to do something if they realise how it impacts on you. The ENT and heart guys I saw were surprised no blood tests for thyroid etc were done and other straightforward tests! Mind you can’t be easy for GPs these days either.

Thank you. It does help to know others are going through similar things. Hope all goes well x

[Grants148]

Thanks Maisie,l did have rather a meltdown last week and l think the locum l saw thought l was being paranoid,and having to increase the Pred .recently has not helped .lt was even suggested that l may have imagined the erratic pulse,which certainly was not true.l agree that there is a lot of pressure on doctors,l have not had a blood test for a long time,l used to have one every six months.All the best Maisie,have a lovely weekend.x