'YOUR EARS': RESEARCH RESULT: 8TH CRANIAL NERVE INVOLVEMENT.

[jinasc]

First of all, thank you to the people who responded to the call on HU and Patient.info to participate in YOUR EARS: RESEARCH PROJECT.

RESULT OF ‘Your Ears’ RESEARCH GCA - 8th cranial nerve involvement.

As a result of a simple question asked at a PMRGCA support group meeting a few years ago about whether patients with GCA had experienced hearing loss, a question was asked on the PMR and GCA forums asking for more information from patients and the charity analysed the replies. The results of that pilot study were such that it was decided to approach the NHS with funding to carry out a proper study which was successful and the results were accepted for publication in early August this year.

For those of us who have some difficulty understanding medical papers (and that includes me). The paragraphs below were prepared by Eileen Harrison BSC (Hons) Physiology & Medical Translator on behalf of M R Smith ex-Chair of PMR & GCAuk North East Support (closed Oct 2018).

It has been reported in the past that cranial nerves may be affected by GCA - we are all familiar with the loss of vision that may be such a devastating feature of GCA when the optic nerve is affected but rarely do we think of the other functions that may be involved. The auditory or eight cranial nerve transmits sound and balance information from the inner ear to the brain. Damage to it may result in hearing loss and balance problems.

Sudden onset deafness had been seen on occasions in the past as a presenting feature in GCA patients. This study aimed to find out how common it is by asking patients to complete a questionnaire about their experiences of deafness, tinnitus, loss of balance and vertigo and to look at the relationship between them and their GCA diagnosis. Two hundred and fifty patients with a PMR diagnosis and 170 with a GCA diagnosis were contacted and in the end 317 patients were recruited. It was found that there was a higher incidence of symptoms which could be related to the parts of the ear concerned with balance and hearing in the GCA patients than those with PMR.

Hearing loss is twice as common in patients with GCA as those with PMR (just over half of GCA patients, just over a quarter of PMR patients). Deafness was found along with other symptoms in just over a third of GCA patients and almost half had hearing loss together with headache. More than half of the patients found the symptoms resolved once they were on steroid treatment.

The conclusion come to is that more than half of patients with GCA have symptoms that relate to the 8th cranial nerve being affected by the vasculitis. Patients seem to be more aware of this association than doctors despite there having been reports in the medical literature in the past so it seems to be important that doctors become more aware that patients may complain of these symptoms in GCA and this may result in earlier diagnosis and better outcomes for patients. Interestingly, such patients may go to the doctor sooner - even before the ESR and CRP blood markers rise because the systemic response has not yet begun. Past studies have been on small numbers of patients - this study is much bigger, meaning the results are statistically meaningful whilst, if anything, underestimating the incidence of ear-related symptoms in GCA.

END

The full report can be found be following this link rdcu.be/bOZXC

Clinical Rheumatology. Original Article:

Patient-reported involvement of the eighth cranial nerve in giant cell arteritis

Vadivelu Saravanan1&Susan Pugmire1&Mavis Smith1&Clive Kelly1

Received: 26 June 2019 /Revised: 29 July 2019 /Accepted: 8 August 2019#The Author(s) 2019

Now a request:

We ask for your help in spreading this information. If you have printer download the paper and take a copy to your Medical Team. Put it in an envelope and next time you have an appointment, take it and give it to them personally and say, “Please take the time to read this in order to help the next person who presents to you with suspected GCA to aid in diagnosis”. .

There is a new support group - PMR GCA UK North East Support Group e:mail pmrgca.org.uk

THANK YOU.

[Hidden]

I have bought a copy home from the AGM PMR we attended today in London. I will definitely be making copies and providing them to the local GP surgeries in my area.

[jinasc in reply to Hidden]

Thank you for doing that..........we really need to try and get the information out. Yes it is a bit unorthodox, but it may just help.

I was one of those who lost hearing and ended up losing 25%. Not my Consultants fault either, just never thought to tell him as I was so anxious about my eye sight and not connecting it either, as it had occurred about a month before and I just thought a snuffle etc.

The two other people told the Consultant they had gone deaf on one side, one recovered full hearing once they had been put on pred within 2 days. The other regained full hearing, but it took 3 weeks.

[Hidden in reply to jinasc]

I'm so sorry you had to suffer because of the lack of information available to both patients and medical providers.

It just highlights the importance to raise awareness and educate the masses!

[jinasc in reply to Hidden]

It's OK, it has never bothered me at all, as though who know me, would echo loudly.

Progress comes slowly with all auto-immune illnesses. But with all the effort that is being made by more research, we will get there in the end.

Thank you.

[Missus835 in reply to jinasc]

I was tentatively diagnosed with GCA in Jan 2022. Had been having so much pressure in my head, which was affecting my ears, the left one in particular, to where I would go mostly deaf. Got no answers from GP who would not enterain the idea that perhaps it was GCA and couldn't reach Rhemy (still cannot). The surgeon who did the biopsy I agreed that this could be GCA or a sign of. I went to dentist, as I was having jaw pain (not while eating), difficulty swallowing, etc. He diagnosed me with acute TMJ/TMD. I was having pain along the hairline area (front forehead) which seem to be referred from the eyebrow area (if I touched lightly along the brow). He said that the jaw muscles run right up into the head. I was fitted for a biteplane. So far it seems to help, but only when it's in and that's 24/7 except when eating. It would seem that PMR or GCA has weekend the jaw muscles.

[SnazzyD]

It’s a tricky one because when my hearing became noticeably impaired plus tinnitus ages before GCA, the test showed a deficit but not enough to alarm the doc, though enough for me to notice. Around diagnosis it took another step change for the worse and hasn’t recovered. There was nothing in my initial presentation that would alert the doc to GCA because there were no other regular symptoms and it wasn’t acute enough to warrant scans etc. When does a doc decide to go about the tricky process of getting that elusive GCA diagnosis for every person over 40 who has hearing loss?

[jinasc in reply to SnazzyD]

That is a problem and we know it. All we can do is try to alert medics. None of them can be expected to know everything.

NHS research is very good and excellently monitored and it will be, as I understand it, presented at the next BSR Conference, where the initial findings were discussed and subsequently the NHS then took it on.

There is no monetary reward in undertaking research of this kind. .

[Jane-s]

Thanks very much for the info. I thought it was just me! We have a support group meeting next week so I’ll mention the 8 th cranial nerve involvement to my fellow sufferers

[MrsNails]

jinasc - Now in FAQ as requested. Thanks x

[jinasc in reply to MrsNails]

Thank you. It saves me from dragging it up from my computer.

Hope y ou noticed the neck pain question, I bet you have🤔

[MrsNails in reply to jinasc]

Haven’t re read it but l will shortly - just prepping for the carpet man!

[Bedwell]

I’ve had muffled ears for the last 3: weeks. Thought it was wax but none found. Cranial osteopath says infection. On 12.5 pred and had Covid diagnosed beginning September . Starting drops from GP but so far no improvement after 3 days. Anyone else experienced this?

[DorsetLady PMRGCAuk volunteer in reply to Bedwell]

Might get more replies if you raise this as a new post….unless people have saved this post (which is 5 years old) many probably won’t see your question.

[Bedwell in reply to DorsetLady]

Oh dear! Thanks. Still haven’t found my way round this site properly. Brain fog!

[Bedwell in reply to DorsetLady]

Have posted I think!!!!

[DorsetLady PMRGCAuk volunteer in reply to Bedwell]

Don’t worry, if you did a search it probably came up with this post….And yes you have posted successfully…hope you get some answers.

[Bedwell in reply to DorsetLady]

Thanks! Gosh you are on the ball!!!

[DorsetLady PMRGCAuk volunteer in reply to Bedwell]

😊

[PMRpro Ambassador in reply to Bedwell]

She does her best - she beat me to it ...

[Cally-Jay]

My hearing was effected after being diagnosed with GCA , consultant wasn’t concerned when I asked if it was connected, GP advised me to see an Audiologist who confirmed hearing loss in both ears resulting in me having to wear hearing aides, 5 months on I’m still wearing them hearing still impaired, when I saw my consultant next I told him I’d googled hearing loss and the association with GCA and gave him a letter from my Audiologist, he still didn’t seem concerned!

[DorsetLady PMRGCAuk volunteer in reply to Cally-Jay]

Well he should be taking an interest….

[Cally-Jay in reply to DorsetLady]

I’ve honestly learned so much in the couple of days I’ve been on this support group, I had never heard of GCA and mainly did my own homework regarding it as consultant is not very approachable and tends to dismiss any questions myself and daughter have, I’ve learned on here about the 8th cranial nerve ( find it strange a rheumatologist couldn’t see any relevance ) I’ve just ordered the book a few have recommended hopefully will educate me more 😊

[jinasc in reply to Cally-Jay]

Download and print off and take copy to him. Put it in an envelope and as you are leaving just say, you might like to read this...............it came out just before Covid and you may have missed it.

PS Well done you for exploring the FAQ's/

[Cally-Jay in reply to jinasc]

I love that response I hand it to him and run for the door ( though in my case I stumble for the door ) Thanj you 😊

[PMRpro Ambassador in reply to Cally-Jay]

Like the numpties here told that the anticoag I am on must be taken 2 hours away from the anti-arrythmia drug they had given me or the level rises and increases the risk of a serious bleeding event. OH had had a similar problem - had been taking 2 drugs at the same time. The anti-coag reached 10 times the therapeutic level in the blood. Nearly killed him - luckily the surgeons and the head of the lab here were more concerned about such things!