Last week I was told there is a lump in my nose on an x-ray from 2007. Thursday I see ENT.
I'm guessing that in the intervening years, the lump has grown (noisy breathing, limited air flow, deteriorating sense of taste and smell, increasing purulence, pressure on the bridge of nose, loud snoring, mild obstructive sleep apnea, collapsing nose and more). The orthodontist (! ⭐️⭐️⭐️⭐️⭐️) said it's calcified inflammation, and it was perfectly oval, crystalline so it will grow, like limescale or plaque (or lime mortar...never use cement pointing on a stone building 😁)...typical of granulamatosis?
But a lump's a lump so it could be an irregular mass by now..
The ENT appt came on the back of a suggestion of vasculitis, Rheumy leaving ENT to decide whether to biopsy...which could cause my nose to fully collapse EEK!!!
If was referred to a V specialist, it would a different Board (there being none locally), and the waiting time clock would start over...so it'd be 12 weeks.
HOWEVER, with C-potential now rearing its ugly head, would I be on the fast-track 62-day protocol (Scotland) for investigations like imaging?? Then I could dodge the biopsy 😀...
I read 50% of urgent 2-week referrals turn out not to be cancer, just GPs aren't in the position to rule it out.
It's been 14 years since my first ENT referral (I saw a 'do nothing' consultant then 🤡) and frequent GP nose-related consultations since 2012 🤡🤡🤡🤡🤡, so I'm weary of waits and ever sleep-deprived...I started looking up prosthetic noses last night and decided a latex Kristin Scott Thomas job would be just the ticket, and be rid of this useless hooter...👃 The trick is to keep breathing! xxx
* novel by Janice Galloway, a painful read with a good end
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Thank you Honeybug! What an amazingly fast response from the other side of the world! 😘😘😘 I've been living with a non-functioning nose since 1974 😵so I can't Wait for some action! I saw this ENT consultant 2015 - my GP decided not to reply to his letter 😡- and he's kind and knowledgeable, suggesting a biopsy back then, so here's hoping! 🤞🤞🤞🤞🌺 🌸 🌼
More than just several times over the years non urgent GP referrals have resulted in slow boat hospital dept appts @ which the consultant went ballistic, saying that persistent signs & symptons like mine should’ve resulted in referal years ago, and that i certainly should've had an urgent referral at this point
For what it’s worth, my experiences make me confident in thinking you should be referred for tertiary care & seen urgently about this by all these disciplines & the consultants should all liaise about you:
Rheumatology lupus & vasculitis experts
ENT immune dysfunction & connective tissue disorder experts
Kirstin has the most beautiful feminine bones and cartilage 🤩...I strayed into gender reassignment protocols yesterday 🕵️♀️ while looking up aesthetic surgery vs routine treatment and found that treatment/surgery offered includes rhinoplasty AND facial bone reduction (as well as 300-400 hours of facial hair removal by electrolysis...I could do with some of that!!! 🧔🏽), so if I decided to identify as the XX I was born rather the ehm androgynous I've been (I never wear a skirt 🤷♀️), then I could have my eye sockets chiselled to look more like her........but I digress 🤤
I'm twitchy about this appointment, in fear of just acquiescing if he says he'll biopsy then and there, but that's Very Very useful advice...I'm not sure Scotland has tertiary care 🤦♀️ but I did come across a list of illnesses qualifying for referral to England...I'm off to find it again!
Hoping your Azithro did the business with no ill effects, thanks for keeping me going..I'm still breathing! 😘😘😘 mo xxx
😆 when i feast on the sight of KST, i can’t help identifying with Mr Blobby 🤷🏼♀️😉😆
Thanks for asking: azithro is postponed until october at the earliest: recovery from MRE bowel cleanse hyperreaction is going slowly as usual, + i have a slew of clinic appts this & next week (fri gastro nutritiin & dietetics, then next week see gastro for MRE report, next GP for 30min review, then lupus chief @ rheumatology, then ophthalmology cornea expert) and feel like i’m prepping for univ Finals.
Meanwhile, have been thinking about multidiscipline approaches & cases like ours, cause while getting ready for my ophth guy, i remembered that several years ago Right From The Get Go, his prescrip Ikervis Cyclosporine eye drops HUGELY damped down the stubborn chronic rhinosinusitis signs&symptoms that immunology’s constant daily antibiotics hadn’t quite conquered...of course: eye drops slide into the nasal passage/sinuses even though i use a finger to plug the duct between all these....i’d forgotten to mention this to my immunology chief when he referred me to his ENT colleague at the grand hospital in london + prescribed the azithro for this....🐒 surely my rheumy will also be interested in this overlapping disciplines “situation” involving pos multi-organ response to this powerful immunosuppression med fir ocular sjogrens
That's a LOT of swatting to do, and sometimes you ARE made to feel you only get one chance at it 🙄 but I'm sure you'll pass with flying colours! I imagine your Rheumy will be jumping out his chair when he hears of Cyclosporine's wider GREAT results...your lucky star 💫 (you!?) has your consultants lined up in the right order 🤩
🤞Here's hoping the nutritionist can help you get over the hyperreaction hump as a starter for 10.
It's just awful having to see so many doctors when you're so ill...🤔🤗😘 😘 mo xxx
Thanks 🤗...it’s crazy, but even as ill as i am now (eg on EEN due to intestinal failure etc), i feel better than i have since i was a youngster cause all my meds truly madly deeply help that much...so, now, in my eyes anyway 😉, all my long-time medics are stars ⭐️, and i come v close to loving seeing them 🤩...but 🤷🏼♀️ i do feel there is no real “security” in any of these professional health system relationships, so it’s all v much a “1 day @ a time” thing🙄😬😘🍀
...And you too make brave jokes about something so serious and hard for me to get my head around Eekt that I don’t know whether to laugh or weep. To me your problem with nasal collapse screams Wegener's Granulomatosis (or GPA) but maybe I’ve just been researching rheumatic diseases for too long?!
Have you tried phoning the Vasculitis UK helpline at all to ask about this biopsy or phoning Arthritis Research UK as asking to speak to their Vasculitis helpline person yet?
I was told Addenbrookes is the lead place to go for expertise on Vasculitis in the UK - but really for me getting an out of Scotland referral for opinion on Vasculitis would be as likely as the possibility of a smooth Brexit taking place when the scary day arrives.
Failing this Professor Neil Basu at Aberdeen Royal Infirmary is the Scottish Vasculitis expert I believe and he’s extremely personable I found. Xx
A simple fact that if I hadn't started posting here, and hadn't had such BRILLIANT encouraging replies from Coco and you all 😍😍😍😍😍, I'd have crumpled and now be hopelessly and helplessly heavily sedated by my GP while physically deteriorating. Thank You All xxxx
...the trick is to keep breathing!
It was relapsing chondritis that started me on my SLE diagnosis journey - a referral to the sleep clinic 2015 led me to look up the lead consultant, who had written a paper on the first case of RP causing OSA, and a google of RP produce the saddle nose deformity, EEK!. The sleep clinic didn't investigate AID 🙃🤭🤓 but after the student was who tasked with giving me the polysomnography results - AHI 6.7, below the threshold for NHS treatment - had done shouting at me, I asked about RP so she sighed, ordered the immunology bloods and wrote in her letter she had told me it was very unlikely 🤡 🤥🐖🤡 🤥🐖🤡 🤥🐖
When the ANA came back positive - a pencil note added to the clinical letter to my GP firmly recommending I see a psychologist 🦕 🦖🦕🦖 - I looked up GPA too.
I set RP/GPA aside after the SLE diagnosis 2015, then the rhinoplaster in June was the first medic to say my chronic sinus (+nasal deformity) could be caused by inflammatory disease, prompted by my concern that nasal reconstruction would dodgy 👎🏻 if there's an infection lurking.
So Rheumy referred me to local ENT again (Thursday) as nasal reconstruction could be some time away if the decision is made I'm eligible on the Adult Exceptional Aesthetics pathway - 😡still asking why it's not routine treatment - as that would have been the time to biopsy.
In short 😂😂😂 that's great advice to call the helplines, Amy on VUK suggested that too but I've been so 😱. I'm thinking:
1. no biopsy until inflammation markers are repeated (ok a year ago)
2. ask if biopsy of the lump only might cause septal collapse (to rule out C)
3. ask for a referral to a vasculitis specialist (thanks for Dr Basu, I found a Rheumy/V team at Ninewells too, Edinburgh has V within nephrology) - someone said experts don't biopsy anywhere because it can cause further damage, they diagnosis by history and manifestations (thanks again Amy! xxx)
and I'll see what the helplines say!
Thanks! 💐 🌷 🌹 🥀 🌺 🌸 🌼xxxx
PS the KST latex nose wasn't a joke! 🤩 If I had a selection of fake noses, I could get a job as a Russian spy!!! 👨😂😂😂
No not a joke of course! I just love your darkly humorous take on something so clearly significant and serious and on the nhs neglect you’ve experienced to date.
I have to say that so far Rheumatology/ CTD experience at Ninewells has been exemplary for me. The VUK helpline were obviously less impressed by Scottish provision for those with Vasculitis though. But maybe this is due to Anglo-centric tendencies for all the English based charities representing rheumatic diseases. Perhaps Scotland is just different in its approach to rare conditions rather than worse? Certainly I feel my rheum is very on the ball about all rheumatic diseases including Sjögren’s and I don’t feel aware of this need for specialists in individual rheumatic diseases in the way that people here often speak about ie need for rheum who specialises in Lupus as opposed to other rheumatic diseases. I’m so aware of the overlapping rheumatic diseases that I cannot see why we in UK don’t train more general rheumatologists and require them to have a far more extensive knowledge and understanding of ALL rheumatic diseases - or at least consult closely with those who do.
For myself I struggle to find my way around fatigue to even manage a few days with my husband in Dublin - let alone have to travel out of area all the way from north Fife to Cambridgeshire and back. Let alone if this incurs the disapproval of my local NHS team - who in my case are proving pretty supportive now I’ve settled here for good. Xx
Ps just looked him up and it seems he’s now in Glasgow - which makes sense bearing in mind that it’s the official research centre for rheumatic diseases: researchgate.net/profile/Ne...
I admire your sense of humour in such worrying circumstances. So sorry to read of a lump that wasn't picked up! Why not? . It's apalling and sincerely hope it's not the C word!. Best of luck for your ENT appt hopefully soon and keep us posted. Xx
Thanks Misty! 😗 I had endoscopy a couple of times but I guess they were checking the health of the membranes. The orthodontist said it would be visible on camera. The lump might be from when I broke my nose, but I reckon it's best to go to the appt open to all possibilities. My healthcare has been a melodramatic tragi-comedy, so I just keep laughing! 😋 (Goes out to the sound of 'Always look on the bright side of life...') mo xxx 😁
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Lupus SLE and APS breathing issue
Still short of breath!
Dr Referring me to Rhematologist. Keeps mentioning Lupus but I have no symptoms
I keep missing work and feel really bad.
Keeping Fit
