To beg for advice on recurrent sinusitis

[FireplaceChair]

Absolutely desperate and hoping there is someone on here with some expertise. Have had recurrent sinusitis for the past few years and it's completely debilitating. All the classic symptoms; fever, exhaustion, terrible pain, masses of technicolor mucus, aches, chills....always starts after a cold, and lasts about six weeks. I am sick ALL the time. Even when I don't have an active infection, my left sinus feels tight and narrow, like I'm not getting enough oxygen and I'm getting terrible sleep disturbance and brain fog because I can't breathe properly at night. I have children with disabilities, and cannot care for them because every cold becomes a full-on bed-ridden infection. My partner is looking after me plus our kids. I think he's going to lose his job if we carry on like this. My life - our life - is in tatters.

Sought a referral two years ago, after trying to manage with saline rinse and nasal steroids. I'd read about something called balloon sinuplasty which sounded like exactly what I needed. After seven months was seen by an ENT who did an endoscopy and said one sinus was blocked and that I would need surgery (yay). I was sent for a CT scan (which took place between infections) but then discovered that I'd been discharged because the scan was "clear". The instruction sent to my GP was to carry on with steroids, which I'd already explained did not work for me. I started the referral process again and finally got seen by another ENT Dr last week, where I was again told that because my scan was clear there was basically nothing they would do and once again told to try steroids, which I know will not help.

So is that it? Is this my life now? In addition to being desperate I'm also just a bit confused. My understanding was that the CT scan was just being done to check if I had a deviated septum or any other abnormality that would prohibit balloon sinuplasty and necessitate full surgery. Not to verify that I needed treatment at all. And sources on the web indeed seem to suggest that you can have balloon sinuplasty on the basis of symptoms and without an abnormal CT scan.

Are these Drs following some guidelines that I can't find? Are they rationing care? Has anyone here had balloon sinuplasty without demonstrating any abnormality on a scan? Or otherwise resolved their sinusitis without using steroids? Please help, I'm completely desperate here and feel like my life is basically over.

YANBU - There is probably a solution

YABU - This is your life now, suck it up

Ugh, why do they make us fight so hard?? The second ENT I saw actually suggested that my symptoms might be "mood" related. I mean...no. Absolutely not.

I had endless bouts of sinusitis, and eventually had my sinuses drained and widened 20 years ago. 24-hours in hospital, and no problems since.

Was that balloon sinuplasty? And how did you qualify to get it done? Was it just symptoms based?

I have chronic sinusitis and sinus polyps diagnosed via mri.

I was prescribed Avamys steroid spray which I took daily for 6 months. Totally calmed down sinuses and If they start to flare up I go back on the spray. could be worth a try?

also think dairy / alcohol cause me inflammation which makes it worse. You could try a low inflammatory diet too?

Also consultant wrote to GP and said I should be given antibiotics straight away rather than made to wait weeks.

I feel your pain! Infected sinuses are awful.

About 15 years ago I had a CT scan which showed complete opacification on one side, partial on the other. And a deviation on my septum.

Consultant suggested bilateral FESS (frontal endoscopic sinus surgery) and septoplasty.

Now if i feel them going i tend to take a course of nasal steroid spray and thats enough to fight it off.

@FireplaceChair I went to a specific allergy clinic last year and they did a full investigation that included a camera up my nose to investigate while I looked at the screen. I could clearly see the sinus opening on one side was tiny and the walls were all incredibly swollen. The doctor pointed out that the tissue was almost white because it wasn't getting enough blood supply due to the swelling over years. She also said the ENT's camera wouldn't have gone as far back as theirs and that's why it wouldn't have been caught before. I was the exact same as you, I could just feel like the opening was tiny. For me the (unknown) allergy was also set off by wine and some flower pollens because I was living constantly in a state of allergic reaction and the smallest thing set me off with headaches for days. It was such a relief being told I wasn't mad!

I'm in Ireland and went to Allergy Ireland if you want to look at their site and see what they do to find something similar local to you.

@ProudHag
That's really interesting. The second ENT used a camera that didn't go as far down my nose. Which might explain why he didn't find anything.

I was also going to suggest having your adenoids and tonsils checked. My kid is dealing with the same and we are waiting for them to hopefully outgrow the large adenoids. If not we do surgery.

I used to have loads of sinus issues/chest infections when I had an impacted wisdom tooth - had it removed and not a problem since.

Sinus issues are soo debilitating

My experience echoes a PP who found cutting out sugar and dairy to have a remarkable effect at freeing up the sinuses

Mine was complicated by steroid use initially helping but then becoming ineffective and finally (sic) contributing to making the situation worse.

Surprisingly, it seems to be the sugar in both sugar and dairy that contributes to the inflammation. Butter,cheese and creme are fine for me and cause no problem, while milk is quite 'sugary' so feeds the bugs and makes the inflammation so much worse.

It's difficult to give any credit to these lower intervention measures when you have the lingering doubt that there is a surgical intervention that could actually help. In my experience though , the least intervention that can deliver the result you want is the best one for you. The side effects of lots of medical interventions, drugs and surgery, can often make things worse even before you consider he risks for something actually going wrong.

It might feel as if medics are just trying to save themselves the bother of doing an intervention. In fact, if they are reluctant it's almost always because they think the risks outweigh the benefits but don't want to explain all the things that might go wrong.

Thanks very much for this info. Multiple people have said this now, so I'll definitely be taking it up with a dentist (assuming I can ever get to see one...).

Yep, I'd say it was your wisdom tooth too. Dentist told me that I'd always have issues with this as roof of mouth is higher than the sinus opening, so infection lurks there. Had all my wisdom teeth out, even the ones not erupted and much better.

Also get an air purifier and watch for air pollution. Smoke, new furniture, all sorts of things cause air pollution.

In the main I agree with you. I used otc steroid spray for around a year before I was diagnosed with my dust mite allergy. I didn't really realize what it was and I'm pretty sure there was a rebound effect that may ultimately have contributed to the permanent narrowing of my sinuses.

Like yourself I have a preference for minimal intervention in general, something I've learned the hard way with another condition. So I'll definitely be trying some of the low impact stuff first and see how that goes.

In my heart of hearts though, I suspect I will need more than that. Very happy to be wrong, but the fact that it is so much worse on one side, for example, suggests that there's some kind of functional/physiological issue, rather than inflammation alone. And I'm also confused about why the first ENT was adamant that I'd need surgery, as I've never really had an explanation.