Can anyone pls offer any advice on new treatments / management of really chronic sinusitis ?

[fakeblondie]

My dd who is just embarking on her A levels is really sufferring and it's now affecting her everyday life. She is once again taking exams which she feels she has been unable to properly study for as has spent another 6 weeks dizzy in pain and running high temps.
we have tried most things and really tried them. Mean some days it's like a hops here. We do the steroid nasal spray the decongestant spray the sedated the antibiotic when required the paracetamol brufen for pain and temp and regular steam . She has been in hospital twice now needing IV anyibiotics as it went up into her head and eyes causing something called periorbital cellulitis and she was very poorly. She was in hospital for 9 days lost the vision in one eye and the pain is unbearable. She was then off school for 3 months. That was a few years ago but has left her suffering chronically and sometimes acutely requiring quick treatment with high dose antibiotics. I only managed to keep her out of hospital over Christmas by the skin of my teeth so to speak, because I am a nurse and managed to plead the out of hours doc to try oral antibiotics and gave her a double dose ! She was better within hours .
my main worry is seeing her so stressed because she wants to do medicine and can't afford to be like this. I know its not the end of the world but she is 17 and puts a lot of pressure on herself.
is there anything I can do that we,ve not tried ?
I'll make an appt to see GP and ask for a referral back to ENt consultant but that will take weeks . we need to try something in the meantime.
ould be interested to hear from anyone who has considered or had surgery ?
Sorry it's long.
I hate seeing her like this and justvwant to hug her and make it all better x

Just wanted to say you poor things this sounds awful I have chronic sinusitis but not as bad as this, never hospitalised! nasal spray is helpful at keeping it at bay but I do worry I take it ALL the time and can't stop - your poor DD, I'm sorry I don't have any advice except just to check she is not having crafty fags (I'm sure she wouldn't inflict this on herself however!)

Can you see ENT specialist privately to speed up process whilst on NHS list? I guess a consultant appointment is about £250? My experience (for a different problem) is I saw NHS consultant privately at BUPA for consultation was then recommended for treatment via NHS, still had to wait for treatment but saved the first couple of months just waiting to see the consultant. Sorry I know this is not helpful if cost is prohibitive. I do hope you get more help soon

I used to sit holding the side of my chair at work as I felt I was about to fall off, it got so bad. I was on anti-biotics nearly every 3 or 4 weeks, and the attacks were totally unrelated to whether or not I'd had a cold.

Eventually, I had a sinus ventilation operation. The scans I'd had showed that the main sinus affected was the one above the eyes, and one side was smaller than the other - that was the side that was worse. I had 2 years free of attacks, and then had a pregnancy that didn't take and the first attack at the same time.

I now live on the edge of 2 weather systems - continental and atlantic, and if the weather pressure changes dramatically can get attacks, but thankfully nothing as bad as before the operation which is now 17 years ago. The pharmacists refer to it as climatic sinusitis.

Acetyl-cysteine helps - it's back on prescription again after being off the list for some years - it's mucolytic so thins the gunge, allowing drainage before infection sets in. You can also buy 100 x 600mg capsules from Holland and Barrett for about £10 as NAC which is a standard daily dose. If you go to France, you can buy it over the counter in a chemist - I used to buy 10 boxes on holiday! Also available in France is a nasal spray that contains geranium oil called Uvanol - I hate the smell of geranium oil, but it does work. There's also steam inhalation with menthol crystals in a bowl of boiling water.

In France they also prescribe low doses of steroids (prednisolone from memory) that melt under the tongue and they act within 24 hours at the same time as antibiotics, but much faster.

Finally, according to a book I read from the US, chronic sinusitis can be one of the many symptoms indicating an under-active thyroid gland, so that could be worth looking at, too.

Good luck

Your poor Dd!
Do you have a fast access ENT community specialty clinic? Having suffered for decades I was surprised by the speed of referral through the community specialist system, and had scans tests and put on surgery list within 4 months of seeing my GP. I ended up going privately due to NHS cancellation of my surgery but that is another story. Sometime after surgery I was prescribed antibiotics in accordance with biopsy/lab findings. Functional endoscopic sinus surgery is now available in most NHS areas because it is so successful. I had seen ENT specialists in the past and got nowhere so was surprised to be taken seriously! It is still early days for me (it will take a few more months for everything to settle) but I have not had a proper sinus infection since.

She needs to see ENT, asap - so per other posters, I'd make that your focus.

I've had grotty sinuses for years, prob since I was a child, although at first I did all the tonsils/grommets malarkey (well, it was the 80's...). Sinus prob weren't identified as the problem until I was 11/12? Once they were, I had a while with steroids (can't really remember which ones), but then was told that surgery was the next point of call. I had a relatively extensive surgery at 15 IIRC - 'all' my sinuses were blocked, the holes were too small. It was ok, cataclysmic bruising, but bearable pain wise! But surgical treatment has come on leaps and bounds since then, it's more refined now.

It bought me years of relief. But the surgery does not necessarily last forever. My sinuses are banjaxed again now, and I've even had a couple of bouts of peri-orbital cellulitis (as in your OP). Annoyed as sinus connection was not mentioned the 1st time... Anyway, I feel like shite again now, all day every day. 5 or 6 different types of headache, all at once; constant wooly head; poor sleep; searing pain if I lean forward, etc etc. As well as the non-painful things like: face sometimes looks freakishly puffy, I'm worried about bad breath again; blocked nose that makes my voice sound stupid... It's no way for me, a 35 yo to feel and it's absolutely not how she should be spending her teenage years, poor thing.

I need to go back to see drs, but putting it off as (with dc), not sure when I'd have 'time' for surgery. Well, I'm putting it off for lots of reasons, you know how it is! But these are critical years for her, and she will do so much better once she's back on par. I'd make a GP appt, and REALLY lay it on the line. And if no deal, I'd see the private fee as a great investment.
Best of luck.

I felt quite cross when my CT scan showed structual problems which were likely longstanding and probably the cause of lifethreatening ill health too.
However FESS is much less traumatic and more successful than earlier sinus drainage surgery (Hazel) so perhaps waiting a few decades was lucky too.
The newish community specialist team system is shortened to CATS here but it may be different where you live.
I use sterimar saline spray but only since the surgery (which opened up the drainage holes amongst other things) has I been able to use it properly!