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Any ENT people out there? Chronic sinusitis

(19 Posts)
LEMmingaround Sat 22-Feb-14 22:17:12

My mum has chronic sinusitis. She has a ENT appointment on wednesday. Now my mum is difficult to say the very least (a whole other set of threads!) but she had become increasingly distressed by being unable to breathe through her nose and the pressure in her ears. She has had to be given diazepam to help her this weekend as she has been quite hysterical. although she refused to take it today because its "drugs"

She is on longterm steroid replacement therapy (hydrocortisone and fluourinef) and is hypertensive so she cannot take sudofed type remedies.

She has tried the steroidal nasal sprays but only perservered for them for less than a week because she feels it makes it worse.

She has tried olbas oil etc, inhalations and vicks cream - nothing working.

It is the pressure in her ears that is causing her the most distress.

What questions should i be asking when i see the ENT specialist? How can i stress that she is at the end of her tether (as am i!) and tht it is affecting her mental health and can they please make an urgent referral for treatment? Will she benefit from surgery? how long will it take? It said on the letter 18 weeks and i don't think she can cope for that period of time.

Also, I have been refering to dr google (which i tend to avoid) and none of the information regarding sinusitis that i have looked at refers to it affecting the ears, even though it makes sense to me that this would do this and the GP is of the same opinion.

LEMmingaround Sat 22-Feb-14 22:42:49

anyone?

LEMmingaround Sat 22-Feb-14 22:48:11

ah, it seems everyone is drunk smile will try again in the morning

MrsRTea Sat 22-Feb-14 22:57:56

LEM, I know there are many MNers who hate complementary medicine with a passion, but ear candling and massage really help. Especially specific sinus massage. In fact on YouTube you can see lots of demos of DIY sinus massage.

Also, a neti pot helps me - again YouTube shows you how to use it the first time. Or there are lots of threads about neti pots archived on MN!

I sympathise with your mum. It is bloody bloody awful and makes you feel appalling. I've read that surgery doesn't always work. Another approach is to cut out dairy. Apparently it works for many.

Selks Sat 22-Feb-14 22:59:51

Sorry I can't comment on many of the questions that you ask, but I suffer from chronic sinusitis/rhinitis myself, and use a steroid nasal spray long term. It does keep the worst of the symptoms at bay but it needs to be done every day and long term for it to have an effect.
The other thing that I find really beneficial is steam inhaling. You breathe steam in through your nose for five minutes three or four times a day, and after a couple of days it loosens up blocked sinuses and eases irritated membranes - it's particularly useful if I'm having a major flare up after having a cold etc. You use an inhaler cup such as this. Your Mum should give this a go - it might help her sanity a little (not meaning to make light - I know how these problems can get you down).

Selks Sat 22-Feb-14 23:01:44

Ear candling is a load of hocus claptrap if you ask me. I tried it and it gave me earache, reading up on it afterwards there are countless descriptions of it producing no positive effect and even being dangerous.

Selks Sat 22-Feb-14 23:02:38

Neti pots on the other hand do sound promising, not tried them myself but if I could figure out how to use them I'd give it a go.

MrsRTea Sat 22-Feb-14 23:09:36

Try YouTube, Selks. I've just ordered that cup you linked to. I'm sick of bowls and towels. smile

member Sat 22-Feb-14 23:27:34

Was coming on to recommend nasal irrigation/washing.

This was recommended to my mum when she had nasal polyps removed a few years ago. Nasal polyps tend to arise through chronic rhinitis/allergy & the irrigation washes a lot of irritants away as well as general gunk.

It may not be polyps that are causing problems for your mum, but nasal irrigation can help other sinus/ congestion problems. As it is something recommended by ENT, being able to say she has tried that (in combination with the oral steroids she takes), should hopefully bump her up priority- wise.

You can use neti pots referred to or there are syringey type things. My mum uses a saline solution but there are specific pre-made rinsed also available. Amazon sell this stuff so she may be able to start before Wednesday.

You can get me to pots as referred to up thread

MrsRTea Sat 22-Feb-14 23:36:40

Another long-term tip - try to keep your head warm when you go out. All the bits where there are sinuses (everywhere). This means being ridiculously hatted and scarfed, but does seem to help.

RockinD Sun 23-Feb-14 10:27:46

I suffered for twenty odd years until I discovered aromatherapy. I have used various oil burners and now have one of these:

www.allinone.co.uk/ecommerce/search/Made-By-Zen-Ew010w-Soto-White.aspx?gclid=CLqivOGE4rwCFSQXwwodxRIACg

MrsRTea Sun 23-Feb-14 11:29:20

REally? Does it make a significant difference? What oils do you use?

I put oils in the bath etc but don't use a burner.

MrsRTea Sun 23-Feb-14 15:32:49

Here's a pdf - rather technical - have yet to read it:

www.rhinologyjournal.com/abstract.php?id=646

DiamondsAndRust Sun 23-Feb-14 19:20:52

I've lived with chronic sinusitis for a decade now, and know what an utter nightmare if can be. It's very debilitating at times - I've had near-constant pain and every minor cold I catch (which, as a teacher working with small children, is many!) turns into a full-blown sinus infection. Even without the pain, the internal facial pressure causes a a constant 'woozy', feeling, a bit like swimming underwater, where nothing seems 'real' - obviously this isn't ideal when trying to work/carry out daily tasks! Sinusitis has also affected my eyesight, as the pressure in my face and eye area causes floaters and blurred vision (had it checked out by Moorfields and it's definitely nothing more sinister than the sinusitis, but they said there's very little they can do about it).

Have finally got my GP to refer me to an ENT specialist, after many instances of not being listened to. However, I'm not sure I'd opt for surgery, as I've heard from multiple sources (including several GPs) that it's quite a nasty procedure and the success rate isn't great. Probably not what you want to hear, I know, but that's the advice I've been given. Apparently it involves 'stripping' the sinuses of their natural lubricant, which leaves them quite 'raw' and can make breathing more painful. It's also fairly common for the operation to work temporarily, only to revert to normal after a year or so.

Part of the problem with sinusitis seems to be that it has so many different causes - structural problems within the sinuses themselves; allergies; untreated infections; excessive sensitivity to tiny changes in weather/ air pressure. Every sufferer will be different. In my case, I think it's at least partly hereditary/structural, as my mum has similar problems, which again went misdiagnosed for many years as migraines or eye problems.

For me, what has worked more than anything else is daily sinus rinsing using a neti pot. It's really very simple to do once you get the hang of it, and not very expensive - a tenner or so for the pot and some saline sachets. It's important to use sterile/distilled or boiled water to avoid the risk of infection, as untreated tap water has been linked to several deaths among neti pot users in the US. I also take antihistamines for allergies. I've tried steroid sprays, but they give me nosebleeds (apparently 15-20% of people are predisposed to this) and I do think you become dependent on them if used for long periods, which makes symptoms worse once you try to stop.

One other thing: I've noticed that holidays in places with dry or thin air (Spain, the Alps etc) have caused my symptoms to ease dramatically. For example, I've just been skiing, and was pretty much symptom free for the whole week (bliss!). For this reason, I've recently bought a dehumidifier, as our air here in the UK is naturally very moist, plus I live in London which obviously has higher pollutant levels than elsewhere. It's early days yet, but it does seem to be having a positive affect on my symptoms - less facial pressure etc. However, your mum really needs to work out what exactly it is that affects her, as equally some cases of sinusitis are eased by moist air (hence being told by GPs to inhale steam etc!). Personally whenever I did this or used a steam room my symptoms would ease briefly, then come back with a vengeance, so it seems drier air is the way to go.

Re. the ears, I do sometimes have pressure/pain here too, and I don't think it's that unusual - obviously all of the 'tubes' in this area are interrelated, and a problem with one area can have a knock-on effect on another. If your mother's problems are caused by the structure of her sinuses themselves (as I suspect mine are) it may be that she has particularly narrow ear canals or Eustachian tubes. Mine are very narrow, and I need to have my ears syringed regularly to avoid a build-up of ear wax, which can cause more pressure and exacerbates my sinus problems.

Phew - apologies for the essay-length, but I've become something of an expert on this subject over the past ten years! Unfortunately the whole area seems to be little understood by GPs, and there seems to be a general attitude (among some, not all) that since it's not a life-threatening condition it's something that just has to be put up with. Just let me know if there's anything you'd like to ask about your mum's condition - am more than happy to help where I can. Hope she gets the answers she needs soon!

LEMmingaround Sun 23-Feb-14 19:44:35

Thanks everyone - some good advice here, half my problem, no 90% of my problem is to get my mother to take any of it! She is also expecting a miracle cure on Wednesday so i am expecting a world of trouble after that doesn't happen hmm

She does have a nasal polyp which was going to be removed during some rather major surgery she was going to have via the nose about 10 years ago now, the surgery didn't materialise so the polyp stayed, so i guess that needs to go. Whether or not this is the cause of the problem i don't know, its pretty high up and the doctors can't see it in a general exam.

She was given saline spray but wont use it because she says it makes it worse, the same for the steroidal spray, if something doesn't work straight away she wont use it.

They suggested she stop smoking - you would have thought they had asked her to cut off her leg! the outrage!

The nettipots sound interesting

Does anyone with this find that they get much dizziness?

MrsRTea Sun 23-Feb-14 19:49:30

Not dizziness as such, but a terrible feeling of being unwell. And that unwellness makes me really stroppy.

Could I just thank DiamondsandRust for that long post? Fascinating.

LEMmingaround Sun 23-Feb-14 20:00:17

Am going to ask about the macrolide therapy too, my mum will like the idea of having a lifetime supply of "anti-biotics"

Selks Sun 23-Feb-14 20:03:50

Anybody get frequent sore throats as well? I do and these are horrid.

DiamondsAndRust Sun 23-Feb-14 20:07:24

You're more than welcome, MrsRTea; I guess some good has to come out of my 10 years of online medical research smile! Lemming, it does sound as though your mother needs to start listening to some of the advice she's been getting - not least on the smoking front. I can't begin to imagine what my symptoms would be like if I smoked! And, yes, I do have dizzy spells, especially when bending over.

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