Nasal polyps

youcancallmeal

Anyone else a sufferer? I've had them going on 12 years now. Had a septoplasty to straighten out my septum and had some polyps removed about 10 years ago. The polyps came back quite bad after a few years to the point where they would sometimes be peeking out of my nose! That usually only happened when I had a big weekend with drink and smoking. I use corticosteroid nose drops/sprays when they get that bad.

I quit smoking a few months ago and thought things would get a lot better now that one of my triggers is gone. Turns out alcohol on its own is just as worse. I can literally feel my nose airway constricting as I drink my first beer and then I'm usually blocked up and can't taste/smell anything for about 3 days. I find flying also causes flares ups too.

I had a big weekend away recently and between the flights and alcohol I was blocked up really bad for about a week! I'm off the drink for the foreseeable future now and going to see another ENT specialist soon and see if anything can be done. Surgery isn't ideal because from what I've read they will most likely come back within months.

At this stage the blocked nose and constant blowing is something I've just gotten used to but its gets quit depressing when the taste and smell go for days at a time

frankled

How are you getting on with this? I may be waking up an old thread but interested to see how you are coping with this, as I am now waiting on nasal polyp removal surgery and my trigger is also alcohol (sadly).

youcancallmeal

I had surgery about month after my last post to have more polyps removed. Since then the polyps come and go, I was prescribed the steroidal spray Avamys to use when it gets bad. I hate using it though because while it does help reduce the size of the polyps it is very tough on the nose. After a week of using the spray my nose will feel clear but irritated and dry. Worst of all it destroys my sense of smell and taste, it takes weeks before I get it back. I recently asked my GP to put me on the public waiting list to see an ENT specialist. I know it's going to take up to 2 years but it's essentially just going to be a check up and I won't have to pay for it.

b318isp

Having had a septoplasty and at least 4 polypectomies, I'm now about 5 years clear of bad polyps. If I get a cold, my nose does constrict and I need strong steroids to clear up again.

The main contributing factors to my recent improvements I believe are:

- An operation to remove sinal bones. There is a matrix of bones in the sinuses which can be sites for polyp development, removing this reduced the chance of polyps starting
- Daily nasal rinsing with a salt/sodium bi-carbonate solution. This washes mucus and bacteria from the nose. This cleans and partially sterilises it.
- Daily physical exercise, which increases the bodies CO2 levels which help the sinuses to contract
- Using micropore tape to ensure my mouth stays closed while asleep. While this may sound extreme, it is one of the largest contributors to control of my asthma and rhinitis. The principle behind this is that mouth breathing stops the filtering and drying processes that the nose provides, and the body risks overbreathing. Taping the mouth closed ensures nasal breathing - keep air moving through it.
- Know your triggers. This usually involves an allergy test. Obviously manage exposures to these.

frankled

youcancallmeal wrote: »

I had surgery about month after my last post to have more polyps removed. Since then the polyps come and go, I was prescribed the steroidal spray Avamys to use when it gets bad. I hate using it though because while it does help reduce the size of the polyps it is very tough on the nose. After a week of using the spray my nose will feel clear but irritated and dry. Worst of all it destroys my sense of smell and taste, it takes weeks before I get it back. I recently asked my GP to put me on the public waiting list to see an ENT specialist. I know it's going to take up to 2 years but it's essentially just going to be a check up and I won't have to pay for it.

Do they come back often?

Betnesol drops work great for me (temporarily- once the course is finished they're not long returning in size). The key to them, as informed by a specialist, is having your head upside-down for a couple of minutes each time you administer them. After a day back on them for the second time, my sense of smell is back. I am at a loss as to why a nasal spray would ruin your smell/taste senses, that seems counter-productive as I thought that'd be part of the reason for taking them. Have you ever tried Betnesol?

For me, paying for the ENT was necessary, and now after two visits I'm on the public list for removal. Sounds like you could be suffering worse than me though.

b318isp wrote: »

Having had a septoplasty and at least 4 polypectomies, I'm now about 5 years clear of bad polyps. If I get a cold, my nose does constrict and I need strong steroids to clear up again.

The main contributing factors to my recent improvements I believe are:

- An operation to remove sinal bones. There is a matrix of bones in the sinuses which can be sites for polyp development, removing this reduced the chance of polyps starting
- Daily nasal rinsing with a salt/sodium bi-carbonate solution. This washes mucus and bacteria from the nose. This cleans and partially sterilises it.
- Daily physical exercise, which increases the bodies CO2 levels which help the sinuses to contract
- Using micropore tape to ensure my mouth stays closed while asleep. While this may sound extreme, it is one of the largest contributors to control of my asthma and rhinitis. The principle behind this is that mouth breathing stops the filtering and drying processes that the nose provides, and the body risks overbreathing. Taping the mouth closed ensures nasal breathing - keep air moving through it.
- Know your triggers. This usually involves an allergy test. Obviously manage exposures to these.

That's good advice/information to keep in mind. My allergy (sadly) is alcohol which is generally fine with anti-histamines- but unfortunately the symptoms are worse when the polyps are enlarged- so kind of a vicious circle. I've resigned myself to the fact that after surgery they will be back, and the ENT specialist even said this also.

youcancallmeal

Well I finally got to see an ENT specialist a few weeks ago. Took about 12 months on the public waiting list, not as bad as I thought it would be, though it was going to be closer to 2 years. Anyway she had a look and said yeah they are back pretty bad so she'll take them out again. Wasn't given any firm time frame when the surgery will be. She said maybe within a year or maybe longer? I suppose that's best I can expect for going public. I'm in no major rush though, if I was I would just go private. I have health insurance so wouldn't cost a huge amount. One interesting thing the specialist said to me is that I will most likely need surgery to remove the polyps about every 5 years for the rest of my life. She said this is pretty common with nasal polyp sufferers?

Anyway I am taking avamys spray a few days at a time whenever they get too bad. I've recently completely quit smoking. I wasn't a heavy smoker, maybe 20 or so rollies if I was on a night out. I've noticed that my polyps have gotten a lot worse since I quit, I think I actually read somewhere that smoking does help keep them at bay? I won't be going back smoking but an interesting observation none the less.

b318isp

youcancallmeal wrote: »

One interesting thing the specialist said to me is that I will most likely need surgery to remove the polyps about every 5 years for the rest of my life. She said this is pretty common with nasal polyp sufferers?

I was told this, but I have managed to avoid this with the measures I took above. Prevention is better than cure - I don't find the thought of going under a general anaesthetic attractive, and I hate getting the nasal "tampons" removed.

Decided to take action, and it seems to have worked. My nose hasn't detriorated over the recent years.

frankled

youcancallmeal wrote: »

Well I finally got to see an ENT specialist a few weeks ago. Took about 12 months on the public waiting list, not as bad as I thought it would be, though it was going to be closer to 2 years. Anyway she had a look and said yeah they are back pretty bad so she'll take them out again. Wasn't given any firm time frame when the surgery will be. She said maybe within a year or maybe longer? I suppose that's best I can expect for going public. I'm in no major rush though, if I was I would just go private. I have health insurance so wouldn't cost a huge amount. One interesting thing the specialist said to me is that I will most likely need surgery to remove the polyps about every 5 years for the rest of my life. She said this is pretty common with nasal polyp sufferers?

I've been told recurrence is almost certain, but before my surgery about a month ago I was told that with proper care (Saline wash & Nasonex) I could get 10-15 years out of it. So far so good anyway, sense of smell hasn't come back yet though.

b318isp wrote: »

I was told this, but I have managed to avoid this with the measures I took above. Prevention is better than cure - I don't find the thought of going under a general anaesthetic attractive, and I hate getting the nasal "tampons" removed.

Decided to take action, and it seems to have worked. My nose hasn't detriorated over the recent years.

The packing in my nose was dissolvable thankfully. Good to hear it is still going well.

Old Perry

just a quick question for a friend, how much does this surgery cost roughly? is the standard laser or scalpel ?

frankled

Old Perry wrote: »

just a quick question for a friend, how much does this surgery cost roughly? is the standard laser or scalpel ?

I got mine (functional endoscopic sinus surgery) done publicly at the time but I was told by a GP that the cost was €700-800. That could be way wide of the mark though.

I'm not sure exactly how it is done, can't really remember, my guess would be scalpel.

youcancallmeal

frankled wrote: »

I got mine (functional endoscopic sinus surgery) done publicly at the time but I was told by a GP that the cost was €700-800. That could be way wide of the mark though.

I'm not sure exactly how it is done, can't really remember, my guess would be scalpel.

I think that's about right from what I remember, I got the itemised bill out from insurance company last time and it was around that. All in including an overnight stay, general anaesthetic etc it was about 2k. That was 5 years so probably more than that nowadays.

frankled

Incidentally, finally had a consultation again today, the polyps were not fully removed it seems and whilst conditions are still majorly improved from my surgery, my sense of smell is non-existent unless I am taking steroid medication, and sometimes breathing/congestion is a bit of a pain. Anyway, turns out I'll be having the FESS surgery again, almost two years later. Just if anybody in a similar boat here is interested!

siblers

Frankled, did you make any changes to your diet since the surgery? Also, how did you go about getting it done publicly? Did your local GP have to refer you?

frankled

I didn't really make any major dietary changes no. Really I think a second operation might always have been necessary. I probably cut down on dairy- that'd be the only noticeable change (purely because I believe it could thicken mucus produced- but not sure on that).

In terms of being done publicly- yes my GP referred me.

youcancallmeal

I'm still waiting to have another FESS done again on public system, nearly 3 years now since initial referral by GP. The polyps come and go, I manage it with the steroidal spray

ectoraige

I've suffered mildly from these for years. I've been offered surgery a few times when an infection has flared up but most of the time I don't them a second thought. I'm curious though, have for those who had the operation, how long did they progress from mild irritation to being a major issue for you?

I do have steroid sprays but I generally don't take them. I have noticed some triggers, coca-cola in particular seems to really irritate them for some reason, dairy isn't great either.

frankled

youcancallmeal wrote: »

I'm still waiting to have another FESS done again on public system, nearly 3 years now since initial referral by GP. The polyps come and go, I manage it with the steroidal spray

If you don't mind me asking, which spray? I've used both Nasonex and Avamys, both control the polyps to a level where breathing quality is better, but neither achieve proper sense of smell. Full steroids (Betnesol or oral tablets) achieve that.

ectoraige wrote: »

I've suffered mildly from these for years. I've been offered surgery a few times when an infection has flared up but most of the time I don't them a second thought. I'm curious though, have for those who had the operation, how long did they progress from mild irritation to being a major issue for you?

I do have steroid sprays but I generally don't take them. I have noticed some triggers, coca-cola in particular seems to really irritate them for some reason, dairy isn't great either.

I had the operation almost two years ago. To be honest symptoms since have been like the above, the sprays controlled things. My polyps aren't too bad now still, but I need another FESS to get what the first surgery missed it seems.

youcancallmeal

frankled wrote: »

If you don't mind me asking, which spray? I've used both Nasonex and Avamys, both control the polyps to a level where breathing quality is better, but neither achieve proper sense of smell. Full steroids (Betnesol or oral tablets) achieve that.

I've been using avamys but yeah it does affect sense of smell and can be quite harsh on your nose in general. My polyps have come back pretty bad now in last few weeks and even the spray is having little affect in reducing their size. I rang hospital where I'm on public waiting list and they said realistically I could be at least another year waiting so think I'm just going to bite the bullet and go private.

ectoraige

The last few weeks I've had a major flare-up as well. Been using saline spray and Avamys but missed a days work due to a sinus infection, and haven't been training as I've so much mucus I've coughing fits. I think when I'm back with the ENT I'll ask to get on the surgery list.

b318isp

There must be something "in the air", I can't quite shift the snuffles since Christmas.

frankled

youcancallmeal wrote: »

I've been using avamys but yeah it does affect sense of smell and can be quite harsh on your nose in general. My polyps have come back pretty bad now in last few weeks and even the spray is having little affect in reducing their size. I rang hospital where I'm on public waiting list and they said realistically I could be at least another year waiting so think I'm just going to bite the bullet and go private.

Incidentally I've just had another appointment this morning. Have been on steroids for a week for a chest infection which have done wonders for my nose temporarily, as they always do. But even with that, I was told my polyps are quite bad, so surgery is happening again to complete the job (I hope). Got a lot of detail about the structures of one's nose today, and how complicated it can be.

On the public list too currently, but looking to go private if needs be.

I find Nasonex and Avamys to be pretty much useless in affecting polyp size.

b318isp

frankled wrote: »

I find Nasonex and Avamys to be pretty much useless in affecting polyp size.

I'm on Dymista and it works well, it contains an antihistamine.

frankled

b318isp wrote:

I'm on Dymista and it works well, it contains an antihistamine.

Tried that before myself, but when they were quite bad. Might be an option again the next time!

CeilingFly

I had FESS done last year. From having virtually no sense of smell for years, I now have a very keen sense. Breating and speech far better too.

I had health insurance, but costs were not too bad.

Without insurance it would have been circa €2,200 incl overnight stay in Clane hosp and that would be tax deductable, so net cost is about €1600. (approx 600 for surgeon + €200 for the initial consultation, €600 for anaesthetist and rest was the hospital stay)

From initial consultation to operation was about 8 weeks. From the experience I had, its a very simple operation - I was one of 12 patients being operated on by the same guy that day - 4 of which were FESS (the snoring in the room that night would have set off earthquake alarms as we all had our noses stuffed)

Definitely worth looking at going private if its a big issue.

youcancallmeal

youcancallmeal wrote: »

I've been using avamys but yeah it does affect sense of smell and can be quite harsh on your nose in general. My polyps have come back pretty bad now in last few weeks and even the spray is having little affect in reducing their size. I rang hospital where I'm on public waiting list and they said realistically I could be at least another year waiting so think I'm just going to bite the bullet and go private.

About a month after this post in 2018 I saw an ENT privately. He recommended not having another polypectomy as there was a risk of permanently damaging my sense of smell due to scar tissue build up, also they'll more than likely just come back as they are chronic in my case. Instead he gave me a very strong course of oral steroids. The side effects were rough but the relief was incredible, completely got rid of my polyps and smelling and tasting things like I did 20 years ago in my teens. The side effects while taking the steroids(prednisone) was disturbed sleep and feeling anxious in general. The consultant recommended never having a polypectomy again and just keep treating the polyps with a steroidal nasal spray and do a course of oral steroids when they build back up badly.

About a year after my first course of steroids the polyps came back pretty bad in summer 2019 so I went to my GP. I showed him the original prescription my consultant had given me but he felt uncomfortable giving me the same dose so he gave me about 2/3rds of it. It worked pretty well but I've been getting flare ups on and off through 2020. They're quite bad now after Christmas and the steroidal spray which I've been using heavily through December is ineffective. Going to talk to GP again this week about another course of oral steroids.

I've been reading about a revolutionary new treatment called Dupilumab (Dupixent®) which is supposed to be for a number of issues including eczema and polyps. It seems like it's not yet approved for use in Ireland though or maybe I'm misunderstanding and that it is available but not for free as part of the drug payment scheme. Something to keep an eye for sure, could be a game changer

frankled

youcancallmeal wrote: »

About a month after this post in 2018 I saw an ENT privately. He recommended not having another polypectomy as there was a risk of permanently damaging my sense of smell due to scar tissue build up, also they'll more than likely just come back as they are chronic in my case. Instead he gave me a very strong course of oral steroids. The side effects were rough but the relief was incredible, completely got rid of my polyps and smelling and tasting things like I did 20 years ago in my teens. The side effects while taking the steroids(prednisone) was disturbed sleep and feeling anxious in general. The consultant recommended never having a polypectomy again and just keep treating the polyps with a steroidal nasal spray and do a course of oral steroids when they build back up badly.

About a year after my first course of steroids the polyps came back pretty bad in summer 2019 so I went to my GP. I showed him the original prescription my consultant had given me but he felt uncomfortable giving me the same dose so he gave me about 2/3rds of it. It worked pretty well but I've been getting flare ups on and off through 2020. They're quite bad now after Christmas and the steroidal spray which I've been using heavily through December is ineffective. Going to talk to GP again this week about another course of oral steroids.

I've been reading about a revolutionary new treatment called Dupilumab (Dupixent®) which is supposed to be for a number of issues including eczema and polyps. It seems like it's not yet approved for use in Ireland though or maybe I'm misunderstanding and that it is available but not for free as part of the drug payment scheme. Something to keep an eye for sure, could be a game changer

Cheers for the update- that new drug is definitely one to watch out for- looks very interesting alright. My polyps are behaving themselves since surgery a year and a half ago, only using a steroid mixed into a Neilmed rinse bottle.

Angelic skin co

Hi Lads,

I just seen this thread a lot detail i found very good I've had one sinus surgery and it looks like ill be needing another. I'm just after getting a ct scan on my sinus and they are full of polyps hence i have a lot of pressure and pain in the cheeks along with head aches and nasal drip.
Its the head aches that really bother me i have no issue with smell as of yet thank god but i did a few years ago it completely went for months. I just wanted to see what you all have found best to control the polyps?

Thanks

Steve

youcancallmeal

Angelic skin co wrote: »

Hi Lads,

I just seen this thread a lot detail i found very good I've had one sinus surgery and it looks like ill be needing another. I'm just after getting a ct scan on my sinus and they are full of polyps hence i have a lot of pressure and pain in the cheeks along with head aches and nasal drip.
Its the head aches that really bother me i have no issue with smell as of yet thank god but i did a few years ago it completely went for months. I just wanted to see what you all have found best to control the polyps?

Thanks

Steve

I'd be wary of having repeated surgeries as they may just come back. If that's what your ENT thinks is best though then can't argue with that. For controlling the polyps I find a combination of anti-histamines and steroidal nasal spray works for me but mine are in my nasal cavity and not in the sinus like yours. When it's really bad then a course of oral steroids does the trick.

frankled

Exactly as above. My symptoms would be quite different so our polyps are obviously in different places- with me my sense of smell is the first thing to go- I can't recall ever having headaches. These days I use a Neilmed Sinus Rinse with steroids mixed in- a somewhat non-traditional method that seems to keep things controlled for me. Your ENT is of course the best person to advise further. Has it been long since your previous surgery?

tipptom

Hi Guys,have much the same symotoms as a lot on here but sprays and steroids dont work now

Have big polyps in both nostrils very close to the base of the nose on one side.Being like this for about for about 4 years and no smell or taste whatsoever,not even for a less agressive period nowadays.Flushing through is pointless as i cant breath at all through the nose either side

On a waiting list for a consultancy for years but am thinking now of getting a private consultancy to see can i get an emergency letter to bump me up or go abroad on a refund scheme which i would need the letter to proceed.

Only thing that worked for a while was the oral little red tablets that you take six in one go daily,but my poylps seem to have defeated them completley now,so if anyone know of anything stronger for me that ic ould be prescribed and worked on a partial basis for a little respite would be great

I can put up with the no taste or smell now that i am so used to it,but its being only able to breath through the mouth is the killer for me all these years and i find i am getting it harder at night time now when i should be used to it for the last four years

Am based near Limerick so if anyone knows a good private consultant in this sphere locally that i can tell them that i will not be paying for private surgery with them,thanks

b318isp

I suggest you lean on your GP. A private consulation can be arranged in weeks, but unfortunately, I don't think there's any a short cut publically without health insurance. A consultant won't see you without a referral from your GP anyway.

The red tablets (deltacortil, I assume) should be taken rarely due to side effects with repeat use - and only as advised by a GP.

As you are probably waiting publically for a consulation/operation, see if the GP knows of shorter lists in different hospitals - even if you have to travel. It may also be worth considering basic health insurance (if you don't have it) to cover this into the future.