New from the UK

[Jack]

Great news that you are getting the works and nothing is affected but your nose. You are now allowed to relax a little, just don't get complacent, Wegs is sneaky and can turn around and bite you.

[eileenv]

Hi Sam, I live in Romford in essex sorry to hear about the trouble you have had getting a diagnoses. I'm having a nasal biopsy on the 7thoct and then maybe i will get conformation wegs. I've had eighteen months of symptoms but no major organ involment other people on here have had terrible rough times. I've got a deviated septum and left sinus on CT shows it's filled up with muck. I'm currently on pred and plaqunil, nasonex and sterimar, none of which are helping nasal promlems. My ent appointment was marked as urgent i had to chase it up as they never even got the referal!!

[freakyschizogirl]

Thanks for the Hugs elephant...and ya i do need to stop beating myself up.

Jack...i'm expecting this beast to get worse before it gets better...had a letter in the post today for my lung function test next tues...nice to see things moving quickly. And a blood test on tues too...so whoopie!

Eileen, nice to know there is someone close. Do you go to a hosp in Romford?? Good luck with the biospy, my first one was a breeze, the second one wasnt! He took 2 layers of tissue outta each nostril and that HURTS! And the anaesthectic wasnt good this time round, i was so sick!

My ENT consultant wanted to give me nasonex...i've had it before and it didnt make any impact on my problems. I dont like spraying things up my nose...its got enough problems without hosing it with stuff.

[Jack]

I think you need to move away from this ENT as soon as you can. Many on the Forum have had bad experiences with ENT consultants due to their tendency to treat the symptoms rather than the disease because they don't understand what is going on. That is what yours is attempting to do by suggesting the use of a topical steroid. A Rhumatologist or even a Nephrologist (if you have renal involvement) should be in charge of your treatment.

[freakyschizogirl]

No worries on that one...My old ENT has lessened his hours so i have a new one now...she's the one who kick-started all this so she has done well by me so far...but she was the one who was gonna give me the nasonex.

I saw a lung or chest specialist on tues...he's refered me back to my old rheumy. So i wont see ENT again for some time

[malin]

I also live in Essex and see a rheumy and ENT there, my Rheumy(s) are in Grays (Orsett) and in Basildon but I also have an ENT doctor in South End (uni hospital).

My main "problem" area is my ears, never really had any other involvment except joint pains and all that.

The first ENT doctor I saw was at Orsett/Basildon and he was a joke! He told me he thought maybe my ear problems were down to acid reflux? All I could think was "Haha what? Where did you get your doctors licence from?" It just so happens that before I moved over to the UK I was seen by some of the top ENT WG specialists in the world at Swedens top hospitals and have had my WG diagnosis for 6 years!

So, I went to my GP and got refered to another ENT doctor in South End, even my GP laughed when I told him what the ENT at Orsett had said! :/

It's kinda worrying that there are doctors out there that are like that, people could die because of their ignorance and cluelessness :/

[Jack]

people could die because of their ignorance and cluelessness :/

And sadly they do as we have witnessed here on the Forum.

[freakyschizogirl]

wow, that is truely sad. And so unavoidable!

But i suppose tis cos it is a rare disease.

[Fran]

Hello Malin - Sorry to hear of your experience. That ENT reminds me very much of the one I saw 12 years ago, 2 years before WG dx, who performed a small 'op on my nose that was going to cure the awful sinus, and hearing problems I had with one ear. Of course it didn't, so I went back to see him - he had his registrar with him and when I explained that nothing had changed and in fact, it was worse, the consultant struck a tuning fork, stuck it on my head and asked if I could hear it - I said yes of course I can, as I was deaf only in one ear, he then patted me patronisingly on the shoulder and said 'well my dear, go down to the local pharmacy and buy a big bottle of Gaviscon' without explaining the reason - I thanked him for nothing and heard them chuckle at my reply as I went. Supposed to be professionals ?

I told my GP who explained about acid reflux and post nasal drip; he assured me he would never refer me to that particular ENT again.

I have told this story lots of times and had a laugh about it, but it isn't funny really at all.. . Just why aren't ENT's aware of WG as so many of us start that way.

Sam - Wishing you well

[JanW]

Yes, Sam, you will hear it referred to as a 'saddle nose deformity' -- that's simply what it's called in medical parlance. My own surgeon who I love, did a presentation on it at the VF Symposium and prefaced his talk by saying that he was told not to show pictures that were *too* gruesome -- and then showed pictures of what I've got, and told the stories to go with them. Like stories where he had nursery school teacher whose students called her the monster or a guy from a small village in South America who couldn't get anyone to marry him because of his nose (but he ended up becoming a doc, so someone probably did). Understand, my surgeon is a lovely and very compassionate guy, but even docs consider this a devastating complication of the disease. It's hard sometimes because a lot of times people with the saddle nose also have stenosis, so have breathing problems, but don't have crushing weight of the disease with kidney involvement, fatigue, joint pain, etc., so you are not as 'sick' as some others on this board (although you have sinus problems with are horrible in and of themselves). Even Weggies in wheelchairs with oxygen tanks stare at people with a saddle nose -- and they know what it is -- because you kind of can't help it. Fellow weggies asked me questions about it -- again compassionately -- but it's also a rarer complication (less than 15 percent) and they had just never seen anyone with it before.

All of this is simply to say that yeah, it's horrible, but it can be fixed, with a good result, as long as you understand that it may collapse again if/when you flare, and also understand that only your own tissue can be used. I know Symposium people from other countries have had plastic surgeons in their ENTs practice all over them to fix it with synthetic filler materials -- because they can't stand looking at something that can be fixed. This is a huge mistake for weggies, for all of the obvious reasons.