sinus issues

[vdub]

Before being diagnosed with wg and before getting my pituitary drilled out, I was having what seemed like a sinus infection and I was treated by 4 different doctors for a "sinus infection". All the "sinus infection" seemed to disappear last Apr after the pit surgery. Last month I started up again with the sinus issues. My ENT "scraped out" my sinues in order to eliminate any possibility of an infection. Lab tests show I'm clear.

Soooo, the question is "am I having some sort of flare"? Not sure how to put this daintily.... But, I have to strongly sniff thru my nose to clear out garbage from my sinuses to get it into my throat and spit it out. What do you call that, snorting? :-) And, I am having to constantly clear my throat. I cough occassionally, maybe a coughing spell every hour or so, but not the rib cracking type of cough and no blood. However, every morning I do sneeze out a bunch of blood from the sinuses...

Is this all part of the wg?

On the upside! I have been referred to and accepted by the UofU Vasculitis Center in SLC.

[elephant]

Vdub, the snorting that I do is normal for me and I am in remission, it could be all the damage that has been done to your sinuses. But any increase of coughing is something to look at. The blood from the sinuses could be WG or other ( dry environment)..ect
So nice yo hear tha tyou are going the Vasculits Center!

[pberggren1]

vdub, have you tried using the Neilmed Sinus Rinse Kit with squeeze bottle. Based on what you said I recommend you try this. You can get it at most pharmacies for about 15 to 20 bucks I think. It will help wash out any crusties or chunks or other mucus from the nasal passages and keep it moist for a bit as well. Dry air seems to be the enemy of most sinuses and noses. Maybe even using a humdifier in your room during the night might help as well.

[vdub]

I do both the netipot and the humidifier. The humidifier is on my cpap so it's pretty direct....

[pberggren1]

Good to hear vdub. I know quite a few people that use the netipot and get good results. Sorry you have to use the cpap but at least you are getting moist air as well. I hope you can get some more answers at U of U. Do you know which doc or docs you will be seeing there?

[vdub]

My understanding is that I'll be seeing Koening. He came from the Cleveland clinic and started UofU center. Not sure who the neurologist or ENT will be.

[Sangye]

I'm relieved to hear you're going there, vdub. They'll have so many answers for you. :thumbsup:

[Jack]

Every case of Wegener's is so different and you should not read directly from one case to another, but I'm very familiar with the condition you are describing and the last time I was that bad was just before my Wegener's diagnosis. Hope you are being monitored closely because it was very nearly the end of me after only a couple of weeks! I don't mean to sound alarmist, I'm just hoping that you have a specialist in charge of your treatment.

[vdub]

I see a rheumetologist the 3rd of Jan. It will be my 2nd apt with him since last Apr. The real specialist at the U of U doesn't come along until the beginning of Feb.

[JanW]

Had the same nasal stuff as that, and I cleared up really quickly (like almost overnight) once I had been on the correct maintenance dose mtx for a couple of weeks. How your surgeries have impacted you, I really can't say (but I know that as a WG sinus surgery should be avoided at all costs!

[vdub]

Do you happen to know why a weggie shouldn't have sinus surgery? I am very anxious to get to the wg experts in utah.

[JanW]

Generally, surgery is serious business and anything that isn't absolutely medically necessary/can't be handled by any other option shouldn't be handled surgically until you are in remission. Of course many of us don't have this choice (I didn't with my windpipe).

Secondarily, often ENTs perform unneeded sinus surgeries because WG symptoms can be fixed medically. So, the surgery was absolutely unnecessary to begin with. That's the real horror show of wegs for people who have sinus involvement. Many people had the horrific Caldwell Luc surgery (I believe Jack here may have had it), which I heard an ENT describe as essentially "taking off the front of the face to clean out the sinuses). Highly invasive and painful, and, if you have uncontrolled WG, you'll be back to square one in a matter of months. I mean, when ENTs are describing a surgery as horrible and painful, I sit up and take notice (my understanding is that it is rarely done at all now, however).

Like everything else with WG, you have to treat the underlying disease, which is harder than in looks.

[vdub]

Yeap, that's me! The last surgery, IMHO and not being a doc, was totally unnecessary, hurt like the dickens, and did absolutely nothing to improve things....

[pberggren1]

So vdub, you have had the Caldwell Luc procedure done on your sinuses? What is IMHO?

[vdub]

Not caldwell luc, but not sure what it would be called. I was billed for an endroscopy. He went up thru my nose and enlarged the openings to my sinuses and, as far as I know, scraped the cavities clean. I had splints in my nose for about 10 days.

IMHO=In My Humble Opinion....

[marta]

Hey vdub,

The snorting, as you call it, is my normal way of life when I'm in the disease state. It's quite a sound. I do it in the privacy of my own house, but so often that on a few occasions I've caught myself doing it unconsciouslly in public a couple of times - not cool.
The stuff that comes out when I'm actually successful is nutty. Yes, bloody. I am now on week three of re-starting the cytox and pred treatment and the bloodiness and the volume of stuff coming out has diminshed substantially. I can definitely feel it get better with treatment. Don't know if that helps - for me the sinuses and ears / eustachian (sp?) tubes are what seem to get affected the most when I'm fully in it.

Take care of yourself and hope things get better for you sooner rather than later. Are you being treated for Wegs right now? Sorry I can't remember.

[vdub]

I'm on mtx now. 15mg on Thur each week. I've not had any problem with the ears.

[elephant]

I too had the Caldwell luc surgery too, I had four maxillary surgeries on of them took bone out my face. The last one helped, but the last three didn't. I was not diagnosed with WG for the first two surgeries and the last two the ENT new I had previous maxillary surgeries. I was suffering so bad I didn't know what else to do, and didn't know better until I came on this forum.

[marta]

I'm on mtx now. 15mg on Thur each week. I've not had any problem with the ears. After this last flare I had at the begining of November I got put back on Cyclophosphamide/Cytox and pred (I'm weaning down and just started 20mg today) and am just starting to feel my sinuses dry up a bit. Now I'm stuffy, but there isn't the volume of gunk behind it to help the last of it get out. I definitely feel a difference once the meds kick in. I look like the Pilsbury Dough Boy from the pred, but I don't feel as awful inside, so it's a trade off.

[pberggren1]

But Marta, everyone loves the Pilsbury Dough Boy!

[marta]

Only to eat him, and perhaps his cute little laugh.

[Jack]

I had a series of increasingly invasive sinus surgeries ending with the Caldwell Luc (in hospital, people point at you and whisper behind their hands!). After most of the ops I was worse, but the Caldwell eased things for a while, probably because I no longer had any sinus material left. However, it came back with a vengeance a few months later accompanied by renal failure and a load of other problems. All this was unnecessary and my sinus problems went away following treatment for Wegener's.

[Sangye]

Curious about this famous Caldwell Luc surgery, I decided to Google it and see what it was all about. Oh. My. Gosh.

Here (http://www.houstonoto.com/CaldwellLuc.html) are a couple pics. WARNING: They are very graphic and might make you toss your cookies.

I can't believe anyone did that to my poor Jack and Elephant. :sad:

[Jack]

I made the mistake of Googling it a few years back and have not done it again since!
I won't be clicking your links thank you.

[Sangye]

No, you shouldn't look Jack. I don't think I'd want to if I'd had it done. It's barbaric.

[JanW]

The ENT who presented about sinus problems in WGs at the Symposium along with Dr. Lebovics referred to it as "taking your face off to perform surgery." No there's an image (and yes, they showed us pictures). Both ENT presentations were made with the caveat of 'we were told that none of our images should be disturbing or too graphic.' Let me assure you, if healthy people saw those pictures, they would make them gag. Some of the very severe saddle noses are bad enough, let me tell you (and I can say that because I have one).

[drz]

But Marta, everyone loves the Pilsbury Dough Boy!

Maybe we should try adopt him as as our emblem.

[elephant]

I am so glad I never googled this before my surgery! Ugg, they should of sucked my bags out as long as they were in there!

[vdub]

I'm weaning down
I don't have to wean down on steroids anymore. That's not necessarily a good thing. The reason you "wean down" is to give your adrenal gland time to "wake up". My adrenal is kaput, so I can stop the steroids flat out.....

[Sangye]

The other reason for tapering pred slowly is to avoid waking up the Wegs. I would think that's still a major factor for you, vdub.

I'm down to 3mg pred. When I saw Dr Seo this week, he said to stop at this level because some Wegs symptoms are starting to return. This is one place where Weggies frequently get into trouble tapering pred. They go too fast and it causes a Wegs flare. In my case, it's likely that the rtx is wearing off and the Wegs dog is easier to wake up.

[vdub]

That certainly could be true. The "no taper" info came from my endocrinologist, but she might not have consider the wg side of the issue. Another good reason to belong to this forum...

[Sangye]

When you see the Wegs doc they'll know for sure.

[Jack]

I understood that the Pred took over from the function of the Adrenal glands. If you have no glands and no Pred what is left to do the job? I'm confused.

[elephant]

I think if you have no adrenal function, you have to stay on prednisone.

[Sean48]

Hi

I have a question about my sinus. I notice lately that when I sleep and breath thru my nose that when I breath out its like a flap closes and i need to open my mouth to breath out. I have no problem during the day. I dont have mucus in my nose either. I hardly ever have to blow it.... Very strange. My WG was diagnosed in my lungs.
I must also must say that my white cell count was low on my blood test last week (went down to 2) My doctor took me off the cytoxan and uped my pred 5 mg. I had it done again yesterday so hope it is back up....The flap thing started before that. My question is.....does anyone know what I am talking about and what it may mean?

[Jack]

I think you should get a referral to an ENT. He will soon tell you what it is.

[elephant]

I agree with Jack's statement. The ENT will look up your nose and look around.

[Sangye]

ROTFL I know you didn't mean it to sound funny, Elephant but that really made me giggle. :lol::lol::lol:

[Sean48]

thanks everyone. I will be seeing my WG this month and will also set up something with the ENT.