Disappearing sinuses

**annekat** · 04-17-2014, 06:40 AM

I've copied and pasted here to a new thread so as not to further hijack the "Nasal Discharge" thread. I have deleted it from there.

Sorry to be so mysterious, but I had my ENT appt. and am having trouble reporting on all that was said, because I don't fully understand it yet. Basically, I have no sinuses left, that is, no cavities filled with air as they are supposed to be. The bone has undergone changes, the mucosa in the sinuses have basically disappeared, so are not producing mucus. The former cavities have been permanently filled in by something; whether it is bone or tissue or both, I am not clear, but my ENT feels there is nothing that can or needs to be done, that the sinuses will cause me no more problems for the rest of my life, since there is no space for anything to get trapped and start an infection or whatnot. He used the term "common cavity" to describe either the former sinus cavities or the nasal cavities or perhaps all of it together; erosion has apparently broken down the barriers between them. (I keep playing with the words here because I'm uncertain); I'm not clear whether I still have turbinates or even what they are. Happily, the ENT said my nasal cavity looks good, the mucosa are looking more normal and are producing normal looking mucus. He says I've been doing a good job of cleaning but need to keep it up.

As for allergies, he says they can still give me asthma and some ear problems, but not in the sinuses, since there aren't any, and not much in the nose, since it is doing a pretty good job of flushing things out. He appears to disagree with my WG doc who says I cannot have allergy symptoms while on immunosuppressants, and prescribed me a steroidal inhaler in case asthma becomes a problem. He says I can take generic Zyrtec twice a day.

As for the vertigo and dizziness I've had, he wants to see me in a month to discuss that more. He removed a HUGE chunk of ear wax which I feel could have been part of that problem, but he feels more that it is an inner ear problem, or at least that needs to be investigated further.... I'm to keep a journal of any dizziness or vertigo and the conditions under which they happen, and still have the meds to keep it from happening as much, but I'm not to over-use them.

I am still having a WG flare according to the numbers, and he didn't really address how that can be affecting all this. He does not treat WG but probably has some understanding of it... it is just that there was so much to talk about and I'll be seeing the WG in another 2 weeks to see if the inflammation has gone down with the increased pred, etc. I also need another hearing test soon, as one of my ears hears worse and the aid probably needs adjusting.

My ENT is very nice and spent a lot of time with me... even did another, more detailed CT scan right there and showed me the results (no charge!), and compared them to a scan from 5 years ago. His conclusions were a little different than the radiologist's from the previous recent scan. But even with all the time spent, I just cannot absorb it all and have been finding some info on the web... apparently this complete obliteration of the sinus cavities is not unheard of with WG, but it is hard to find info that is not too full of technical language. Will try to share more as I find out more.

I will next copy and paste my response to a response on the other thread, including a quote from Dale.

**annekat** · 04-17-2014, 06:46 AM

Originally Posted by renidrag

I don't know it I should congratulate you or what? I like the part about not ever having sinus issues for life but at the same time I would really like to know where they went. Glad you are seeing WG doc soon and hope your numbers are ok.
Dale (this was Dale's response on the other thread... quote box did not transfer)

So you see why I hesitated to post. I don't understand it either. With the first CT scan, the radiologist thought I had underdeveloped sinuses, which some people have. But the old scan at my ENT showed I once had air spaces in there, though they were being encroached upon by thickened mucosa. He described a process by which the sinus bones can erode at their cores but thicken on the outside. So I guess some of the space could be filled with extra bone caused by "neo-osteogenesis", a term I found online related to WG. But if it was all bone, I'd think it would show up as pure white on the scan, but it doesn't, and they've determined it isn't liquid or mucus, so I guess it must be "tissue" whatever that is. Will try to get more clarification. Another person I've talked to on this forum may have this same thing going on, there "isn't much left" of her sinuses.

**pberggren1** · 04-17-2014, 07:26 AM

Did you notice the change Anne in your sinuses? That could explain the vertigo. I wonder what your e-tubes are like. Your voice must sound different then.

**annekat** · 04-17-2014, 07:48 AM

Originally Posted by pberggren1

Did you notice the change Anne in your sinuses? That could explain the vertigo. I wonder what your e-tubes are like. Your voice must sound different then.

I think the change did not happen all at once, so, no, I didn't notice anything except that there was less coming out of my sinus rinses, maybe... Don't know what my e-tubes are like. I hadn't had a CT scan in 5 years, since before I knew I had Wegs. So the changes in the scans were evident but I didn't get a time frame as to when or how fast this would have happened. That is a question for my ENT when I see him in a month. He doesn't seem to think that caused the vertigo. I still suspect the huge chunk of hard, compacted ear wax that was pressing right up against my already caved-in ear drum. But it remains to be seen; if I get another vertigo, I'll know that wasn't it. He and I will talk about it in a month.

I don't think my voice sounds any different. Maybe I should ask some people what they think. But my voice has sounded a whole lot better since I started getting treated for Wegs than it did before. It has normally been on the deep side during my life, and I think it still is, most of the time. It also seems to project pretty well. No one has said anything about it.

**Titus3:2** · 04-17-2014, 09:21 AM

Hi annekat, I have not had any problems with WG in my nasal cavity or sinuses in many years.I am left with a weggie's nose.I was told by my ENT doctor that my frontal and maxillary sinuses had self obliterated.I don't remember if the sinuses where filled in by bone or some cartilage.It was caused by WG.I have also suffered permanent hearing loss in both ears.I hope this is a little help.Take care.

**annekat** · 04-17-2014, 09:30 AM

Originally Posted by Titus3:2

Hi annekat, I have not had any problems with WG in my nasal cavity or sinuses in many years.I am left with a weggie's nose.I was told by my ENT doctor that my frontal and maxillary sinuses had self obliterated.I don't remember if the sinuses where filled in by bone or some cartilage.It was caused by WG.I have also suffered permanent hearing loss in both ears.I hope this is a little help.Take care.

It is a great help, Titus3:2. I have the Weggie's nose and the hearing loss, too, but think those would have happened anyway. It is a great relief to hear that I'm not such a freak (although I already suspected this), and that someone else has had sinuses that "self obliterated". I'm not glad it happened to you, but am curious, have you had any effects from this, positive or negative? Did you notice less mucus being generated or an improvement in allergies, or no more infections in those sinuses? Despite the saddle nose, is your nasal cavity behaving OK, flushing out the mucus it produces? And was there any change in your voice as a result of losing those air pockets?

Sometimes I wonder if a lot of us could have some of this going on but it just hasn't been explained to us. And oh, I see you already answered some of what I asked. Sorry. Glad to hear you've had fewer sinus problems in years and maybe I can expect the same, as my ENT implies.

**Alysia** · 04-17-2014, 05:17 PM

wow Anne, I really don't know what to say, because I dont understand it, and if these are good news or bad news

I wish I could help ....
maybe the question should be if you are feeling better with or without the sinuses

the vertigo might be an issue of the inner ear.
please update us more.
hugs and prayers to you

take care.

**annekat** · 04-17-2014, 06:33 PM

Originally Posted by Alysia

wow Anne, I really don't know what to say, because I dont understand it, and if these are good news or bad news

I wish I could help ....
maybe the question should be if you are feeling better with or without the sinuses

the vertigo might be an issue of the inner ear.
please update us more.
hugs and prayers to you

take care.

Alysia, I feel the same as you about it... don't know what to say. At least I know this is a real phenomenon that does happen to some Weggies, like Titus3:2 in the post above. I have found some things on the web and will share links when I'm sure they are the best I can find.

Right now it is hard to tell if I'm feeling better without the sinuses because I'm still having a flare and the ears and nose are still feeling pressure and fullness. Those are my only flare symptoms besides a little fatigue. Weird. And there may be some allergies thrown in there, too, just in other places than the sinuses. But my ENT says that I will do just fine without the sinuses, and will feel better. In fact, I've seen cases on the web where docs actually have methods of surgically "obliterating" the sinuses on purpose so they will no longer be causing the terrible problems they sometimes do. Not just for Weggies.

And the vertigo could be related to the flare and what feels like blocked ears. My ENT feels as you do that it is an inner ear problem, and that is the usual conclusion. But it seems to me that different things can affect the inner ear, like pressure from around or against it, that isn't really coming from the inner ear itself... my unprofessional viewpoint. Searching the web, there are many different possible causes of vertigo, and some disagreements among docs about what might or might not cause it. I found a couple who said earwax could cause it, while others said no. So it remains to be seen, or not. For a lot of people, including non-Weggies, it just comes for a time and then goes away and they never really know why. I hope I do get more of an answer than that.

**Titus3:2** · 04-17-2014, 10:12 PM

Good morning annekat, the biggest effect I see from our sinuses self obliterating ,and the wasting away of our nasal cavity is that there is nothing left to moisturize the incoming air.That certainly has had an effect on my voice.Zyrtec is a big help.After my second drug induced WG remission,WG activity ceased in my nasal cavity that was some 18 years ago.My turbinates are completely gone.I have continued to irrigate my nose twice a day,but gone are the days of pain,very little crusting,and discharge.I almost feel normal in that department.You and so many others on this forum are experts on WG,so maybe this will give you hope if nothing else.My ENT doc out of curiosity did a right maxillary operation,but as I stated before I do not remember if it was filled with bone or a cartilage like substance.Take care,annekat.