Disappearing sinuses

[annekat]

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]

http://www.wegeners-granulomatosis.com/forum/images/misc/quote_icon.png Originally Posted by renidrag http://www.wegeners-granulomatosis.com/forum/images/buttons/viewpost-right.png (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3738-nasal-discharge-7.html#post82843)
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]

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]

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]

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]

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]

wow Anne, I really don't know what to say, because I dont understand it, and if these are good news or bad news :confused1: I wish I could help ....
maybe the question should be if you are feeling better with or without the sinuses :unsure:
the vertigo might be an issue of the inner ear.
please update us more.
hugs and prayers to you :hug2: take care.

[annekat]

wow Anne, I really don't know what to say, because I dont understand it, and if these are good news or bad news :confused1: I wish I could help ....
maybe the question should be if you are feeling better with or without the sinuses :unsure:
the vertigo might be an issue of the inner ear.
please update us more.
hugs and prayers to you :hug2: 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]

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.

[Alysia]

maybe it can be better without them, like in Tonsillectomy, in which the tonsils are removed to prevent throat infections :unsure:

[annekat]

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. Thank you so much, Titus3:2. In my case, my ENT was pretty upbeat about my nasal cavity, said the mucosa were a lot more normal looking than before, and gave me the impression that it was functioning fairly well. he did not see what looked like WG activity or crusting, and encouraged me to keep up the good work of nasal irrigation. Of course I realize that things can change. But I feel somewhat encouraged that my nasal cavity will be OK and won't incur further damage. I'm not sure I understand what Zyrtec does for you; I was told I could take it twice a day for allergies. I hope my voice does not change. I still nedd to find out more about turbinates and whether I still have them at all. Thanks for the info, and you take care, too.

[Titus3:2]

annekat,I am very glad to hear your ENT doc is upbeat about the condition of your nasal cavity.You probably still have your turbinates,and that is good.I take Zyrtec for allergies.There probably are more people in the forum with disappearing sinuses.Maybe some will chime in.You are the only one I know of.Thank you,for the great thread.

[annekat]

annekat,I am very glad to hear your ENT doc is upbeat about the condition of your nasal cavity.You probably still have your turbinates,and that is good.I take Zyrtec for allergies.There probably are more people in the forum with disappearing sinuses.Maybe some will chime in.You are the only one I know of.Thank you,for the great thread. You are so very welcome, and I feel blessed that you have chimed in on this. I'm not so sure about my turbinates, as my ENT said I wouldn't be having much allergy problem in my nose any more, and I've gotten the feeling from research that turbinates have a lot to do with handling allergies in the nose and the feeling you would get from having those problems. But I'm still having some stuffy feeling in the nose, so this remains to be seen... we know docs can be vague and I need to run this by him at my next. appt. So, if your sinuses and nasal cavity are gone, where do you feel allergies? Although I guess your nasal cavity would still be a cavity and not filled in like the sinuses. So much to wonder about. My ENT says I'll still feel allergies in the eyes and ears and bronchii (asthma). Sorry for all the questions. I suspect you are right that others on the forum would have this process of sinus obliteration at least starting to happen. I hope to hear from them, too.

[BookNut]

I haven't read the whole thread, so this might have been answered. I am confused about what this is. I searched on Google and found something called "Silent Sinus Syndrome." Is that what you have???

I am glad that your ENT seems to be upbeat about it. If it means you will have fewer sinus complications, that is great!!

[NikkiNicole]

I will repeat what everyone else has already said. "Wow" and "I don't know if this is a good thing or a bad thing so I don't know whether to say sorry or congratulations!"
Are you in pain? Do you feel like it may cause problems? I mean, if it's going to mean less problems then YAY, but when I first read it I was shocked and worried. So I am full of mixed feelings for you.

[annekat]

Jacquie, I think I ran across Silent Sinus Syndrome and it might be something else, though I'm not sure. Try searching "sinus self obliteration Wegeners" or "sinus bony erosion Wegeners". Putting Wegener's in there always helps in a search, as some of these issues involve non-Weggies, but those articles aren't as helpful. Another term is "neo-osteogenesis", referring to an abnormal thickening or re-growth on the outsides of bones that are eroding at the core. Weird stuff, and searching it is hard and takes time, and I'll share some links when I can. Don't have a lot of time at the moment.

Thanks, Nikki. As you see above, another person on here besides me has this and is doing pretty well. From what I've read, it happens to a certain percentage of Wegener's patients. I can't give a number. I think sinus erosion is not uncommon in WG, though it may not always go this far. The ones who have it less developed may be having more problems than I will with no functioning sinuses. One article said, I hate to share for some of you, that this is more likely to happen when people have had previous sinus surgery. I have not, though. Don't feel too bad for me, think of it as like your appendix, it was something you didn't really need anyway and you are now better off with it gone. Getting a good description of what the sinuses are for is a little sketchy at best, and varies with whom you ask or where you look.

Yes, it is pretty freaky, but I am coming to terms with it and things could be a lot worse. They cause me no discomfort whatsoever. The stuffiness and inflammation I am feeling is all in my nose, ears, and eyes, and that is not too bad today, either. My voice is the same as it ever was, so far.

[annekat]

Here is a good link I found showing that weird bone changes in the sinuses, such as what has apparently lead to mine "self-obliterating", are not at all uncommon among Weggies. It is a report of a study done at the Cleveland Clinic of a group of WG patients with sinus involvement. It shows the CT scans of some of these patients, one of which showed "complete bony obliteration". The CT scans are confusing for me to try to make sense of. But it shows that what I have is not all that unusual; you may be surprised at the percentage that were found having these changes to some degree. And, unfortunately, they did find it to be more likely among those who've had sinus surgery, which as I said above, I have not. In any case, this makes me feel like less of a freak! Take a look, and take note of the keywords like bony erosion and neo-osteogenesis:

http://lcbaxterlibrary.tripod.com/ereserves/ent/computedtomography.pdf

PS... a disclaimer to the part about those having had surgery being more susceptible... I believe the study made it clear that they didn't find a cause and effect between surgery and bone changes.... it was more that there was higher incidence among those people, possibly because they had had Wegs longer and thus may have had more incidence of surgery. That would be including surgery that was done before dx, when they already had WG but didn't know it, I assume. I am not that good at reading these studies, so anyone may correct me about what it said.

[mishb]

I'm just catching up on lots of threads, although I did catch up on fb.

You have crazy sinuses Anne, but hey, if they aren't going to cause any big problems, with crusting etc, anymore then that to me seems like a good thing.

I actually think that it is time you went and saw a proper WG expert, so that you can get all of the answers you are looking for

[annekat]

Oh, I think you are right, Michelle.... the way my life is makes it very difficult for me to make such arrangements. But I do know of some possibilities for people more experienced than who is currently treating my WG.

I do think my ENT is quite competent and I should have been seeing him a lot more often all this time. Not to say that there might not be a more suitable one nor that he could take the place of a WG doc... he does not treat WG but does understand how it affects the sinuses.

I guess there is nothing all that bad about the way this has worked out. I have no expense or inconvenience of surgery, no pain, and no problems from my sinuses, as you say. I have to say from what I've read above, I could not be too isolated a case and many of us may not be fully aware of this process going on, and that this can happen.

[laser]

Annekat, Hi,
I am sorry to hear you are having such problems with your sinuses. I to had terrible sinus problems. My GP sent me to have a MRI instead of a CT scan because the MRI is a lot
more accurate than a CT scan. There was an infected module on the other side of my ear drum attached to my inner ear (I think). My ENT put a tube in my ear and went in
to remove the infected area. The tube fell out after a couple months and my sinus problems have subsided. Not telling you what to do but maybe a MRI is the answer to see the whole
problem.
Hearing has improved in that ear. I still suffer from tinnitus. That was caused by my stupidity, no ear protection at work.
Hope everything goes better for you. Good luck!

[annekat]

Actually, laser, technically I'm not having any sinus problems. My sinuses have "self-obliterated" and ceased to function and according to my ENT they will not be causing me any more problems such as infections, mucus and crusting, etc. I do not need them back. I went in for the CT scan for an entirely different reason, because I was having vertigo, and also feeling some inflammation from a flare and allergies, and the doc wanted to see if there was fluid buildup, for one thing. This condition was brought to light in the process of that. I don't think there is a need for an MRI, as my ENT knows and understands what is going on in there. He does not think the vertigo and ear problems are related to this.

It is just that it sounds so freaky that it should be a big problem. But apparently it isn't. And for that, I'm thankful, in light of the numerous serious problems that other Weggies I know of are enduring. And the study linked above from the Cleveland Clinic shows that these bone changes in the sinuses are not at all uncommon in Weggies. In cases where the sinuses do not completely self obliterate, I would expect there to be more problems.

[Lilly]

I have no sinuses left either, just an open cavity that I keep clean by irrigation. The wegeners attacks your tissue and basically eats it away. When I had my nose surg they used cartlidge to build up my nose, and the wegeners had destroyed all the cartlidge within months. So I assume over time, We Weggies who are mainly upper area attacked, It sometimes takes your entire sinuses like ours! Its crazy!!!!! But I go to my eent every 2 or 3 months to have him get the crusties out in the back that I cannot reach by irrigation, and cleaning. Im like an old car, just keep fixing me when I break! Lol.......I just got out of the hosp. I will be writing about it tomorrow. I am exhausted. But all my weggie friengs NEED to KNOW what happened to me so it doesn't happen to them! I was in the hosp for 6 days, and am still healing. Ill talk to you tomorrow!

[annekat]

Lilly, I think my situation is different, though I still don't understand it. The spaces where my sinuses were have been closed up by bone and other tissue, apparently. It is called "self-obliteration" and it is like I never had sinuses at all. Some people are born without some of their sinuses; they are congenitally underdeveloped, or undeveloped, so it would be like that. But I had sinuses and now there is not even any air space there for stuff to collect in and cause problems and pain. The ENT did use the term "open cavity" and I'm not sure why, unless he meant it would be an open cavity if those areas had not been abnormally closed off in this way. It is supposed to happen due to the way the bone erodes and in some areas actually builds new bone at the same time. Too weird. But he presented it as meaning I will have no more sinus problems for the rest of my life. I can live with that. My nasal cavity is still functioning OK, though I do have a saddle nose, and he seemed pleased with how it looked, says it has improved, even. I am still confused, as I just found this out, and will have to quiz him some more at my next visit.

PS/Edit: He actually used the term "common cavity", not "open cavity", which could be the same thing, except mine is not open, there are no air spaces where my sinuses were.

[annekat]

I did not mean to give the impression that my saddle nose has improved in appearance.... that doesn't happen. I meant my
ENT said my nasal cavity has improved in appearance and function.

[annekat]

Lilly, I see you are browsing this thread. This is still so weird to me, and looking back, a lot seems unclarified in what I wrote. My ENT described a process by which the bone is eroding at the core but thickening on the outsides at the same time. What I seem to be getting is that while the sinus bones are eroding, as many or most of ours have, creating common cavities and whatnot, this concurrent thickening, which happens in some but not all cases, can cause buildup of more bone along with other tissue, maybe, which can fill in areas of the sinuses, and possibly obliterate the air pockets altogether. These obliterated areas may adjoin with areas that are still open, such as the nasal cavity, creating a partially obliterated common cavity. I don't know if this is right at all but it is the only sense I can make of it! Just too weird.

[Alysia]

you are the Lady of Mystery, Anne.... :wink1:

[annekat]

you are the Lady of Mystery, Anne.... :wink1: Actually, I'm not... I'm just trying to describe something that I don't understand and get it across to people that this is not the same sinus problems they have. What they have is worse, more painful, and more troublesome! So why am I complaining? Because this is a very strange phenomenon and I'm trying to understand it because that's the way I am! If I'm trying to tell someone about it I'd like to be able to say the right things.

Apparently the Cleveland Clinic thought this subject of the variations in bone erosion and regeneration in the sinuses of Wegener's patients was important enough to host a study on it with some of their patients. I cited that link above. Some of those had the "bony obliteration" that I have, others had lesser degrees or other kinds of bone erosion without the regeneration. I am just annoyed that more of us don't know more about this stuff because it seems like docs don't tell us much... it seems like we are just vaguely aware that there is erosion and destruction going on in our sinuses but don't really know what that means or that it can manifest in different ways. If it gets really bad like Lilly's, we are definitely aware of it, of course. I don't even know if what I have is anything like Lilly's, who also says she has no sinuses.... if it is the same, why is she having so many problems for years with her "open cavity" while my doc is telling me I also have a common cavity but my former sinuses are so closed off with bone and tissue that there's no room for any problems to develop and I'll be trouble free for the rest of my life?

[Alysia]

I hope you can be troubles free the rest of your life.... the erosion of parts is also connected to saddle nose, in which the bridge is eroded....
anyway, I understand that it is not easy not to figure out what it means and if it is better or not, and also to be a bit "different" even here.... I felt like that with my colon involvement untill I found Rose and Inge with it, here, and others on fb...
anyway, Anne, we love you with or without sinuses :hug2:

[annekat]

I hope you can be troubles free the rest of your life.... the erosion of parts is also connected to saddle nose, in which the bridge is eroded....
anyway, I understand that it is not easy not to figure out what it means and if it is better or not, and also to be a bit "different" even here.... I felt like that with my colon involvement untill I found Rose and Inge with it, here, and others on fb...
anyway, Anne, we love you with or without sinuses :hug2: Thanks, Alysia... I knew about the saddle nose being from erosion, and that happened early on and is fairly common with Weggies...... but this other stuff happened in different areas and I don't even know when or how long it took. There might even be people on here who have this and don't even know it, who are doing pretty well with their Wegs and not having sinus issues any more, and that is great! I did feel better when I found out that Titus3:2 has it, and I'm convinced it is the same thing and I'm not alone in having something unusual.

It bothers me a little when people don't seem to read the whole thread and then jump in and talk about it like it's the same as what they have. But since what they have is worse, I should feel bad for them and not annoyed. I guess I should go to bed now.

[Alysia]

good night Anne :biggrin1:

[drz]

Here is a good link I found showing that weird bone changes in the sinuses, such as what has apparently lead to mine "self-obliterating", are not at all uncommon among Weggies. It is a report of a study done at the Cleveland Clinic of a group of WG patients with sinus involvement. It shows the CT scans of some of these patients, one of which showed "complete bony obliteration". The CT scans are confusing for me to try to make sense of. But it shows that what I have is not all that unusual; you may be surprised at the percentage that were found having these changes to some degree. And, unfortunately, they did find it to be more likely among those who've had sinus surgery, which as I said above, I have not. In any case, this makes me feel like less of a freak! Take a look, and take note of the keywords like bony erosion and neo-osteogenesis:

http://lcbaxterlibrary.tripod.com/ereserves/ent/computedtomography.pdf

PS... a disclaimer to the part about those having had surgery being more susceptible... I believe the study made it clear that they didn't find a cause and effect between surgery and bone changes.... it was more that there was higher incidence among those people, possibly because they had had Wegs longer and thus may have had more incidence of surgery. That would be including surgery that was done before dx, when they already had WG but didn't know it, I assume. I am not that good at reading these studies, so anyone may correct me about what it said.

Good reference article but like most research projects indicates the need for a lot more research to find more definitive answers.

[annekat]

Good reference article but like most research projects indicates the need for a lot more research to find more definitive answers. True, drz, but for me, this was offered as some kind of proof that this really can happen, since it sounded so weird. I was pretty freaked out when the ENT told me my sinuses had been closed off with abnormal or atypical bone growth, but then relieved when he told me I'd have no more sinus problems for the rest of my life. I'm over the freaked out feeling now and feeling lucky that I have this instead of the continuing, painful sinus issues that many have, and wishing they could get some relief, too.

[Titus3:2]

annekat,I was looking at my CT Scan which describes disappearing sinuses.Imaging demonstrates complete opacification of the paranasal sinuses including frontal ethmoid maxillary and sphenoid air cells by reactive bone formation.There is more,but basically the sinuses have been obliterated by bone.The nasal cavity is open.

[annekat]

Thanks, Titus. I've still been mulling this around in my head, trying to understand it. "Reactive bone formation" gives me another term to look up and another angle on trying to describe it. I think my CT scan looks just like yours; my ENT says all the sinuses were involved and that the nasal cavity is still open. I understand the sinuses being opacified on the scan, but I'm wondering why, if it is bone, it doesn't look more white as does the original bone showing in places around the margins of the sinuses. I'm wondering if there is other tissue in there besides bone, or if the new bone is possibly inferior and showing up as not as dense. Or something. My ENT described a process of bone eroding on the inside and thickening on the outside at the same time. This seems to be part of what is described in the study at CC cited above. But I'm still having trouble visualizing it. More questions for my ENT when I see him in a couple of weeks.

[mr.g]

Hello Anne. Are you still having issues with VERTIGO? If so, search for the thread I previously sent a year or two ago. It was on EAR ROCKS, Otoconia, medically known as BPPV, Benign Paroxysmal Positional Vertigo. I think the thread was titled "ear rocks." My Group Health ENT gave me copies of their literature and I posted info from the lit on dizziness and balance. When I get dizzy I do some head turning exercises and soon I am fine. It works for me. Check out my thread?

MY UPDATE: I AM DOING REALLY WELL. I am back playing and coaching senior softball, I am almost 81. I have lost 21 pounds but only a little off my pot belly. I can now play four games a week. I am down to 5mg of Prednisone a day.... Coffee someday?

[mishb]

MY UPDATE: I AM DOING REALLY WELL. I am back playing and coaching senior softball, I am almost 81. I have lost 21 pounds but only a little off my pot belly. I can now play four games a week. I am down to 5mg of Prednisone a day.... Coffee someday?


Mr g, you are awesome. That is very impressive :thumbsup:

[Alysia]

Hello Anne. Are you still having issues with VERTIGO? If so, search for the thread I previously sent a year or two ago. It was on EAR ROCKS, Otoconia, medically known as BPPV, Benign Paroxysmal Positional Vertigo. I think the thread was titled "ear rocks." My Group Health ENT gave me copies of their literature and I posted info from the lit on dizziness and balance. When I get dizzy I do some head turning exercises and soon I am fine. It works for me. Check out my thread?

MY UPDATE: I AM DOING REALLY WELL. I am back playing and coaching senior softball, I am almost 81. I have lost 21 pounds but only a little off my pot belly. I can now play four games a week. I am down to 5mg of Prednisone a day.... Coffee someday?

then this is your thread : http://www.wegeners-granulomatosis.com/forum/general-wg-chat/2396-dizziness-vertigo-bppv-caused-ear-rocks.html
thanks !
it is so nice that in your age plus WG you are feeling so good :thumbup:

[annekat]

Hi, mr. g. I haven't had any more vertigo since the ENT removed a huge chunk of impacted ear wax from my right ear, which has a caved in drum from WG., so anything pressed up against it might be putting pressure on the inner ear. Just a theory, and I'm hopeful that was the cause, but am not counting on it, am still watchful for signs of dizziness, and carry the med with me at all time. My ENT has also not reached that conclusion about the ear wax and I have an appt. to see him again to discuss the vertigo and my ears in general. I'm sure he knows about the ear rocks and the exercises and may suggest something in regard to that. Thanks, Alysia, for including the link, and I'll bookmark it, if I haven't already.

Coffee some day would be nice. I am just so busy and stressed out and have many problems to deal with, so it is hard to commit to a time. I don't like to get up early if I don't have to, and when I take free time, it is usually to rest. But feel free to keep mentioning it to me and maybe we can do it sometime! I, too, am impressed at how you keep going and doing great things like coaching and playing softball with WG, especially at your age.

[me2]

I have had vertigo for the first time recently. Thanks for telling Anne about the exercises- I would have never even dreamed to look for such a thing. And thanks Alysia for finding the link, I have bookmarked it too in case I get vertigo again. I'm glad you are getting relief from it Anne- especially now that I have first hand experience of it. ha
Go Mr G!!!! You are indeed amazing.

[Alysia]

I am just so busy and stressed out and have many problems to deal with.

take care, Anne, Don't over do, and don't let things bother you too much. your health is the most important. if we can help you with something, please let us do it. :hug1:

[annekat]

Kirk, I didn't know you had had vertigo recently! You are such a WG veteran that you don't tell us half the stuff you are going through, I guess. I'll be interested to hear more about it the next time you come over to pull weeds and drink tea!

[annekat]

Thanks, Alysia.... I had good pottery sales over the weekend, which eased up some of the stress. Just getting on here or on Facebook and talking to all you caring people really helps me a lot, too! I've taken it easy so far today and will focus on my health and well being.

[lag713]

Do you sell your work on Etsy or another online forum? I won't be in Olympia anytime soon but I can always shop online. :biggrin1:

I hope you're still taking it easy and focusing on yourself!

[annekat]

No, I don't sell anywhere but the Oly market. I understand completely about your not being able to get here anytime soon. I will work on getting together some good pics to send to you and can always ship something or just wait until you are able to come down. Etsy would be a good thing to try, just haven't had the energy to get organized to do it. I've been doing the Oly market for over 20 years so don't have to think too hard about how to organize for it or do it, although it is more physically demanding than selling online would be.

Since Mother's Day weekend is coming right up, I'm trying to prepare for that and was hoping to have some new stuff, but I may just have to go with what I already have. Was too tired yesterday to do a thing; today, still tired, but may be able to start on some new stuff, if not for the weekend, for next week. It would be a small, hastily produced batch if I was to fire it this week. Sometimes it is best to go with what my body tells me, I need some rest, and can still work, but need not push myself. Thanks for your support.

[lag713]

I'm in Connecticut so making a trip to Washington is probably not going to happen very soon. I went to Seattle a few years ago and thought it was lovely. It was my first time in WA. I loved the fresh seafood and produce. Just awesome!

A friend of mine makes jewelry and sells it at local farmer's markets as well as Etsy. She seems to like it but charges more on Etsy because they take a piece of what she makes. She's using the proceeds to pay for her wedding. She told me that she even sold a few pieces to people in other countries as well. It may be worth looking into when you feel like you have the extra time/energy (but who has extra time or energy!) :wink1:

I know what you mean about the fatigue! I'm sure you have great stuff for Mother's day shoppers without the new pieces. Always listen to your body and rest when you need to. I'm sure the new pieces are worth waiting for!

[annekat]

Thanks, lag713. I think I got you mixed up with Lisa from BC who has also been asking me about my pottery. So if you are in Connecticut, of course you can't just swing over to Olympia, WA. Maybe you know KimH on here, also from Connecticut. She tells me about a very good and accomplished potter who is in or near her town and sells his work out of his own studio and maybe at an outdoor market, too. You may know of him. If you and Kim haven't connected, that would be a good thing!

Anyway, I hope to get more going so that forum members can see my work... not that I'd ever give them the hard sell. I might start a separate thread if I can get it together.

[lag713]

KimH and I are acquainted now. I'm lucky to have her wonderful recommendations for physicians. I wish they were in CT but NYC isn't too far away. I don't know of potters in CT but I think I drive by a small studio near Mansfield, CT. Unfortunately, I'm always running late to something when I drive by. I love supporting the local arts! Although I can only do so much right now as a poor grad student.

I would be interested if you started a thread with your work. No hard sell needed. :wink1:

[annekat]

Glad to hear you and Kim hooked up. Maybe she will introduce you to the potter she told me about, as I think she knows him personally. That is if you ever visit her town. I might put a few pots on here, if not on a separate thread, on the "Weggie Talent" thread that is here somewhere... also, I just joined a Facebook group for Wegener's people in the creative arts. Really there is no excuse for me not posting something.... I'm sure I can find something, just not always happy with the image quality. Just right this minute isn't a good time. Will work on it. Yesterday I had too much fatigue to work but today have started on a few things.

[Debbie C]

Anne.sorry you have been feeling so lousy.I don't understand what is happening with your sinuses but I quess it is a good thing that the dr. said you will not have any more issues with them. I'm glad you had a good day at the market but please don't over do it and try to get some rest.

[annekat]

Thanks, Deb... I'm just having a little flare, according to my bloodwork, and the numbers have come down some since I've been taking more pred. I don't blame you for not understanding the sinus thing... it's apparently something that happens occasionally, and it happened to titus3:2, as well, where there is so much bone erosion and crap happening in the sinuses that something happens called "reactive bone formation", where new bone actually grows and fills in the cavities where the sinuses used to be. So, since I can no longer have problems there, this flare does not involve the sinuses at all. In fact, I haven't had that many unusual symptoms except the fatigue. I've had stuffiness in the ears and nose and just one Wegs rash blister on my arm, and a lot of coughing from junk getting into my windpipe. And the vertigo, which may or may not be related to Wegs at all, and hasn't recurred now for awhile. This fatigue is what currently seems the most unusual, since it reminds me almost of when I was first sick. But if I take naps and get enough sleep, I do OK. I have no pain, as many on here do, and am still a lot better off than many.

[windchime]

Sorry to hear you aren't feeling well Anne. Take care and get your rest. You know that's the best way to work through a flare. :hug2:

[annekat]

Thanks, Cindy! Yep, you are so right. I'm lucky to have a flexible enough schedule, being self-employed, that I can take naps when I need to. And I've been sleeping well at night despite the increased pred. So, keeping the stress under control is the last hurdle, and that is not as bad right now as it was, say, a week ago. So nice to have you guys thinking of me and sending hugs.

[Alysia]

oh. Anne. I am sorry that you are not feeling well :sad: please rest as much as you can. listen to your body and don't over do. I am sending to you my prayers and lots of hugs :hug1:

http://www.iredellmemorial.org/Resource.ashx?sn=GetPlentyOfRest

[annekat]

Thanks, Alysia, it is mainly fatigue, and we know how to take care of that! Have worked on some pottery but won't stress about having it done by a certain day.

http://3.bp.blogspot.com/_CUnbEa-qJaA/TBjxdu1OGmI/AAAAAAAAGVo/7FlGElk-zBs/s200/cat+nap+1.jpg