Disappearing sinuses

[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/er...tomography.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

[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.c...ear-rocks.html
thanks !
it is so nice that in your age plus WG you are feeling so good

[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.