It's definitely a flare up

[SpaceflightAddict]

There is nothing quite as satisfying as my ENT grabbing the endoscope and going digging for gold. It's too bad that my sinuses have stopped crusting up, I really enjoyed the deep cleaning that I was getting. At my last appointment he said he does not need to see me for at least three months since everything is healing so well.


I must look into this Water Pik, I am getting tired of refilling the NeilMed bottle over and over again.

[annekat]

There is nothing quite as satisfying as my ENT grabbing the endoscope and going digging for gold. It's too bad that my sinuses have stopped crusting up, I really enjoyed the deep cleaning that I was getting. At my last appointment he said he does not need to see me for at least three months since everything is healing so well.


I must look into this Water Pik, I am getting tired of refilling the NeilMed bottle over and over again.

Andy, it seems like you are healing and recovering exceedingly well, given the amount of damage it sounded like you had in a short time. I don't think my sinuses will EVER stop crusting, although at this point it is not so much crusting as just great big blobs that just keep coming! Still lots for the ENT to dig out if I didn't do the multiple rinses. I think it has lessened some, though, over the last year or so.

My ENT does not give me the feeling that my "sinus destruction" can ever repair itself; the lost bone cannot be rebuilt, etc. So there will always be extra space in there to become filled with mucus. That is my take on it, anyway; I really have no clue what it looks like or what is going on in there. In your case, it happened very fast, and you were dx'ed early, as I remember, so maybe the tissues involved have deteriorated less and can regenerate themselves more easily. I hope so.

[SpaceflightAddict]

Andy, it seems like you are healing and recovering exceedingly well, given the amount of damage it sounded like you had in a short time. I don't think my sinuses will EVER stop crusting, although at this point it is not so much crusting as just great big blobs that just keep coming! Still lots for the ENT to dig out if I didn't do the multiple rinses. I think it has lessened some, though, over the last year or so.

My ENT does not give me the feeling that my "sinus destruction" can ever repair itself; the lost bone cannot be rebuilt, etc. So there will always be extra space in there to become filled with mucus. That is my take on it, anyway; I really have no clue what it looks like or what is going on in there. In your case, it happened very fast, and you were dx'ed early, as I remember, so maybe the tissues involved have deteriorated less and can regenerate themselves more easily. I hope so.

I am still getting mucus coming out, but it is thin and watery and clear now when I do my rinses. I think I am keeping it moist enough in there that nothing ever gets the time to crust up. Ever since I started using a saline gel spray at night, it seems like things flow from my nose much easier the next morning. I do have some bone destruction in there, so like you things will never be the same, but my ENT is very happy with how things look in there all things considered.

I see a separate ENT in the same office for my ear and hearing issues, and he is not as optimistic as my sinus ENT unfortunately. My left ear got tore up hard, and will never work the same again for sure. Some sort of surgery on my ear is most likely in order once the wegs is in remission. You should read the CT scan and MRI reports from my hospitalization, its pretty gruesome.

[Alysia]

You pass with flying colours Mike......

There are days when I think I have got everything out then later on in the day I feel something in there I try to pick out and nothing is there. So then I rinse a few times with 2, 3 and 4 liters.....then BAM, the mother of all boogers comes out......4 inches long, 2 inches wide.....YIKES. This happens at least once a month besides the many regular large boogers I get out each evening and morning.

I add my applause to Mike's bow
you are an expert, Phil, in rinses and boogers, as well as your other expertises

when I have the feeling that something really big is inside and refusing to get out, I just wait day or 2, trying to breath "between", and then I can blow it out after hot shower.
I don't use rinses at all, I can't bear them because of my ears.
I must say that RTX is clearing my nose more and more. especially now after the 2nd round of it.

[drz]

We are all going to have to try the WaterPik!

They had a battery one that was piece of junk but they may have fixed the design flaw by now. The batteries in it corroded and killed the unit within a few weeks.

[MikeG-2012]

They had a battery one that was piece of junk but they may have fixed the design flaw by now. The batteries in it corroded and killed the unit within a few weeks.

The battery ones were worthless, because they held almost the same amount as the squeeze bottles. Didn't want to admit that I had tried one of those once. Complete waste of money. All that extra cash JUST so I didn't have to squeeze the bottle! I felt robbed! (-8. LOL!

[MikeG-2012]

UPDATE:

Week three is here! Tomorrow is #3 RTX infusion. In the past two weeks, I've been feeling stronger every day. The lungs are still down quite a bit, and its hard to get a good breath some times. But, I feel like there is a little improvement every day. I still get winded very easily though. I managed to go back to work part time and have been OK doing so. Walking around campus has been a chore, but it gets me out in the fresh air, up and active, which I wouldn't be doing at home. Sinuses are clearing pretty nice too. All in all, its been a decent few weeks. I relly get tired quickly--crash is more like it. The crashes seem to sneak up on me and get me by surprise. I'm intentionally not trying to over-do it this time and get the recovery I need, so the crashing is surprising me how fast it comes on.

More updates to come...

[Il_Randyb]

Congrats on Week 3 of RTX, I had 4 infusions this summer and all went well for me. On imuran now and Wegener's is under control.

WRT sinus clearing, I had sinus surgery summer of 2012, did not realize I had Wegener's then. The surgery opened up my sinuses and once we got Wegener's in check my sinuses cleared dramatically. Now I learned a lot during that time about how to help myself. I used the neti pot, the neti bottle and never liked them much at all. Then my wife came home with some saline solution in an aerosol can. Once I figured out how to use it properly WOW!!!! For me a hot shower is required, I wait till I am finished with everything else and then I grab the saline solution and spray it up each nostril. I hold it in for a while to let things loosen. The host shower steam helps a ton as well. Then I blow one nostril at a time and I can tell if it is flowing free or if something is in there. I do that routine several times until I am sure it is all clear or I think if i try harder I'll just cause a nose bled. For the former case what happens is later in the day it loosens up and comes out when I blow my nose.

This method has worked well for me and my sinuses are only a minor nuisance at this point.

You can buy these aerosol cans at Walgreens I know for sure btw.

[annekat]

I'm glad to hear things are going so well, Mike!

[MikeG-2012]

I'm using 3 liters of saline twice a day through a waterpik. I'm well versed on sinus health! (-8. Mine are more than a nuisance, and I am afraid, will be for the life of this disease...

I'm glad to hear that others are and have done well after RTX. I'm looking forward it finding a normal again...