always something!

[cjhnsn29]

Well after having a blood transfusion, I find out my WG has spread more. My WG is mostly in the face area and lungs. I know have to have another surgery due to the WG has spreaded in my jaw area. I am one of the ones that have the clapsed nose. Everytime I have a flare up it attacks my face area. Not sure how this surgery will pan out. Like I have been told this disease is one that keeps on giving. Lucky us! At least we I vent to each other.

CJ

[vdub]

This isn't any good! I think you are the first I've heard where it attacks the jaw. Are the blood vessels on the jaw muscles collapsing? Pain? Erosion? What's happening?

[Jaha]

I am so sorry that you had to have a blood transfusion and that now you have one more thing to deal with. I'm wishing you all the best with your upcoming surgery.

[cjhnsn29]

Vdub, my WG has been mostly in my face. My nose is collapsed and it had gotten my cheek bones. It also made my gums go over top of my teeth cause the blood supplied. It is making swallowen of my eyes. So I have a lot of pain in face and also lungs.

[annekat]

Vdub, my WG has been mostly in my face. My nose is collapsed and it had gotten my cheek bones. It also made my gums go over top of my teeth cause the blood supplied. It is making swallowen of my eyes. So I have a lot of pain in face and also lungs.

I'm sorry you are having these extreme problems in your facial area. I also have the collapsed nose and all the bony structures of my nasal cavity are eroded away to where I no longer have sinuses. True of some others on here, too. Not a problem for me, as everything is healed and causes no pain, except that I have double vision from my eyeballs losing support of some of the bone under them. I think my cheekbones are still intact. I have hearing loss. I've heard of people having problems in their teeth, gums, palates, etc., but not so much in the jaw. Sounds like maybe there is some aggressive bone erosion going on due to lack of blood supply in the area? Or is it damage to the muscles as vdub wondered? And what is happening with your eyes? How long have you had WG? What exactly will be done in the surgery?

[cjhnsn29]

Annekat, yes my gums were not getting enough blood supply which caused the gums to flop over my teeth and now I have to loose teeth due to it. The eyes get pressure from my nose not draining it all sits in there and builds up. For example I can watch tv for a short time or computers etc.The surgery is removal of some teeth due to me breathing through my nose while they are there they have to clean out cheek bone area.

[annekat]

Annekat, yes my gums were not getting enough blood supply which caused the gums to flop over my teeth and now I have to loose teeth due to it. The eyes get pressure from my nose not draining it all sits in there and builds up. For example I can watch tv for a short time or computers etc.The surgery is removal of some teeth due to me breathing through my nose while they are there they have to clean out cheek bone area.

Thanks for the explanation. I know some others on here have had problems with their teeth and gums, including loose or broken teeth. I had sore gums early on but it was cleared up with treatment. I did have to have some rotten and neglected wisdom teeth extracted, and the molars next to them, since the rot had spread and one just broke off one day. I'm not sure it was WG related, but it could have helped it along, at least. CTX helped my lungs a lot but didn't stop the erosion in the nasal cavity or damage to my ears. I guess the process had already gotten too far underway, as I already had a saddle nose at dx. When I flare, it's mainly just fatigue and some extra mucus and coughing, and gets cleared up with an increase in prednisone. Am on 15mg./wk of MTX, and Bactrim. The flares don't seem to actively attack any structures. It seems like the erosion that was going to happen already has. But reading about your jaw and teeth problems is scary. I hope you are getting the best possible care for your WG. I'm curious where you are located. I'm not getting the best care possible, but if I had the problems you do, I'd want to be sure I was. Best of luck to you with the surgery and other issues.

[Alysia]

Annekat, yes my gums were not getting enough blood supply which caused the gums to flop over my teeth and now I have to loose teeth due to it. The eyes get pressure from my nose not draining it all sits in there and builds up. For example I can watch tv for a short time or computers etc.The surgery is removal of some teeth due to me breathing through my nose while they are there they have to clean out cheek bone area.

Hi. I think that your wg is active and needs serious treatment. what meds are you on ?

[Debbie C]

Did Barbara also have wgs in your jaw or was that from some other thing. Anyway,CJ ,sorry to hear you are going thru all this. Like Anne said with all this I hope you have a good ent and a oral surgeon. When are you supposed to have this done ? Good luck and keep us posted. That all justs sounds so painful

[annekat]

Did Barbara also have wgs in your jaw or was that from some other thing. Anyway,CJ ,sorry to hear you are going thru all this. Like Anne said with all this I hope you have a good ent and a oral surgeon. When are you supposed to have this done ? Good luck and keep us posted. That all justs sounds so painful

Deb, are you referring to Barbara in Spain? I know she lost parts of her face, which showed externally in ways that none of the rest of us have reported, that I know of. I think she had another condition besides Wegs, but don't know what it was or which one caused that damage, if not both. I mainly remember she wore a patch over her nose to protect people from seeing it, but don't remember about her jaw. I think in her avatar you could see the nose patch but also a hint of a smile.