Frustrated and Scared

[debhaz22]

(My very good friend Deb C who I met on here convinced me to write here for advice:)
I had a nasal biopsy and cauterization almost 8 weeks ago and the ENT who did the surgery told me honestly he has no idea why it's not healing at all. He keeps insisting it's WG but the biopsy came back inconclusive. I even saw my GP and she gave me a hug and said I'm sorry, you have something but I just don't know what it is. I am terrified. I have been to Cleveland Clinic with a probable limited WG diagnosis and have had a call into Villa Forte 3 days ago with no call back. Can I ask you all how your nasal symptoms appeared? Did the clots, scabs...in your nose occurred after a surgery or did they just start appearing? I also now have a huge nasal perforation. I have had a positive C-ANCA for at least 9 months but no PR3. Can anyone help? Please???

[Alysia]

hey Deb,
first of all BIG HUG to you to make you less frightened :hug1:
couple of things: nasal biopsy can be false negative. I had 2 that indicated "no WG" but I do have WG. no doubt.
yes, we have bleeding and crusting and perforated nose and all the depressing mess in the nose. I have saddle nose because the bridge of my nose collapsed from the inside.
it can be the result of wg active and not of the surgery.
the problem with "limited wg" is that sometimes docs underestimate it and dont give it enough treatment. what is your treatment ?
about the c-anca, it is indicative of wg when it is positive. the pr3 being negative means maybe that the c-anca is only mildly up. when it is extremly high then the pr3 is also positive.
I hope you will see your doc soon and get the proper treatment.
please update us.

[gilders]

Hi Deb
As Alysia said, nasal biopsies are often inconclusive. The problem (although good) is that it sounds like no other organs are involved. This means the drs can't biopsy or investigate another organ that might be showing WG activity.
Some drs would look at your ANCA and nasal issues and think it's best to treat you for WG even if you don't have it, rather than leave it to potentially get worse. But other's don't want to treat something that you "might" have.
If your drs don't want to commence treatment at this stage, what I'd suggest is the moment you get the slightest extra symptom of WG get straight on to your drs and tell them.

If you feel more comfortable on treatment and the associated side effects than waiting it out to see what happens, then let your dr know. It might take some pressure off him/her as they may be worried that if they treat you for something you later on find out you don't actually have, you might "kick off" especially if you don't cope well with the medication side effects.

[MikeG-2012]

(My very good friend Deb C who I met on here convinced me to write here for advice:)
I had a nasal biopsy and cauterization almost 8 weeks ago and the ENT who did the surgery told me honestly he has no idea why it's not healing at all. He keeps insisting it's WG but the biopsy came back inconclusive. I even saw my GP and she gave me a hug and said I'm sorry, you have something but I just don't know what it is. I am terrified. I have been to Cleveland Clinic with a probable limited WG diagnosis and have had a call into Villa Forte 3 days ago with no call back. Can I ask you all how your nasal symptoms appeared? Did the clots, scabs...in your nose occurred after a surgery or did they just start appearing? I also now have a huge nasal perforation. I have had a positive C-ANCA for at least 9 months but no PR3. Can anyone help? Please???

My symptoms are ALL SINUS! I never had any lung issues in the beginning. Crusts, scabs, bleeding and headaches were all getting worse as time went on before diagnosis. I had several nasal biopsies and NOTHING, every time. From what I've read over and over again 90% of the time, nasal biopsies are worthless for diagnosing Wegs. Eventually, my breathing started to get bad and then the chest x-ray led to more tests and eventually a full diagnosis from a lung biopsy. Oh, did I tell you that my ANCA was NEVER high enough to register with this latest flare up. Comes back negative at every test!

Take this advise from a guy who has one very screwed up side of his sinuses. My suggestion at this point is to start irrigating the daylights out of the sinuses. The more moisture that you can keep running through there, the less hard the crusts and scabs will be, and the more relief you will feel. Mix 1 tsp pickling salt (not iodized) with 1/2 tsp baking soda per 1 liter of distilled or filtered water. Mix it in a BIG pitcher and run at least a liter as often as you can stand it. I was told once that you cannot over rinse sinuses. My regimen for the last year and a half is 3 liters twice a day. I run mine through a WaterPik type device. If I miss a turn, I'm miserable about 4-6 hours later with a dry nose and sinuses.

Hang in there!

MikeG-2012

[Tmp521]

Hi! My daughter did the sinus biop as well and the results were similar..."inconclusive but consistent with Wegeners". She had (notice that's past tense) ulcers in her nose. Anyway, ENT has her on a nose spray everyday. Name brand is "ocean" generic is saline nasal spray. It's a nasal moisturizing spray and sold OTC just about anywhere. Kinda like putting lotion on dry skin, it helps to keep the inside of your nose from scabbing,causing irritation and more damage. I've noticed it has also helped to cut down on bleeding when she blows her nose so it must be helpful. Doc had her start on it the day after the biop to also help with healing from where she took a small sample. Hope this helps! Good luck!
Tara

[Debbie C]

Hi Deb, glad you came back on here to get some advise. I still don't like the idea you have a hole in your spectrum and nothing is being done about it. For all of you that have these nasal issues can she still rinse like that with a hole in her nose ?:hug2:

[MikeG-2012]

Hi Deb, glad you came back on here to get some advise. I still don't like the idea you have a hole in your spectrum and nothing is being done about it. For all of you that have these nasal issues can she still rinse like that with a hole in her nose ?:hug2:

I have a small perforation in my septum Debra, and I don't have any issues. If anything, it keeps that area clean, moist and uncrusted.

[SpaceflightAddict]

Hi Deb, glad you came back on here to get some advise. I still don't like the idea you have a hole in your spectrum and nothing is being done about it. For all of you that have these nasal issues can she still rinse like that with a hole in her nose ?:hug2:

You absolutely can rinse with a hole in your septum (or no septum at all). My septum is destroyed, but nasal rinsing is still very productive and effective.

[Tmp521]

Hey Deb C...if she feels better asking her doctor then by all means she should. My thinking on this, and this is just the way I see it, when you use a sinus rinse or spray, what happens to all or at least some of it anyway? It goes in your nose through your sinuses then at least some goes down the back of your throat. To me, if that isn't harmful and so many ENT's suggest Weg's patients use it for sinus/nose issues, I don't see how it could hurt. Looking over my daughters bottle of nose saline it has on the bottle that it's a nose moisturizer. The way our doc explained it made total sense to me. At the very least maybe it will help the hole from getting bigger or help prevent the beginning of another. Again these are just my thoughts. I hope this helps.

[Debbie C]

Tmp521..she has seen a few drs. and is not getting any answers,her pcp doesn't know what's going on since she had work done by an ent several weeks ago and things are not healing, so she is having her get second opinions from a different ent and rheumy next week.I don't have those kind of sinus issues and don't use rinses I thought someone on here with more knowledge about it than me might be able to give her some answers.

[Tmp521]

Deb...I just mentioned in an earlier post that sometimes the Drs just give you a blank stare and reply "it's just part of the disease". At which point I just want to slap them and say "YOU are the Doctor and THAT doesn't answer my question!" lol My daughter has 5 different specialist. I have presented at least 2 problems to all 5 of them and that was the response I got. It was very obvious they honestly had no idea what to say. Sometimes I think this thing is old enough to be known in the medical community but still new enough that sometimes the Drs themselves don't know what to do. Often times I feel like I'm looking for a needle in a haystack. I know there's an answer out there,somewhere, but it'll take a miracle to find it. A second opinion definitely can't hurt. However it almost sounds to me like her dr has an idea how this is all gonna go down and doesn't want to be the one to say so. Or it could be doc truly doesn't know how to treat it. From what I've seen and read when your nose is affected in such a way that you begin to develop sores and ulcers then holes other than the saline spray there's not a lot anyone can do. I just believe in the spray because I saw first hand how it can reverse some of the damage but it must be done before it goes too far. I would imagine once the holes are present the spray will keep everything moist enough so maybe it will slow or maybe even stop any further damage. Either way as I said a second opinion certainly won't hurt. I would suggest though that she get a copy of the path report done on her sinuses along with any media they may have on file like MRI, X-ray ,etc and take it to her new doc so she'll be prepared and not have to wait on the new ENT to get records from the other one.
Please keep me posted!
tara

[drz]

My Weg doctors have told me that nasal and sinus symptoms tend to be most resistant to treatment when compare to lung or kidney involvement. Maybe because there is more blood flow in those organs. I guess it is sort like toenail fungus which is also highly resistant to most types of treatment and a common side effect of suppressed immune system. I also suspect they are less willing to use the most aggressive treatment for nasal and sinus symptoms since doctors don't view it as life threatening like activity in lungs or kidneys. Same as for toe nail fungus.

I do have residual nasal symptoms which my doctors tell me is from the Weg damage to sinus areas so they won't go away but they do fluctuate and yes frequent rinsing does helps.