sinus surgery question

[makabe]

A little background first: I'm newly diagnosed (actually still waiting for everyone to agree, but every doc says they see no other explanation for everything I've had going on for 18+ months...)

I went to my ENT to schedule a sinus biopsy per my rheumatologist. He isn't sure it will be conclusive, of course, but still wants to do it. My CT scans from two weeks ago show what they say is 100% blockage of both left sinus cavities. On the right, one is 50% blocked, one is almost clear.

I had a balloon sinuplasty just 10 months ago. At the time, the surgeon said I had very little blockage. He said he'd never seen such deterioration in such a short time. He basically said it had to be "cleaned out" if they were already going in to to biopsies since I will definitely get repeated infections in the state I'm in. He was also worried about septum collapse. He will also repair my deviated septum for the second time and deal with some turbinates.

My question is this: I've heard sinus surgery isn't always a good idea with active Wegs. It would seem in my case, though, that no one is sure how active I am right now, though I am only on pred and Bactrim at the moment. I've also read that what appears to be recurrent sinusitis is often Wegs itself.

Am I understanding this correctly? He seems very assured that this is the only course of action and I could sure use the relief from all the headaches and nonstop sinus drainage. Is this safe to do before I know exactly what the state of the Wegs is? I am really starting to feel like no one is ever going to just make a decision about me and treat me so I can feel better!

TFL!

[Al]

....I am really starting to feel like no one is ever going to just make a decision about me and treat me so I can feel better!

Well, Makabe, feeling better is a good first step!

I can't speak to the surgery itself (others on the forum can tell you more, from first hand, or nose, experience). But let me ask you a few questions to get things straight: So, the confirmation of your diagnosis awaits the biopsy? And the surgeon wants to, so long as he is invasively gathering material for the pathologist anyway, do some repair work? Do you have other wegs symptoms or indications (blood tests for ANCA, inflammation, etc.)? These things will help sort out the overall medical strategy, and perhaps help you in relating to your medical crew.

Al

[Dirty Don]

Hey makabe,

I'm confirmed WG as of 8/11. Mine is in my sinuses...for the most part anyway. I've had a 'deviated septum' operation recently, as well as Eustachian improvements. Not like a sinus cavity, but I can tell you that the newest procedures the ENT used left little or no blood, no pain, no swelling on the exterior, and very little soreness. All it was was a camera and a very small sharp knife!! LOL...works I guess...nose feels better! I'm on pred and mtx currently.

IF it may make you feel better and there's no danger, at least statistically, then may be worth it to feel better!! Best of luck!

[Sangye]

I remember Jack telling people to be very cautious about having sinus surgeries. He'd had them early on and they left him with destroyed sinuses.

In general it's not a good idea to do any type of repair work (eg deviated septum) with active Wegs as healing is a major problem. Is this ENT a Wegs specialist? If it were me, I wouldn't let anyone else do surgery like that.

[Dirty Don]

I remember Jack telling people to be very cautious about having sinus surgeries. He'd had them early on and they left him with destroyed sinuses. In general it's not a good idea to do any type of repair work (eg deviated septum) with active Wegs as healing is a major problem. Is this ENT a Wegs specialist? If it were me, I wouldn't let anyone else do surgery like that.

I have heard the same Sangye. It took the doc well over a month to convince me of the possibilities here. She, it turns out, was correct. Yes, the ENT is a Wegs specialist...Dr. Devyani Lal. Basically, the septum surgery was simply to cut away the offending cartilage, even taking the entire septum strip out if necessary, then cutting and wrapping and sewing the mucous membrane running down both sides. This procedure, evidently, allows the body to do its own packing, thus cutting down on bruising, swelling, and profuse bleeding...was interesting. And, although the septum seems successful, the Eustachian process wasn't as successful. These procedures were not done to control the disease, but, rather, the damage done by the disease already. I'm better off to date with it than without it. As for risk of infection, etc., pred was tripled for 4 days then tapered for 12 days, am now back to normal pred dose. No infections, no damage I can sense, yea!!!

Hope all is well!

[Sangye]

It's a big risk. Increasing pred increases the chance of infection but it's necessary to keep down the inflammation, which can also lead to infection. Glad it worked out well for you!

[Dirty Don]

It's a big risk. Increasing pred increases the chance of infection but it's necessary to keep down the inflammation, which can also lead to infection. Glad it worked out well for you!

Thank you, I knew it was...I questioned till they knocked me out...it turned out good. Didn't know my sinus was that blocked! LOL...I did taper quickly and well, no side effects...Al told me to watch myself during a taper, and I have...I was also on some heavy duty amoxycillin like antibiotic for 5 days...forgot about that, horse pills!!!

[mishb]

My specialists also wouldn't commit to my diagnosis until I had the biopsy (yes, all blood tests pointed to WG).

I hadn't started on any medication yet, only mobic for joint pains, and therefore maybe the risk wasn't as bad, however the ENT did say that he could not do any type of repair work whilst he was in there because it could make things worse (possibly a saddle nose outcome, was one issue).

The biopsy itself, was done as a day procedure in the hospital under general anaesthetic, but was told I was only under for approx 20 minutes.
They took a biopsy from both sides and then my nose was packed with some type of disolving wadding that remained for a few days.
I went home about an hour after the biopsy and the only pain was not being able to drink or eat hot foods for 48 hours, no hot showers and could not lie down for the first 48 hours.
Other than that type of being painful to me, there was no actual pain, swelling, bruising at all.

For me, one very small granuloma was found very deep inside, but this gave them what they required and the treatment started. It was only some 7 or 8 months later that they now have changed their mind and say I may not have WG or I might have WG plus MCTD, or, if I had one more symptom, could be any number of vasculitis type conditions. For now they just call it ANCA positive vasculitis. To me, I am still a weggie.

I know a nasal/sinus biopsy is not always a very conclusive biopsy result (my ENT also told me this prior to the procedure) but in my case, it did help and I wouldn't hesitate in recommending it, but that's just my experience and you should weigh up all of the pro's and con's prior to making your decision.

I hope you get a definitive answer very soon.

[Al]

For me, one very small granuloma was found very deep inside, but this gave them what they required and the treatment started. It was only some 7 or 8 months later that they now have changed their mind and say I may not have WG or I might have WG plus MCTD, or, if I had one more symptom, could be any number of vasculitis type conditions. For now they just call it ANCA positive vasculitis. To me, I am still a weggie.

Michelle, MCTD (also called Sharp's Syndrome) has symptoms often indistinguishable from WG--or many other autoimmune diseases, for that matter. (It medical terms, it is an "overlap syndrome", because its symptoms highly overlap with other diseases.) It does not make much of a difference what they call it, since the treatment is the same. I think that the ANCA-positive designation means more on some level, but even then, we need to remember that somewhere on the order of 10 percent of weggies are ANCA-negative. (In fact, not all WG cases have vasculitis as its major characteriization.) The most important thing to know is that it is some sort of auto-immune disease that has your characteristics.

Al

[makabe]

I have had a positive c-ANCA. Right now, it's negative and the ENT (who sees a number of Wegs patients) says that my sinuses don't look "active" right now, but that the biopsy may well show the microscopic granulomas. I have had many other symptoms for months, most noticeably a daily fever (for 19 months now!), roving joint pain, extremely painful eyes... All of that said, the docs aren't sure if I'm truly active right now, but all agree on Wegs. They want the biopsy to determine if I should take MTX or something else along with the pred/Bactrim/Folic acid, or if I may have gotten lucky enough that pred and watchful waiting is enough.

And to answer Al's question, yes, the rationale was that if he has to be in the sinuses anyway, they should be repaired. He really sounded like I had no other option because of the complete blockage. He said collapse would be the result if NOT done. I'm not normally in such a habit of questioning everything a doctor I trust tells me, but the road to diagnosis has been so long that I just find myself doubting a lot.