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.

[Dirty Don]

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.

I believe you have to be that way now...normal or not...it's about YOU, not the doc or anyone else, on here or anywhere else...YOU have to keep the docs aware that they need to keep on top, stay inquisitive, and be persistent...way it is now...best of luck to you, it will be fine...

D

[Nancy-S]

Doubt, Makabe, doubt away. You just can't be any other way. It'll make the right decision that much more clear.

Hope you get to feel better soon.

[Sangye]

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.
A daily fever, roving joint pain and severe eye pain is most certainly active disease, regardless of what the ANCA is doing. The ANCA is just not accurate as an indicator of disease activity for most people. Its best use is for initial diagnosis.

You are right to question everything they're telling you. Not only are they giving you some strange info, but you have a right to be thoroughly informed about your diagnostic and treatment options. Never let any doctor do any test or procedure unless they've answered all your questions and thoroughly explained your options. It's best if they can present the research and statistics to support their opinion as well.

[Al]

A daily fever, roving joint pain and severe eye pain is most certainly active disease, regardless of what the ANCA is doing. The ANCA is just not accurate as an indicator of disease activity for most people. Its best use is for initial diagnosis.

You are right to question everything they're telling you. Not only are they giving you some strange info, but you have a right to be thoroughly informed about your diagnostic and treatment options. Never let any doctor do any test or procedure unless they've answered all your questions and thoroughly explained your options. It's best if they can present the research and statistics to support their opinion as well.

Sangye is right. Many doctors assume that you are not capable of understanding the research, so do not mention it directly. But is is important to know this for a couple of reasons: it keeps the doctor honest, and it is good for your own education. A good patient, in my estimation--and--I think, would be even if I had become a doctor--is an informed one.

Al

[Dirty Don]

Sangye is absolutely right. My first encounter with the docs who were going to treat me was very forthright..."I just almost died. I got nothing to lose. I want aggressive, assertive, proactive help, and to be constantly informed and explained to at each encounter and phone call. So far, they have been there for me...but I got a long ways to go evidently!!

[drz]

Sangye is right. Many doctors assume that you are not capable of understanding the research, so do not mention it directly. But is is important to know this for a couple of reasons: it keeps the doctor honest, and it is good for your own education. A good patient, in my estimation--and--I think, would be even if I had become a doctor--is an informed one.

Al

Only a few doctors have any training or experience in doing any original research or even understanding the basics of how to do valid research. That is why they often rely on drug reps to sell them latest drugs. Those in a university setting or med school or other place doing lots of research will have expertise in doing and understanding research. Many of these researchers also have an academic degree plus their MD degree.

So often you will know as much or even more about the research than your treating doctor.

[Trudy]

I have had many other symptoms for months, most noticeably a daily fever (for 19 months now!), roving joint pain, extremely painful eyes....

makabe, may I ask when you say daily fever was it just a portion of the day and how high did it get?

And by all means keep questioning....you are your best advocate. As you have probably noticed while reading on the Forum, Wegs makes no sense, follows no rules, and is still an enigma to even the Wegs doctors.

[Sangye]

Every doctor I've seen at JHU has offered the research behind their suggested tests and treatments without me even asking. It's wonderful--makes the decisions much easier to have all options thoroughly explained like that. I would ask anyway, but I greatly appreciate that they offer it without having to ask.

[makabe]

My fever follows a pretty predictable pattern. When I'm not on prednisone, it builds throughout the day (I run pretty low "normally," and start out around 97 degrees for the day...) I usually have a temp of around 99.5 to 100 by 4 p.m. Occasionally it goes as high as 100.4 or so. When I first had this pattern in 2007, it got up to 101.5 every day. This time, while it's lasted longer, the fever stays a bit lower. I don't feel sick like I do if I get a fever with a virus, but it seems to make me extremely exhausted.

I am glad to hear JHU helps make decisions easier! They are supposedly reviewing my case right now.

[Dirty Don]

I am glad to hear JHU helps make decisions easier! They are supposedly reviewing my case right now.

Don't know much about JHU except for what Sangye has said, but they seem well prepared and great place to be for this...so, don't let up on them, keep calling them, pushing them to get to the point for your treatment! Best of luck!

[Al]

Every doctor I've seen at JHU has offered the research behind their suggested tests and treatments without me even asking. It's wonderful--makes the decisions much easier to have all options thoroughly explained like that. I would ask anyway, but I greatly appreciate that they offer it without having to ask.

In my experience, doctors at a university clinic are always ready to discuss research, but in other clinics, not so much--largely because they are "a little behind" in their reading, and so are afraid that you might be more up to date than they are. But this can be a positive as well. Drac teaches at the University as well as having his private practice, and readily admits to not having the time to read everything. The problem is, as I have discussed elsewhere, is that there is so much specialist material that there really is not enough time in the day to check up on research in potentially related areas. For patients, this is less of a limitation. For one thing, what else can you do while having a bad day? Looking over papers is easier than working at those times. Also, the specialty lines mean nothing to us; whatever we learn is new and potentially appropriate. Drac seems to have come to actually enjoy the material I point out to him as having relevance. (I've learned enough of the jargon and style that he now trusts me--mostly.) In any case, I have come to believe that keeping your doctor on his or her toes is a very service to medical care. Hmmm....maybe they should be paying us for the coaching!

Al

[Trudy]

My fever follows a pretty predictable pattern. When I'm not on prednisone, it builds throughout the day (I run pretty low "normally," and start out around 97 degrees for the day...) I usually have a temp of around 99.5 to 100 by 4 p.m. Occasionally it goes as high as 100.4 or so. When I first had this pattern in 2007, it got up to 101.5 every day.

Karen, this is exactly like my pattern! Even run a low normal temp. However, for me this still is happening on 20 mg pred and Imuran.

[Al]

Karen, this is exactly like my pattern! Even run a low normal temp. However, for me this still is happening on 20 mg pred and Imuran.

I'm interested in the variations on normal temps. I run low myself: 97.0 F is standard for me; 98.1 would be a mild fever. Anyone else?

Al

[Sangye]

Karen, I'm glad to hear you're heading to JHU. It takes them a bit to review your records. They go over everything with a fine-toothed comb and will know your history as well as you!

I don't have the daily fever cycle, but ever since beginning treatment my temp runs 97.0. I feel feverish and unwell if it approaches 98.6.

[Sangye]

Al, I think you're right on about the research. In a private practice it's very hard to keep up with all the research. In the bigger institutions the doctors are not only doing the research but they're communicating with others who do, as well.

[elephant]

That is wonderful that your going to JHU. Karen, those are the same symptoms I had too, but no one could pin point what was going on...it is frusturating but JHU will get to the bottom of this.

[Al]

JHU is a major center, for both research and clinical services. You will be in good hands, Karen.

Al

[me2]

Lots of good replies here. Thirty some years ago an ENT guy diagnosed me with WG by doing a sinus biopsy.
Just a few years ago I requested of my doc an ANCA test. He is a very sharp guy. He said he thought it would show nothing.
I said I thought it would have to since I had obviously suffered so much from the disease. He was right. The test said I was just fine. It was a great blow to my ego to have him be right .

As to sinuses. I have had trouble for many , many years. I agree with all the info and ideas put forth so far. Recently I saw a sinus guy. Highly regarded. He said it was good that I had been able to avoid surgery this long. He said he would not do surgery unless I had so much damage that I was getting infections on a non stop basis because of the structural damage.

Interestingly enough, I used to suffer horrible infections. I have taken so much antibiotics it boggles the mind. I think at this point some of the damage has actually opened up some areas. Knock on wood , I have been free of infections for many years.
I know how debilitating and miserable they are. My heart goes out to you and I hope that with surgery or not you find relief soon.

I have the best sinus care system going right now that I have ever had. Twice a day - more or less, I use Neil-Med sinus rinse.
It comes with packets that have salt and baking soda in just the right quantity. I put one packet in the bottle plus some Alkalol liquid ,which is a 'soothing nasal wash, mucous solvent and cleaner'. I can testify that the Alkalol is great stuff. It is also a mild antiseptic. It feels great.
Oh yeah, the NielMed bottle. It is very simple squeeze bottle that you put in your sinus and squeeze. Works great. I have used a water pik, snuffed from an open saucer and a neti pot. The NeilMed bottle is my favorite. This ends the commercial portion of my post.

[Al]

Lots of good replies here. Thirty some years ago an ENT guy diagnosed me with WG by doing a sinus biopsy.
Just a few years ago I requested of my doc an ANCA test. He is a very sharp guy. He said he thought it would show nothing.
I said I thought it would have to since I had obviously suffered so much from the disease. He was right. The test said I was just fine. It was a great blow to my ego to have him be right .....

Just one note, Kirk. There are some WG sufferers--maybe 10 percent--who are ANCA negative, or not very positive, but have all the classical symptoms. For the rest, ANCA are directly associated with, and likely causal to, the disease. Cause and effect is harder to prove than mere association, though in all cases ANCA activity has a high correlation with the disease process. All variations are hideous, of course....

Al

[makabe]

I had an ANCA test again yesterday and should know Tuesday what the results say. I do have almost nonstop sinus infections right now. Yesterday was two solid months on the latest round of antibiotics with only sporadic and very temporary improvement. (Side note: I've been waiting TWO WEEKS for a sinus culture to come back so I can get a different/maybe better antibiotic...grrr.) The infection has, as always, moved down into my chest. With asthma, I start with a miserable sinus infection and only get worse because my breathing is so impacted. I'd like to believe surgery will help stop that process!

I agree that the NeilMed sinus rinse is a HUGE help. I am pretty sure that, and Advair, is what keeps me going most days!

[Sangye]

Why is the sinus culture taking so long? It's usually just a few days. Have you called to check on it?

[makabe]

I've called several times and even asked the lab directly. They say only the doctor can give me the results, which seems wrong but no one will budge on it. The doctor is now on a medical mission and I have a feeling his stuff is taking way longer to get to since another doctor probably has to add my docs calls/questions to his/her pile. Since I used a big lab, I'm calling my regular doctor on Monday to have them pull the results and figure out the drugs.

[Al]

I've called several times and even asked the lab directly. They say only the doctor can give me the results, which seems wrong but no one will budge on it. The doctor is now on a medical mission and I have a feeling his stuff is taking way longer to get to since another doctor probably has to add my docs calls/questions to his/her pile. Since I used a big lab, I'm calling my regular doctor on Monday to have them pull the results and figure out the drugs.

Hold it a second Karen. Let me get this straight: You (or you through the insurance company) are paying for the culture, yet everyone is just sitting on the results? My goodness, what is this world coming to? And it isn't even yet the ides of January. ("You blocks, you stones, you worse than senseless things!")

Al

[annekat]

I'm interested in the variations on normal temps. I run low myself: 97.0 F is standard for me; 98.1 would be a mild fever. Anyone else?

Al That's interesting, I also have my temp usually around 97.0, sometimes a little more, but rarely up to 98 or above. I started taking my temp during the lung involvement last winter, before I knew I had WG. I've had a fever maybe 3 or 4 times during that period and since.

Anne

[Al]

That's interesting, I also have my temp usually around 97.0, sometimes a little more, but rarely up to 98 or above. I started taking my temp during the lung involvement last winter, before I knew I had WG. I've had a fever maybe 3 or 4 times during that period and since.
How high were your fever temps, Anne?

Al

[Palmyra]

Hi there makeabe,

I can tell you that in my daughter's experience, septal collapse was not a result of watchful waiting. She has had 6+ successful debridements in the last 18 months, with many warnings from Mayo specialists to local plastic surgeons NOT to mess with a deviated septum in active or non-acitve Weg.

The medications used to subdue active Weg cause many Rhino viruses and much worse (fungal and bacterial infections), but I would highly recommend many opinions before allowing surgery to correct a deviated septum (which most of us have..its an easy procedure for those that are not at risk) the nasal septum has lousy blood supply to begin with....the risk of septal collapse is too great and too difficult to repair for those with Weg and a compromised blood and immune system.

Best Wishes,
Mom Jane

[annekat]

How high were your fever temps, Anne?

Al When I was sure I had a fever was when it got up to around 100. That was only 2 or 3 times, back during the lung involvement when I thought I had pneumonia, which turned out to be WG. But there've also been a couple of times it's gotten up around the "normal" of 98.6, when like you, I considered that I might have a bit of a fever, since it's usually in the 97 range.

Anne

[Al]

When I was sure I had a fever was when it got up to around 100. That was only 2 or 3 times, back during the lung involvement when I thought I had pneumonia, which turned out to be WG. But there've also been a couple of times it's gotten up around the "normal" of 98.6, when like you, I considered that I might have a bit of a fever, since it's usually in the 97 range.

I find this interesting, Anne. Not necessarily important, but interesting. I wonder how many of us run low, body-temp-wise?

Al

[vdub]

You (or you through the insurance company) are paying for the culture, yet everyone is just sitting on the results? My goodness, what is this world coming to? And it isn't even yet the ides of January. ("You blocks, you stones, you worse than senseless things!")
This is more typical than not. My experience from having blood tests every month for the past 19 months at random places all over the western US, is that most will not release the results directly to you as a matter of policy (not law). I carry a "letter for release" from one of my doctors and that usually does the trick.

But, back on subject. I was active wegs, but didn't know it, and had sinus surgery to open the air passages to my sinuses. It was the best surgery I have had! Whenever I notice myself breathing through my nose, I am thankful I had the surgery. But, that is just my experience -- everyone is different.