Wednesday, April 7, 2010

Wegener's: My Journey (Part I)

Before you start reading this blog article, I want to remind you that part of my aim in writing this series is to raise awareness about Vasculitis and Wegener's Granulomatosis.  Please help to spread the word and you can be entered into a drawing to receive a Hope necklace I have made.  Please click here for more details.  Thanks!

I research everything and I worry about everything, too, which isn’t always a good combination.  So whenever I find something that doesn’t seem right, I worry about it and I research it.  That’s what led me to do some pretty strange searches one day.  I started out with “hole in nose” on Web MD.  And that led me to this happy paragraph:

The nasal septum is the structure between the nostrils that separates the nasal passages. The septum, composed of cartilage and thin bone, can develop a hole (perforation) in the cartilage as a complication of previous nasal surgery, from cocaine use, excessive nose picking, trauma, cancer, or diseases such as tuberculosis, sarcoidosis, or syphilis. As damage reduces blood supply in the septum, the cartilage begins to die, and a hole develops.

Nice.  Very encouraging.   

I suppose I should back up a bit and explain just why I was doing such a search in the first place.  Last winter I had a spate of colds that turned into sinus infections and bronchitis.  I had also had had bloody noses for several years.  Due, I thought, to all the blowing and wiping as well as dryness, not only the outsides but also the insides of my nostrils were sore.  I had decided to try some saline gel I found that was supposed to be for just such a thing.  I’d been using it for a while and it really did help.  One day when applying it, though, something didn’t feel right.  It felt like a hole, which I thought was strange.  I had never noticed one before.  But I don’t make a habit of sticking my finger up my nose so I wasn’t sure.  Using my lighted makeup mirror and a bit of contortion, I confirmed that was exactly what it was.  A hole in my septum – going right through.  Ewww.

So that’s what led me to read the encouraging paragraph above.  Okay, so now I knew there was such a thing and it had a name:  perforated septum.  Gotcha.   A few more searches yielded similar results.  Perforated septums are not terribly common and there are only a few things that can cause them.  Great, I thought.  Which one of these things caused mine?  Let’s see:  Nasal surgery?  Nope.  Cocaine use?  Yeah, all the time (I know you can’t hear the sarcasm, but it’s there).  Nose picking?  Nope.  Trauma?  What kind of trauma?  No one has recently punched me in the nose.  I had read in another place that nose piercings can cause a perforated septum (Duh!  Isn’t the whole point of piercing your nose putting a hole in your septum?  Well, I suppose if you want a nose ring like an ox.)  Nope, no piercings.

So that left me with four other very cheery words:  cancer, tuberculosis, sarcoidosis or syphilis.  I hadn’t heard of sarcoidosis, but it didn’t sound very good, especially being linked with the other three.  Since I didn’t know what it was, that seemed a good place to start, especially since the odds of me having the others were pretty slim (I hoped) – and in the case of syphilis, zilch.  I  clicked on the sarcoidosis link on Web MD.  More encouragement there.  It was described as a rare disease that caused tissue damage, and sometimes heart and lung failure.  But not everything fit.  I didn’t have a rash on my face as was described.

Over a week or so I worried and brooded and researched some more.  At some point, after searching many different combinations of words and symptoms, I finally found a small blurb about Wegener’s Granulomatosis.  Of course I had never heard of it, but at least I had or had had in the past more of the symptoms than those that were listed for Sarcoidosis. 

I decided I had better make an appointment with my doctor.  I think the receptionist thought I was nuts when I told her why I wanted to be seen.  That was only the first of many people to say, “You have a what in your nose?”  Or misunderstand and think I said deviated septum.

I really like the physician’s assistant I see at my doctor’s office.  She listens.  She doesn’t act like I’m nuts or making things up.  And she did listen.  Then she looked in my nose with the thingy they used to look in your ears and stuff and confirmed I had a hole in my septum.  She couldn’t remember having seen it before and went through my records.  She wanted to know if anyone had ever mentioned it before during examinations.  No, I think I would have remembered something like that.  I had seen her a lot over that winter and the winter prior with several prolonged sinus infections and bronchitis that refused to go away.  I'm sure she had looked in my nose and she would have reported something like that. 

She asked me the standard questions:  Had I ever snorted cocaine?  Had I had any recent trauma?  Nose piercings?  Nope.  Nope.  Nope.  We talked about my history of bloody noses over the last several years and she told me there were a couple of things that could cause a perforated septum (about which I had already read), but they were very rare and she doubted they could have caused it.  It was time to see an ear, nose and throat specialist to see what he made of it.  

The ENT didn’t think it was Wegener’s either, but one good thing was that I had also seen him for sinus infections the prior winter.  He had done CT scans of my sinuses then and he looked back to confirm that in those there was no perforated septum.  So it had happened over the last year.  He went up in my nose with a scope and looked all around.   He ordered some blood tests and said that depending on what the blood tests said I might have to have a biopsy of the area to get a diagnosis.  He checked my throat at the same time because Wegener’s can also cause narrowing of the trachea, but he didn’t see any narrowing with his scope.  So I did my blood tests and went on my way.  He did give directions for saline rinses once or twice a day.

In the meantime, I was still sick with bronchitis that wouldn’t go away.  Or something in my chest anyway.  I was told I had asthma or allergies.  The conjunctivitis I was getting must also be allergies.  It was almost springtime – that must be it.  I was given inhalers, which helped a little.  I was on so many antibiotics over those two years that I couldn’t keep track.   The previous year I had a long bout of bronchitis and I had just gotten off antibiotics for a sinus infection that literally lasted over three months.  I had no energy and I slept as much as I could, but I was coughing so much that wasn’t easy either.

While I waited for the results of the blood tests, I kept researching, but now I focused almost completely on Wegener’s Granulomatosis, because the ENT had confirmed that it was probably the most likely cause, even if he didn’t think it was plausible to have caused it.  I found the Vasculitis Foundation, which I have said before has a wealth of information, and several patient-written Wegener’s guides and a patient online discussion group. 

It was starting to make sense to me.  Nearly every symptom that was listed and the progression of the disease seemed to fit.  Bloody noses?  Check.  Nasal crusting?  Check.  Chronic sinus infections?  Check.  Of course the perforated septum.  Chest and breathing problems.    The more I read, the more things made sense to me and the more scared I got.  All the blood tests were negative for an antibody that is often found in the blood of Wegener’s patients.  The next step was a biopsy of the affected nasal tissue.  Not a pleasant procedure by any means, but I have been through much worse.  I went back in a week and the doctor told me that the biopsy was negative.  I had already read that it’s not unusual for false negatives in Wegener’s biopsies because many labs are not familiar with the test and what they are supposed to be looking for.  

Things just kept getting worse.  I was sick all the time.  I had chest pain and tightness and couldn’t breathe, which landed me in the hospital emergency room.  I began having conjunctivitis like symptoms and ear infections.  I started keeping notes, especially because the ENT didn’t seem like he really believed me.  Once we got the negative biopsy, he was ready to say he didn’t know what caused it but wanted to go ahead and fix it.  Reconstructive surgery on my nose.  I wasn’t sure I wanted to do that without somehow talking to a specialist.  Someone who really knew Wegener’s. 

Looking back on my notes now kind of scares me.  I’ve forgotten in the last year all the things that bothered me.  I began having pretty severe pain in my hip but also what my Rhematologist later called “roving arthritis” which would move from day to day.  One day I would wake up and my knee would hurt really bad.  Then my elbow the next.  My wrist and hand the next.  It got so that my hands and wrists hurt all the time.  It was hard to work on my jewelry or even type.  I thought he would think I was crazy, but it’s apparently a classic Wegener’s sign.

I talked to my PA again.  She had also done some research and we both really thought it would be a good idea to get an appointment with a specialist before I went ahead with surgery on my nose.   And so the search began for a specialist…

Next time:   the results of my research.

Note:  I wanted to put a graphic in here that related to Wegener's, but they were all either copyright protected or not very pleasant to look at.


  1. Wow!! What a story so far! So sorry that you've gone through all of this.

  2. What a year you've had! I'm loving reading about it, and that you're spreading the word. I'm going to go twitter, facebook, and blog about it now! :D

  3. Nice post Lisa.. sorry about your plight!
    Keep up the hard work on being your OWN Advocate
    though. I really believe you have to do that..I don't think Dr's "know it all".. hopefully you find relief without going into surgery!!

  4. Thanks everyone. Things are now better than they sound in this post, I just didn't want to make it too long, plus I wanted to give an idea as to what kinds of symptoms go along with Wegener's. I have since found a wonderful and very capable specialist in Boston. More on that in my next post.

  5. My wife has been battling Wegener's for more than 6 years now (just finally obtained a diagnosis this year - although the collective symptoms have only added up to that, and we have suspected it for the past 5 years - the medical profession in most cases just doesn't seem to be able to get this). We live in Lewiston; you can contact my email:
    Maybe it would be possible to arrange a meeting where she could talk with you... There has been no one who can relate, and this illness is so rare that it has been difficult to find an actual person to contact!
    (p.s. She likes cats too)


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