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amers
06-09-2009, 10:03 AM
Hey Everyone-

I was wondering if anyone out there has had nasal reconstruction done? If so, where did you have it done and how was the result?

Thanks!

Sangye
06-09-2009, 10:13 AM
I don't have a saddle nose (so no idea where to refer you, etc...), but I was wondering how it started. Would you be willing to describe how it developed?

Doug
06-09-2009, 10:23 AM
The front cover of the book THERE MUST BE A REASON, by Myrna Swart (this book was mentioned the other day- it's about a young girl who has WG, as written about by her mother), the girl who has WG is portrayed in three views: before WG, with the saddle nose, and after reconstructive surgery. In the first view, she has (I must be polite!) an ample nose; in the second, classic saddle nose; in the third, a petite, turned up nose. Attached is an article (American Medical Association) about reconstructive surgery on people with saddle nose. You have to scroll up because it opens on the second page. It's a bit technical, but it covers a lot of territory you want to know about.

http://archotol.ama-assn.org/cgi/reprint/130/3/334.pdf

andrew
06-09-2009, 07:33 PM
I think it's a result of the severe sinus/nasal infections that we weggies get. Some can get so bad they destroy the sinus/nasal cavities. Happy to be corrected.

amers
06-09-2009, 10:23 PM
Doug,

That article was great, thanks a lot! I had been looking for something like that with before and after pictures but wasn`t able to find anything. I have been interested in getting my nose corrected for awhile now, just have been putting it off. My nose looks just like the women`s nose in the picture and that gives me a great boost of confidence that my nose can look the way it used to, too! :)

amers
06-09-2009, 10:27 PM
It`s hard for me to pin point exaclty when my nose started to "fall". I have had WG for 9 years and this happened about 2 years ago. It happened very quickly, it seemed like one month I had my normal nose and the next, I had a saddle nose. My nose isn`t as bad as I make it seem though, most people say they can`t even tell. But since I`m still young, 25, it does bother me a lot and I`m getting married next year, so that`s the main reason why I`m getting it taken care of.

I hope you never have to know what a saddle nose is, but the good news is, it can be corrected!

Sangye
06-10-2009, 12:23 AM
I hope yours gets corrected easily-- it'd be hard at any age, but 25 sheesh....

Did you have other signs of things changing with your nose first? I ask all this because I haven't had any sinus/nose involvement, but have noticed the skin over the cartilage part of my nose is increasingly an odd, red color. Sort of spotty. And the cartilage on one side is sore when I wiggle my nose or rub it. The docs say it looks okay inside and last week's MRI was negative.

Doug
06-10-2009, 11:13 AM
It`s hard for me to pin point exaclty when my nose started to "fall". I have had WG for 9 years and this happened about 2 years ago. It happened very quickly, it seemed like one month I had my normal nose and the next, I had a saddle nose. My nose isn`t as bad as I make it seem though, most people say they can`t even tell. But since I`m still young, 25, it does bother me a lot and I`m getting married next year, so that`s the main reason why I`m getting it taken care of.

I hope you never have to know what a saddle nose is, but the good news is, it can be corrected!

Congratulations on the marriage plans! Also, I'm glad the article served your purpose. The face is so much of our identities, I think we all can appreciate your concern. Another thing for you to be concerned about, and all your doctors keenly turned into, is pregnancies and the effects of WG drugs on your unborn child. Google each drug you are prescribed and read as many of the listings as you can, paying particular attention to ones by the drug companies and such sources as the Mayo and Cleveland Clinics, Johns Hopkins, and major teaching hospitals.:)

jola57
06-11-2009, 01:26 PM
Not to be a spoilsport but because of WG, cartlilage may be absorbed by the body and its back to squzare one. Make sure the Plastic Surgeon is familiar with Wegener's.

sumsum5587
07-05-2009, 01:41 PM
congrats on the wedding!! how long have you had WG?

JanW
01-27-2010, 04:21 AM
I was going through these old posts and as for my saddle nose, I really think it developed in less than two weeks. First it was a bump on the nose, and almost a total collaspe. Having lived with a nose I thought was really cute for the first 44 years of my life, it was difficult to take (especially since I wasn't sure it was a saddle nose, and didn't have a WG diagnosis when it happened). The ENT says that it's nothing to do with the inside of my nose (I thought for sure he would find a hole in the septum -- that's how I thought these things developed), rather he said that it was tissue death on the outside, common to WG patients (but overall even for weggies, it's pretty rare). Interestingly, this doesn't mean that you are having a flare, and it also doesn't mean in can't get worse (same with subglottic stenosis). Fixing it would involve cartilage from my rib and I don't know if I want to go through that -- I think it would be most noticeable in photography -- no one has noticed it but my husband -- not even my 12 year old daughter, who would certainly let me know if something was wrong with my looks.

Brooke
01-27-2010, 07:29 AM
I develped saddle nose and my ent used cartilage from behind my ear to fix it. so far so good with the outcome

Sangye
01-27-2010, 09:13 AM
Jan, thanks for that info. Was it a Wegs ENT who told you the tissue death wasn't indicative of Wegs activity? Same question for SS.

I'm having outer tissue changes but not much happening inside. This all began and has progressed during a flare.

elephant
01-27-2010, 09:15 AM
After I showed my sister pictures of people with saddle nose and how fast it can happen, I think she stared at my nose for two whole days. Even came up close to examine it and told me to keep a close eye on it. :)

JanW
01-27-2010, 10:00 AM
Sangye, no the specialist didn't tell me that -- it was something that I read in research papers on the web, but the sample was small and there certainly could be some disagreement about that. The rheumo was sort of surprised that the nose collasped with no pain or discharge but my ENT didn't seem surprised at all (and he's the guy who fixed 200 of them). The subglottic was totally uninflamed though upon examination though, and the ENT suspects it hasn't been inflammed in years. The reason for the fix though is the extent of the damage, as well as the fact that even scar tissue can move around, eventually lead to a total blockage of the airway. Interestingly, with just the slightest touch on the cartilage at the bottom of the nose the ENT could tell it was unaffected -- I never felt anything different in the portion that collasped, and I suspect that even if you see a collaspe coming, you might not be able to stop it.

Sangye
01-27-2010, 12:17 PM
I found this (http://www.vasculitisfoundation.org/node/1065) article on the VF website about SS.

These are 2 portions of it that I found very useful:

"Dr. Lorenz finds that as long as the WG is not active, the SS stays quiescent . Once the patient has an exacerbation, the SS can flare and then the body’s natural ability to create a stenosis from the scar occurs and the physician and patient struggle to get the airway widely patent while preventing further scarring."

"An important point to understand about subglottal stenosis is that it acts independently of generalized WG disease and systemic therapies. If somebody flares, it doesn’t mean the larynx will get worse. If the larynx is getting worse, it does not mean you are in a WG flare. Lastly, it means that systemic immunosuppression usually does not help reduce the severity of the subglottal stenosis."

It sounds like once it's formed, the SS can do its own thing regardless of Wegs activity. It worsens due to increased scarring, not Wegs inflammation. Am I interpreting this correctly?

elephant
01-27-2010, 01:18 PM
That makes sense, but wow. So scarring is the issue. Thanks Sangye, that's why I love this site. :)

katwoman
01-27-2010, 05:26 PM
I can't pinpoint exact time of saddle nose, just noticed gradual changes and kept looking at it in the mirror, one day when my mum came to visit and said she was looking at old photo's at home where i am caught side on and she said 'I couldn't help but notice how much your nose has changed.'

And it seems to continue to change with more damage. Even recently, I caught up with a friend I hadn't seen for 12 months and she couldn't get over the change to my nose - it seems to have fallen in one side so causes a dark looking shadow as it dips in (hard to explain). I've had a few ask me what happened to my nose (how embarrassing is that for a woman), so I tell them its all part and parcel of being a former professional boxer.. ;-) lol!

elephant
01-27-2010, 09:36 PM
Katwoman, that's great a former professional boxer. Hee, Hee...

JanW
01-28-2010, 12:46 AM
Sangye - that's my understanding of SS exactly. I also think that they don't fix it (at least Lorenz doesn't) until you're down by 50 percent (and I'm down more). Greater than that and you run the risk of literally waking up one day not being able to breathe (and a trach). Apparently, my ENT says, that once I feel what it feels like open, I will "never let it get this bad again" meaning that I would go to him to actually have it dilated more if I feel it closing up. There's absolutely no evidenence of inflammation or disease activity in my throat now, so nothing to biospy, and there was nothing big enough in the nose either, although it is slightly inflammed. It will be interesting to see what the rheumo says is the treatment plan today.

Sangye
01-28-2010, 02:17 AM
Kat-- hilarious answer!

Jan-- Yes, I like Dr Lorenz's approach in the article: Don't fix it if it's not causing a problem. Good luck with your rheumy today!

JanW
01-28-2010, 02:42 AM
Me too -- it's what I was hoping for when I first got the CT scan that said that I had this condition six months ago. No such luck for me though -- the ENT definitely stressed that even if this was completely idiopathic (this was before I had my WG diagnosis last week) it would still have to be fixed. It isn't an emergent situation, but it is urgent -- the opening is simply too small and I don't really have any wiggle room for it to get smaller. That why it will be done independent of medical treatment for WG -- in other words I don't have to wait for "remission." Of course, once someone points it out to you, you realize how much you have been compensating for your lack of air (I in particular have trouble giving speeches, which is something I have to do sometimes in my volunteer work), so while I'm not looking forward to the unknowns of the surgery, I do like the fact that in addition to the discomfort, you are able to feel full breaths as soon as you awaken from the anesthesia.

elephant
01-28-2010, 03:00 AM
Full breaths are good JanW, I'm with you on that one.

Sangye
01-28-2010, 03:13 AM
LOL-- go ahead, get it fixed. That just takes all the excitement out of life! :D

Brooke
01-28-2010, 04:43 AM
What is the difference between subglottic stenosis and tracheal stenosis?

Sangye
01-28-2010, 06:15 AM
Same thing--

Brooke
01-28-2010, 07:44 AM
thanks sangye

JanW
01-28-2010, 08:40 AM
As it was explained to me by the ENT, the subglottis is the lower part of the larynx, right above the vocal chords and the trachea immediately below. Interestingly, subglottic stenosis is more common to WG, tracheal stenosis more common to sarc, and it's one of the markers that ENTs use to figure out which disease one might have (since sarc also causes saddle nose). The ENT thought I was more likely to have sarc because I'm black, but the stenosis was totally in the wrong place. My CT scan of my chest showed no tracheal stenosis, which my pulmo used as proof that I didn't have WG. She was wrong. The chest CT starts below the subglottis, and mine is webbed with tons of scar tissue.

Sangye
01-28-2010, 09:14 AM
Tracheal stenosis and Subglottal stenosis are two different things? Oops-- sorry for making that mistake, everyone!

JanW
01-28-2010, 09:23 AM
Just a slightly different part of the same anatomy, Sangye -- and as you could imagine, that makes a world of difference if you are going to operate on it (frankly I think that my pulmo basically thought it was the same too -- scary!)

snooz23
01-29-2010, 02:31 PM
Quick question for you JanW. When you have ss, is it also difficult to swallow? I have been experiencing tightening in my throat for a while and now today I literally have to swallow 2 or 3 times for each bite of food I take...it like gets stuck in the upper portion of my throat? It is also happening w/ my vits. I take. Is this common w/ ss? What type of doctor do you see to have something in this area checked out? Thanks for your input.

Oh, also I wanted to mention (I think you were discussing your doses in another thread) I began on mtx in sept. 09. I did have to take pred. w/ it and am still tapering off but from my understanding the mtx. doses come in 2.5mg pills. Therefore I think your doctors may have been talking about the number of pills you would be taking.....starting you on 4 then up to 6 and 8 as the final. 25mg is the maximum my docs will go w/ mtx. but they started me at 4 pills a week which is 10mg of mtx. then we moved to 15mg (6 pills), 20mg (8 pills) and now I am holding steady at 25mg (10 pills) of mtx./week. I am just not sure if the drug is dispense in 4, 6, 8 mg?

Jack
01-29-2010, 04:31 PM
I have a pharangeal pouch which makes swallowing difficult. They seem to be associated with Wegener's, but I can't find anything spelling out a clear connection. This tends to be true for quite a lot of the less common symptoms.

elephant
01-29-2010, 10:33 PM
I have this on/off. Nexium seems to help it. I use to pound my chest to get liquid down, it would get stuck sometimes. It is a weird feeling. I have a feeling it is the Wegeners because I had this before taking all these other drugs.

JanW
01-30-2010, 12:53 AM
Snooz - that is one of the first questions that my rheumo asked. No, I don't have any problems swallowing at all, but it is certainly possible with SS. My main symptom is breathlessness. You see an ENT for SS -- if it is severe enough it has to be fixed whether you are having active inflammation or not (a few different procedures can accomplish this). My SS has apparently been with me for years (in 2005 I was diagnosed with asthma which I don't even have) and it's all scar tissue that's over the voicebox, but the problem is that the scar tissue could break off or shift and I could having to get a trach. That's why it wasn't an emergency, but rather an urgent sitaution, and I'm going in for a repair probably within the next month or so. My ENT says it's likely that I will have to have it done more than once.

JanW
01-30-2010, 12:54 AM
Yes, and on the mtx, I do have to call the doc. He wants my max dose at 10, and I know it comes in 2.5 mg pills, so I do need to know how many pills he wants me to start with.

snooz23
01-30-2010, 12:13 PM
Jack--What exactly is a pharangeal pouch and how would I know if I had that? Would that be an ENT dx? And is there anything you have ever been able to do about it?

Jack
01-30-2010, 07:15 PM
A pharyngeal pouch is described quite well here (http://www.nice.org.uk/IPG22).

Mine was diagnosed by Barium swallow X-Ray tests, but was first noticed when they tried to put an endoscope down my throat and found that they could not do it. It results in difficulty in swallowing and sometimes food (and pills!) getting caught up and coming back when I cough.
My ENT specialist is reluctant to operate due to my general poor health and also the rate of complications associated with the op. He says that there is a risk that I could be worse off afterwards.

No one has mentioned a link with Wegener's - it might just be associated with muscle weakness and coughing.

Sangye
01-31-2010, 01:54 AM
Most herniations are due to adrenal weakness. It makes the ligaments and many types of soft tissue overly stretchy. (eg. frequent ankle sprains are common) Even if you didn't have Wegs, there's little to be done once a hernia like that has formed other than a surgical repair. It must be a real pain to live with, though.

JanW
01-31-2010, 02:08 AM
Sangye - is the adrenal weakness due to treatment for WG, or the actual disease itself?

Sangye
01-31-2010, 02:30 AM
Most people in Western culture have weakened adrenals even if they're not "sick." The combination of unrelenting stress and inadequate adrenal nutrition puts excessive and chronic demands on the adrenals. Over time their function deteriorates. (Stress doesn't just refer to emotions. It's any stressor-- environmental toxins, lack of sleep, artificial preservatives/colorings, processed foods, vaccines, drugs, overexercising, alcohol, etc....) Inadequate adrenal nutrition means we're not eating the foods our ancestors ate that rebuild adrenals.

Some signs/ symptoms/ conditions that have underlying adrenal weakness as the cause: dark circles under the eyes, allergies, frequent ankle sprains, hernias, frequent and sometimes lingering colds/ infections, feeling weakened after a cold, increased need for sugar and/or caffeine, wake up tired, sleepy during the day, and many more.

Even if one didn't began with adrenal depletion, a chronic illness and harsh drugs would quickly cause it. Of any drug, pred has the worst effect on the adrenals, both short- and long-term.

deb
01-31-2010, 04:09 AM
"Inadequate adrenal nutrition means we're not eating the foods our ancestors ate that rebuild adrenals. "

Hi Sangye,
What can we do to improve or protect our adrenals while we are dealing with treatments? I was hoping to start a new thread and ask for ways folks try to stay as healthy as possible while working through our treatments but I must have too old a browser. Since the new site was open I have not found any way to start a new thread just read and reply to ones already here.
Thanks,
Deb

deb
01-31-2010, 04:31 AM
"Inadequate adrenal nutrition means we're not eating the foods our ancestors ate that rebuild adrenals. "

Hi Sangye,
What can we do to improve or protect our adrenals while we are dealing with treatments? I was hoping to start a new thread and ask for ways folks try to stay as healthy as possible while working through our treatments but I must have too old a browser. Since the new site was open I have not found any way to start a new thread just read and reply to ones already here.
Thanks,
Deb

Jack
01-31-2010, 04:38 AM
If you go back to the Forum Section sub-menu here (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/), you will find the "Post New Thread" button near the top on the left.