Saddle Nose Deformity Surgery

[JanW]

Can anyone describe what the recovery is like, how long before you can breathe out of your nose again, how long your face is bandaged, pain, etc.? Is the nose packed? I don't have any experience with surgery of any kind.

I'm exploring saddle nose surgery now -- my doc does it with rib cartilage. My nose is still fully functional, but I'm concerned about further collaspe. Although my doc thinks that's somewhat unlikely, it was pretty freaky to have the bridge of my nose colaspe, so if I could put cartilage in there that would mean that couldn't happen again, I'd be pretty relieved!

[Brooke]

Hi Jan~

I had my surgery for saddle nose about 10 months ago. The surgery went very well. My ent borrowed cartilage from behind my ear. I wore a plastic splint on my nose for one week before it was removed. I did not have hardly any pain, my nose was not packed for this surgery.
The only thing my ent said not to do right away was to have my glasses sitting on my nose (would leave a little indent).

[Luce]

I don't much about this because luckily I don't suffer from saddle nose, but I thought doctors were reluctant to fix this because there is a good change the WG could attack the new cartilage and you'd be back to square one?

[Jack]

I'm with you Luce in not knowing much about it, but I would think that once the Wegener's is under some degree of control, the new nose would be reasonably safe?

[JanW]

I think they do fix them now, and fairly frequently. Lots of people have functional deficits such as not being able to breathe out the nose, and there is actually a risk the structure could continue to collaspe whether it is the tissue you were born with there, or the tissue that is being grafted on from some other part of your body. My doc said that he could do mine now, and I'm not in remission. I had read on the internet also that doctors were reluctant to fix SS if you weren't in remission, but that turns out to be far from the case. And SS surgeries are ones where there is almost a 100 percent certainty that they would be performed more than once---they are counting on at some point in your life the granulomas coming back, and you've got to have an open airway regardless.

I'm not even going to get any medical treatment until after my surgery, so I do not have a situation where I am experiencing life threatening Wegs at this time. Point is that they will do it regardless of 'remission' status, as long as you are up to the surgery. Also, my saddle isn't that bad (but obvious to me), but I've seen some (not in real life) that are horribly, horribly deforming. I don't know that I've ever seen one in real life other than my own.

[Brooke]

I am not sure either about fixing it during a flare. I had mine fixed before I was "diagnosed" with Wegener's. My doctor at Mayo said they could do surgery on my SS in the future but didn't want to do it now while my Wegener's is active.

[JanW]

My SS is severe enough (I'm at a 3 when I should be at an 8) that it is being treated as an urgent (though not emergent) situation. This is one reason the rheumo didn't want to do anything medically at this time that could jeopardize my surgery date of March 4. Also, my scar tissue shows no active inflammation, so there's that -- they suspect it's been closed like this for a while and what they do know is that I don't really have any room for it to close further.

I'm sure that they would want to wait on any surgery until disease was in remission -- if possible, and if that happens.

Brooke -- what did you doc think caused your nose to collaspe if you weren't yet diagnosed?

[Brooke]

Jan -
My ENT had always thought in the back of his mind that I had Wegener's, however all my blood work and biopsies came back negative. So after I noticed my nose collapsing after my first sinus surgery, my ENT didn't say a whole lot. He just said he never had a patient have that happen and that he could fix it for me. After I was diagnosed, I asked him if it could be the Wegener's that caused that and he said yes. It was just strange because it happend right after surgery, so I really don't know if I would have developed saddle nose or not if I didn't have any surgery.

[JanW]

Wow. What did he chalk the stenosis up to? I guess in the presence of negative blood work AND negative biopsies it's hard to make a definitive diagnosis, even with classic clinical presentations.

[Brooke]

I don't think I had developed SS yet? If so, I guess I don't remember him saying anything about it. My symptoms that bothered me the most in the very begining (that is about 8 years ago), were: chronic cough and my voice being gone all the time. It seems more recent that the SS has gotten a little worse.
Now that I am writing all of this, I rember I went to a speech therapist back in like 2004. I remember having to read a paragraph to her and I would have to take deep breaths to get the words out. I wonder if that would be a symptom of SS?
I am wondering if I could have been diagnosed earlier than just last September.
Too late now I guess!

[JanW]

OMG, Brooke -- it's like we are living parallel lives! I too went to a speech therapist (this was probably 2006) and she taught me how to breath through my nose while speaking a certain way and doing a bunch of vocal exercises. This helped for a while -- my primary complaint was breathlessness while talking, but because I was going to a pulmologist and allergist once I had the diagnosis of asthma, everyone put this breathlessness down to me not trying to cough while speaking. Over time, these exercises really didn't help very much anymore.

It wasn't until the ENT actually looked all the way down my throat to the trachea with the scope that he could see with his own eyes that the opening was less than 50 percent of what it should have been. Even the CT report said it was "hard to quantify." That's when we went into "must.fix.now" mode. I think the deal is that you can live with it for a long time, but if mine got even a little bit smaller, I'd probably have to be trached for sure.

[Brooke]

Yes! I too was always breathless trying to speak! The speech therapist I saw told me to rest my voice and also taught me breathing exercises (did not work!)
I was also diagnosed with Asthma in 2008, they still think I have asthma though but I'm not so sure about that.
I don't think my SS is too severe, as of Sept 2009 my pulmonologist said that 80% of my airway is open. So I don't know if that has changed or not. I will find out next month when I go to Mayo and have another Bronchoscopy.
We will have to keep in touch on here :)

[JanW]

My ex-pulmo is clinging to her asthma dx as well -- even went so far as to say that the mtx (which I can not take due to liver issues) would help my asthma. Rheumo and ENT are quite clear that I don't have asthma, and frankly, I barely even touched my albuterol in three years, yet kept adding regular meds because of my breathlessness. And all along it was a mechanical issue.

80 percent doesn't sound so bad. I bet they won't even want to fix it, just watch it. Fixing it comes with it's own issues, and you do usually have to do it more than once anyway. Just as an FYI, in my ENT's practice, the pulmo (or thoracic surgeon really) operates with him if it's below the second tracheal ring (I just missed that cutoff), and he operates alone if it's true subglottic (around vocal chords only). He says they find that its a better surgery if they operate within their own anatomical area of expertise...my sense is that there are subtle but significant differences. The other thing is that a pulmo should be able to determine whether it's asthma by looking at your flow volume loop which can accurately plot whether the obstruction is in the lungs or higher up in the respiratory system.

[elephant]

Personally, I think it is the Wegener's. I also have two inhalers, I barely use them. Over the years Wegener's has quietly attacked my lungs, sinuses and ears.

[JanW]

I know. The only thing that the steroids did was permanently weaken my bones (and theoretically stop the Wegs from a rapid advance -- who knows). I was certainly taking a lot of medication for a disease that I didn't have.

Do you use a peak flow meter -- I always remember saying to my pulmo that I didn't understand why I couldn't go above 175 -- when a person of my age and size should be at 400. She just always said that we couldn't tell for sure what my peak flow would have been before I was diagnosed.

The signs were there, but honestly, I would have almost have had to be a doctor to figure them out!

[Brooke]

My dad has a peak flow meter and I can get to 350. Is that in a normal range? I am 28 years old.

[Sangye]

What's a peak flow meter? Is it the same as the incentive spirometers they give you in the hospital?

[JanW]

Not quite (I think those have the balls you have to keep up in the air, right -- or at least I remember that from years ago when a friend of my mother's was in the hospital). You just blow as hard as you can for as long as you can into a tube and there are numbers written on it. As an asthmatic, theoretically you are supposed to track this every day because changes in peak flow occur before you ever start feeling poorly (and you would start a stronger regimen of meds then). So, I'm 5'3", 120 lbs, I should have been around 400 (hell, my 12 year old daughter who ways 85 lbs was almost there), and the most I ever made it up to was 240. I stopped doing it around 180, because frankly it was scaring me. I think I was already starting to internalize that the imaging that said I had SS was right, and I didn't want to deal with the thought of having the surgery -- and having WG.

[Sangye]

I kept my incentive spirometer for awhile but finally threw it out because it was never improving (after about 2 yrs). It was freaking me out, too-- constantly seeing the number that told me "Your breathing sucks."

[Terri]

Are you feeling better Sangye?
I'm sending you "snow angels". I don't want to see any more snow!! If I wanted this I would live in Alaska. uggg...

[Sangye]

I'm over the stomach bug thing but otherwise not doing so great. Took big fall on ice 2 nights ago. Crazy sore. I saw my chiropractor today. Just waiting to hear back from my Wegs doc about if we can do the ritux sooner.

I love the snow. This was a bit much, though.

[JanW]

Brooke -- I think those numbers are pretty good -- I believe averages are based on height and weight because this corresponds to size of lungs. What was interesting to note was that my lungs are of normal volume but my readings were so poor -- another signal that the problem wasn't in the lungs.

[Jack]

Sangye - sorry to hear that you have had a fall on top of all your other problems, they just keep coming thick and fast don't they?
We have just had another fall of snow here and my wife won't let me out of the house this morning. :(

[elephant]

Good Jack. She is really a good wife.

[Sangye]

Yeah, you only want a fall of snow, not a fall of Jack. :)

[jola57]

Jack, you are to stay put. No fixing up or carrying, or starining -- you know the drill -- until that rib heals

[Jack]

Sorry, but I've got to push on or I'll just sink into my chair and die! ;)

I'm working very slowly at completing the bathroom project and it should be finished by Thursday. Today's job - clean and paint picture rail (in a bathroom? ) and window sill.

[elephant]

I can relate Jack. I know exactly what your saying....so carry on and get it done. Then sit and relax a little. :)

[Sangye]

I can relate, too. When you can't do that much to begin with, it's so stressful have even more limitations because of injury or illness. I feel like if I do less than I am, I'll just disappear.