Saddle Nose - Surgery in Australia

[katwoman]

Hi everyone,
Long time since I've written, been busy with life and WG - after 12 months on Methotrexate and Bactrim my Rheumy has decided its not controlling my limited WG....I could have told him that since my sinus are driving me insane - anywhoo he has now changed my medication back to Imuran and Bactrim and waiting to see if that will show any improvement, time will tell I guess.

So regarding saddle nose, after years of harping I finally got a referral to a surgeon at Prince of Wales, I saw him with eagerness and hope only to be told 'nope no chance until WG has run its course (run its course...when what?) and there is only one window of opportunity, its not just the nose its the whole sinus area that needs reconstruction (I realise this as it really serves no purpose at this point in time excepting filling a space on my face, I cannot taste or breathe through sinus)....'and I know this is aweful but you really need to think about down the track that in the end you may not be looking at reconstruction surgery but a prosthetic nose' - OMG!!

Needless to say I left his surgery in tears and now feel more then just upset but frustrated and disappointed and hate myself more and more when I look in the mirror (even though I have supportive friends and family) - but twice i have had the same teller at the bank and twice he has asked me what i done to myself....oh I thought you might have had an accident with your nose - damn teller I'll give him an accident with his nose that will involve my fist.

So basically I am my wits end and want to find a resolution ... any suggestions out there - I am even thinking of some way writing and sending pics to a surgeon in the states (desperate enough I'd get a loan out to get this done).

Anyone can offer some help - I'd love to hear from you

Katwoman

[elephant]

Katwoman, I think JanW doc is Dr Levobics ( in New York) and he does reconstructive surgery on saddle noses with a plastic surgeon ( JanW correct me if I am wrong). I think you have to be in remission for at least six months before he will do it.
I am all for getting reconstructive surgery! I know exactly what you mean.

[Jack]

From the previous posts made on the subject it is not an operation to be undertaken lightly if you have Wegener's and the surgeon used should be familiar with all the possible complications that run of the mill docs will not have encountered.

[Sangye]

Katwoman, I don't have anything to add but just wanted to say that I'm sorry you're suffering like this, and I hope you can find the help you need. :hug2:

[JanW]

Elephant is right, Katwoman, my doctor does do this. However, you have to be in remission for six months and it needs to be a completely drug free remission (he operated on a woman who was on 2 mg of pred daily, but indicates that this is strongly not his preference). The reason for this is simple. If your WG isn't under control, the cartilage in your nose can collapse again -- the reason it collapsed in the first place is that the small blood vessel inflammation that we all have means that blood supply wasn't sufficient in that area and it simply died (sounds gruesome, but there it is). I have never had people ask me about my nose, but it can be seen clearly in pictures and people have certainly stared at it. I would like to get it fixed before my daughter's 8th grade graduation in 2012, but I'm not due to start reducing my mtx until spring, and then it's an open question as to whether it I will be able to maintain remission without drugs.

I have seen people who have gotten the surgery done with fillers or other artificial materials, but my doctor would never recommend this, and as a weggie, I can absolutely see the risk to putting artificial materials in your body. As to reconstructive surgery around the sinuses, Jack is right, this is nothing to mess around with and needs to be done by a ENT who is experienced in WG...people come to the US from other countries to see my surgeon all the time as he is known as one of the best in the field. He does work with a plastic surgeon in his office for the aesthetics, which he will willingly admit is not his main concern.

He presented a talk on this at the Symposium and after surgery the nose can look quite good again -- not the same but almost -- but I don't have any of your other problems with sinuses, so I don't know about things on that side.

[katwoman]

Thank you everyone for your comments, I know its not something to be taken likely but the pain I have even to touch my nose and then the blood and crusting is getting to me! I always sound like I am out of breathe because I cannot breathe through my nose and so breathing and talking is through the mouth, don't get me started on my snoring - it even wakes me up lol!!

I guess I am just at my wits end and would like some relief from this and not to mention the comments, JanW I get the stares but its the comments that hurt, especially when people ask you and it comes across rude to me.

It so nice to see you are all on here still and I hope you continue your battles - as mentioned I haven't written on here for quiet some time but pop on every now and again and check to see how everybody is going.

Kat

[Jack]

Sorry if you have mentioned it before, I can't remember, do you use nasal irrigation to wash out the blood and crusting? It is much more gentle than the alternatives and gives a chance for some healing to take place. Having said that, my immediate reaction to this problem is that it indicates Wegener's activity and my own immense problems all went away with control of the disease.

[JanW]

Agreeing with Jack that severe pain, crusting and bleeding are signs that the WG is still active. If well controlled, a lot of that should go away. In any case, you should avoid surgery on the sinuses during that active period if at all possible. I had to have surgery on my windpipe when my disease was still active, but that was lifesaving surgery so there was no choice anyway.

[katwoman]

Oh yes Jack, I use the saline nasal wash a number of times a day, along with nasal irrigation douche and as steamer and plus lubricates etc - unfortunately nothing seems to hold back the bloody crusting! I have been on 5mg Prednislone and just changed from Methotrexate to Imuran, so hoping that will ease off the nasal condition seeing doctor again in January and fingers and toes are crossed in the meantime for some relief :-)

[Jack]

It is difficult not to read directly across from our own experience and indulge in a bit of diagnosis by internet, seldom a wise thing to do! However, I've got to say that when my nose and sinuses were in a similar condition to your description I was put onto ctx and high doses of pred. There is of course a lot more to establishing the level of Wegener's activity than the state of your nose, but for me it has always been a good indicator.

[elephant]

Katwoman are you more tired? Any other body pains/aches? When my sinuses are out of sorts, I know immediately that I need to get on top of this and figure if its a mini flare? infection? virus? If it goes on long enough I have called my WG specialist to figure this out.

[katwoman]

I had my flare 12 months ago with joint pain, tiredness and sinus problems, since methotrexate/pred & bactrim all the other symptoms subsided except the sinus areas and currently I am once again experiencing a sinus infection which then my doctor ups the Bactrim which brings it under control - my rheumy has only recently changed me to Imuran as he know thinks the Methotrexate is doing enough to hold it a bay :-(

[elephant]

Katwoman, I am in the same postition as you right now. The Rheumy upped my Bactrim to DS daily, but I had to stop taking it daily secondary to difficulty swallowing. I thought my Rhuemy would up my cellcept, but she is keeping it the same for now.
Hope the imuran works for you!

[Sangye]

Difficulty swallowing, Elephant? What's that about?

[elephant]

That was from the Bactrim, now I am on a lower dose of Bactrim every other day....I am taking Nexium every three days. The difficulty swallowing is better, I mentioned it to three of my doctors this week....they really didn't seem that concerned....my guess is that I play doc on my self and if things get out of control they know I will be knocking on their door pretty darn loud!

[Sangye]

LOL That's what I do, too. My docs are good about it.