Update on my hooter

[freakyschizogirl]

Hi all

I saw the surgeon yesterday at ENT Addenbrookes. He went through my options for surgery, and it sounded like a lot of work, he would lengthen the dorsum and this and that...it sounded very painful.

He asked me how much having this saddling had, i said alot, it affects me greatly every day.

He had a bit of a fiddle and looked at the perforation. He said maybe the best option for me would be fillers instead of surgery, as the saddling doesnt affect my breathing and its really just the appearance that bothers me.

He said he wouldnt do anything til there was now doubt i was in remission as he didnt want to cause a flare. At the moment my PR3 titer is 2.3 CRP8 and ESR 26. He's going to write to the head honcho Dr Jayne in the Vasculitis clinic so maybe i'll actually meet him myself the next time i go!

He said if i did go for the fillers they could put in some semi permanently which would absorb and go after 3 months or so and if i liked the way it looked he would do some that were more permanent.

[delorisdoe]

Id update you on my hooters but that is kinda personal

[NicShaf]

Id update you on my hooters but that is kinda personal

LOL...and hopefully Wegs isn't effecting your hooters, that doesn't sound normal

[NicShaf]

Hi all

I saw the surgeon yesterday at ENT Addenbrookes. He went through my options for surgery, and it sounded like a lot of work, he would lengthen the dorsum and this and that...it sounded very painful.

He asked me how much having this saddling had, i said alot, it affects me greatly every day.

He had a bit of a fiddle and looked at the perforation. He said maybe the best option for me would be fillers instead of surgery, as the saddling doesnt affect my breathing and its really just the appearance that bothers me.

He said he wouldnt do anything til there was now doubt i was in remission as he didnt want to cause a flare. At the moment my PR3 titer is 2.3 CRP8 and ESR 26. He's going to write to the head honcho Dr Jayne in the Vasculitis clinic so maybe i'll actually meet him myself the next time i go!

He said if i did go for the fillers they could put in some semi permanently which would absorb and go after 3 months or so and if i liked the way it looked he would do some that were more permanent.

Good to hear that you're in a steady remission! What are fillers? no matter what they are, they sound better than surgery Best of luck!

[pberggren1]

These fillers that you talk about. I have never heard of them before. Tell us more. Does it involve any kind of cutting or surgery at all? If it is only your appearance that is bothering you then I would not want any surgery at all. It sounds like this ENT is fairly good. I hope you get to see Dave.

[freakyschizogirl]

I think its kinda like botox or other cosmetic proceedures...cos they inject it. I'm not mad on being injected either but sure as hell beats surgery, and he didnt sound very confident that surgery would correct the damage completely and i'd always have a bit of an odd looking nose.

Gotta see the Vasculitis team and hopefully Dr Jayne himself...who knows?

[vdub]

Id update you on my hooters but that is kinda personal

Ah yes! This is an international forum and words can mean something totally different. hehehe....

Are they going to inject silicon or something to bring the saddle up to "level"? That would be a pretty cool and, presumably, painless way of getting back to normal. I'd do that in a heart beat. Not sure I'd go through nose surgery again, tho. I've been through 3 now (maybe 4) and they are not pleasant under any circumstances. But injecting something sounds like the ticket.... Let's us know about your decision and how it turns out....

[JanW]

I would be VERY cautious about fillers. You know my doc is pretty much the world-renowned guy who fixes saddles (and yes, I do have one also), and the whole idea of putting anything that is artificial into your body if you have WG is strictly a no-go as far as he's concerned (if you can avoid it, obviously, there are medical cases, like knee replacements, pacemakers, etc., where it is medically necessary). Beyond the fact that it can collapse again (although permanency is never guaranteed with a saddle correction because if you flare again, you know that your nose is already a week spot, and it can just saddle again), you are putting something artificial into a place where you have already had tissue death, and an area of the body you know for a fact the disease has affected. That having been said, I have seen someone who had it done, it looked beautiful and hadn't collapsed in five years (she hadn't flared in that time). She said that she had mentioned it to Dr. Lebovics (we were all the Symposium) and he did say, "that wasn't the way I would have gone." I suspect that there are more people who get it done with fillers out there, because a lot of people let plastic surgeons (not even ENTs!) do this to them. I met people who have said that this was one of the main things that their rheumys wanted them to see about fixing (I'd say my rheumy is the same actually), because it's such a concretely 'fixable' problem, when so much of WG isn't.

As to the surgery, not sure how bad your saddle is, but everyone is correct, it is not minor surgery. The way that my surgeon (and others) do it is taking bone and cartilage from other parts of your body (e.g. rib, skull, elbows, ears), cutting a hole in the tip of your nose and wedging and molding the new cartilage in there. Couple of days in the hospital, because it's two operations, but the wound at the harvest site (which he is tending to now do in women under the breast -- assuming the breast has an under, heh -- because the scar won't be visible), is worst. The nose doesn't really hurt at all, and there's no black eyes, bruising, or any of that.

I am going to consultation on this in the fall (as I reduce my mtx, my doc wants me almost off), so will let you know what else he says.

One other thing, and I hesitate to mention this, Phil, but freaky might not so I will. I know that you have said before that if it was 'just appearance' you wouldn't have the surgery. I know it is never your intention to be insensitive, but a 'saddle nose,' rightfully called a 'deformity' is more than an 'appearance' issue. Your nose sits in the center of your face, and day in and day out, I can see people staring at me when they notice that something is dreadfully wrong with the center of my face. My doc, at the symposium, showed closeups of people he had repaired and you could see the audience, largely WG patients WITHOUT saddle noses, gasp at the pictures (completely automatic reaction). The stories he told (people being denied jobs, people unable to date or married, a schoolteacher whose young students called her 'the monster' behind her back), were truly heartwrenching. He would be the first person to tell you that this surgery is life changing for its recipients, and to suggest that we not have it done because it is 'just appearance' makes it sound like a vanity thing, which it isn't. It would be like saying that you shouldn't get implants because people live very full lives when deaf.

[freakyschizogirl]

One other thing, and I hesitate to mention this, Phil, but freaky might not so I will. I know that you have said before that if it was 'just appearance' you wouldn't have the surgery. I know it is never your intention to be insensitive, but a 'saddle nose,' rightfully called a 'deformity' is more than an 'appearance' issue. Your nose sits in the center of your face, and day in and day out, I can see people staring at me when they notice that something is dreadfully wrong with the center of my face. My doc, at the symposium, showed closeups of people he had repaired and you could see the audience, largely WG patients WITHOUT saddle noses, gasp at the pictures (completely automatic reaction). The stories he told (people being denied jobs, people unable to date or married, a schoolteacher whose young students called her 'the monster' behind her back), were truly heartwrenching. He would be the first person to tell you that this surgery is life changing for its recipients, and to suggest that we not have it done because it is 'just appearance' makes it sound like a vanity thing, which it isn't. It would be like saying that you shouldn't get implants because people live very full lives when deaf.

One word: wow! And i know exactly what you mean about people starring.

I thank you so much for your advice JanW - i wont take either option lightly. Think i will ask my Vasculitis docs for their opinion and some other weggies.

Feels like i am finally reaching the light again, y'know? I dont even look at my nose in the mirror anymore cos it just depresses me. I HATE any photos of me, unless they are from a very flattering angle.
Surgery scares the hell outta me, more than a filler would, but i'm very conscious of not doing the easier thing when the harder thing might be more beneficial.

Decisions decisions.

[Geoff]

Sam I'm just so pleased for you at how you've turned your life around this year since your DX and early non-treatment to now having such decisions to make.

You know my thoughts on Addenbrookes, but if it helps I would share your uncertainties with either Dr Mcfeirin? or Dr Jayne.