A year ago today

[freakyschizogirl]

Hello and a happy Rare Disease day to all :biggrin1:

Just wanted to share that it was a year ago today I had my nose operation to correct my collapsed nose and septal button.

One year on all is going good, nose is good and I couldn't be happier with the result.

I know a few of you are looking at possible ops in the future. If anyone has any questions please feel free to ask and I will help in any way I can :thumbsup:

[Alysia]

Hi Sam,
thanks for sharing. I am so glad for you. your nose looks beautiful :thumbsup:

I will want to do a similar surgery in the future. I still don't know when.
I have lots of questions... if and when you will have time and energy, I will be glad to know more:
were you in remmision ? how did they do the reconstraction/ what did they "install" inside ? how long was the recovery ? how much pain did you suffered ? was it dangerous ? how much time untill you looked OK ? do you have important advices ? tips ?
thank you any way. and lots of hugs :hug3:

[KimH]

I am so glad that all is going well for you. I will have the same question. Dr Lebovics mentioned possibly 18 months, now 17 . Oh yes I am counting! So many questions to come.

[drz]

I am so glad that all is going well for you. I will have the same question. Dr Lebovics mentioned possibly 18 months, now 17 . Oh yes I am counting! So many questions to come.

Since he is regarded as the expert in this area, his advice and insights would be most helpful and valuable to others looking at such a procedure to repair Weg damage to the nose.

[annekat]

Sam, I'm happy to hear you are still happy with your new nose after a year. Good to hear from you!

[freakyschizogirl]

Alysia, thank you!

In answer to your questions I was in remission but still on Rituximab.
The reconstruction was done with cartilage taken from my ears as it was thought to be less invasive than rib cartilage and would be the right shape and heal better.
I also had a button put in as I have a hole in my septum - the jury is still out on whether this was a wise thing to do. Dr Jayne says no, surgeon and ENT's say yes!
Immediate recovery was about 2 weeks as I was back to work and had the cast taken off by then. Longer term recovery? Over a year according to my surgeon as cartilage takes long time to heal.
The pain...well of course its going to be painful but I was on codeine which made me sleep a fair bit and did help with majority of the pain. I was in more pain from my ears as one of the surgeons assistants had sown my ear too tight and I was in so much pain I had to ask for morphine. It wasn't discovered until I had my stitches out but I had asked them to look before I was discharged. I think they thought I was being a fussy patient.
It was dangerous in respect of being put under a general anaesthetic and the risk of flaring. I didn't flare, but I think this was pure luck and the fact my surgeon took the cartilage from my ear and not ribs.
I looked ok when the cast came off but i'm not afraid to say it was rather overwhelming and I couldn't look at myself in the mirror for several days without crying - happy and sad tears.

The top tip I would share is if you have cartilage taken from your ears like I did - don't lay on your side for as long as possible!! I laid on my back for the first few weeks but as the pain reduced I started laying back on my side - this has meant the cartilage that was left in my right ear is now not strong and doesn't support my ear as well as it used to. It doesn't look any different and you couldn't tell except if you push it in it feels squidgy.
Also I wasn't prepared for the scars that would be left on my ears. Of course I knew I would be having cartilage taken form there but I didn't really think about the scarring in the long term. Its settled down now but you can still see, well, I can still see!
I would also say prepare yourself as much as you can emotionally and psychologically as I pushed a lot of my feelings and thoughts aside and just concentrated on the operation itself and not about how I would feel afterwards.
Part of me couldn't believe has good it looked and glad I looked normal again for my wedding photos. The other part of me felt like i'd cheated and was hiding my disease. I'm still not completely over my mixed emotions and I dunno if I ever will be.

Lastly as a carer I am very sensitive and alert if anyone is in my personal space or near my nose. I don't think I could go through the op again emotionally or physically!!! But knowing what I know now i'm glad I did. Ultimately I got what I wanted and remain happy with the results.

I still look at my nose daily in the mirror, just checking in on it!!

(pics are on my profile page)

[KimH]

Thank you for sharing your story. I hope your happiness continues on and on!

[vdub]

Off topic, but as I read Sam's post and saw her sig, I was reminded that Jack hasn't been with us for 2 and half years now. I had many private messages with Jack and he was quite a guy. He is definitely missed. Sorry for the hijack.... Back on topic....

[Debbie C]

Sam,good to hear from you and glad to hear everything to going so well for you.:thumbsup:

[Alysia]

Thank you, Sam, from the bottom of my heart, for this precious sharing :thumbup:
your story is so touching, I can feel the excitement, the tears of sadness and joy, the amazement of overcoming tough moments, of finding internal powers.
it is also a bit scary for me. I don't know if I have enough strength to go through this. it is not going to happen soon, so I have enough time to consider it.
your nose looks beautiful :hug1:

[Alysia]

Off topic, but as I read Sam's post and saw her sig, I was reminded that Jack hasn't been with us for 2 and half years now. I had many private messages with Jack and he was quite a guy. He is definitely missed. Sorry for the hijack.... Back on topic....

Hi vdub,
I am sorry :crying: it is too painful... :hug1:
maybe we should write a special thread, kind of "in commemoration" of those who passed away ?

[freakyschizogirl]

Off topic, but as I read Sam's post and saw her sig, I was reminded that Jack hasn't been with us for 2 and half years now. I had many private messages with Jack and he was quite a guy. He is definitely missed. Sorry for the hijack.... Back on topic....

Hey vdub, I still feel Jacks loss. It was the first Weggie death but also to lose such a wise old owl hit the forum and me very hard. If it wasn't for him I wouldn't be at Addenbrooks and ultimately in remission.
I know he's smiling down on all of us.

[freakyschizogirl]

Thank you, Sam, from the bottom of my heart, for this precious sharing :thumbup:
your story is so touching, I can feel the excitement, the tears of sadness and joy, the amazement of overcoming tough moments, of finding internal powers.
it is also a bit scary for me. I don't know if I have enough strength to go through this. it is not going to happen soon, so I have enough time to consider it.
your nose looks beautiful :hug1:

Alysia you are stronger than you realise and its amazing how adaptable we human beings can be. What spurred me on was my wedding and wanting my nose not to be my focus when I looked at my wedding pics.

Think about why you want your nose fixed. I honestly thought no man would come near me with all my health problems and being facially disfigured but then Stu came along and was there from the start - he came to my first infusion just 2 months into our relationship and he's been to every hospital visit since. You cant wish for more support than what he's given me.

Also if like me your eyes are drawn to your nose and it affects your confidence then I say do it for you. But don't rush. Fully research different options and talk it through with both your ENT and vasculitis docs.

Also I know this might not be forever, there is every chance my nose will collapse again so it isn't a certain long time fix.

[drz]

Hi vdub,
I am sorry :crying: it is too painful... :hug1:
maybe we should write a special thread, kind of "in commemoration" of those who passed away ?

I remember a couple of them. I might have even started one of them. Some times their (Jack and Al and Lightwarrior) old posts pop up and reminds us of their many helpful comments posted here.