Saddle Nose Surgery

[Ashley]

Hello Everyone
I don't post on here a lot but recently had saddle nose surgery and wanted to share my experience with everyone. I know I was very curious about it prior to having surgery!
I am now two weeks post op and am doing very well. It was relatively painless, a little swelling and minimal brusing. I am very happy with the results! My surgeon used rib cartiledge to rebuild my nose. My surgeon was amazing. He is the expert in my area and has preformed this surgery on many Wegeners patients and is very familiar with our disease. I had to wait until I was in remission (which I am thanks to rituxan) and on as little predisone as possible (I am currently on 5mg). I am slowly losing the prednisone weight and having my nose fixed has really helped me feel more like myself!
If anyone has any questions about the saddle nose surgery - ask away - Im happy to answer any questions!

[pberggren1]

Thank you so much for telling your story Ashley.

I think I messaged you before about a year or so ago about seeing Dr. Carette?

[Ashley]

Hi Phil,

Yes, I see Dr.Carette. He is my rheumatologist and is absolutely amazing!
I had a very difficult time getting into remission but rituxan seems to have done the trick! The difficult part moving forward is getting coverage to maintain my remission. I was unable to get the government to pay for my initial treatment but received it through a compassionate care program through the drug manufacturer of rituxan. I had already done cytoxan for 16 rounds and would relapse within weeks of stopping it so I needed to have rituxan. The rituxan has been very effective for me and I feel amazing!
How have you been feeling lately? Have you been able to find a rhematologist where you are? Youre in Saskatchewan right?

[Sangye]

Congratulations, Ashley. I hope you continue to feel better! :thumbsup:

[Al]

Wonderful to hear this positive story, Ashley--thanks for sharing it!

Al

[Widthofacircle]

Very happy for you Ahley. Always great to hear a good news story
Brendan

[pberggren1]

Yes Ashley, I'm in Saskatchewan. I have found a very good Wegs doc right in my town. I did rtx this year as well.

[RudiK]

Congratulations, Ashley, I'm so glad that you made it into remission and that the operations was a success.
Rudi K

[mama2005]

congrats on the surgery. did they use bone to do the surgery or just cartlidge?

[Tasha]

Hello Ashley,

I am new on this forum. I am from Slovenia (Europe) and diagnosted with WG four months ago. I have a saddle nose too. Because this is very rare disease (and Slovenia is a small country - only 2.000.000 citizens) I do not find any patient who had this surgery here. Please let me know how are you today? Do you have one or more surgeries? Is your nose ok now? How long were in remission before had surgery? Can you give me some names of the doctors who make this kind of surgeries? I am prepare to go abroad to do this.
Thank you for information and best regards!

[Yvonnea]

Hi Tasha,
I don't know if you are on facebook. But there is a very good closed support group named "Wegener's Granulomatosis" on there ( https://www.facebook.com/groups/2254691112/?ref=group_cover). There has been a lot of discussion about saddle noses and surgery on this page. And all the posts are recent. Might be worth checking out.
Take care,
Yvonne

[Tasha]

Hi Yvonnea,

Thank you very much for helping me. Yes, I am on Facebook. How to get into closed group?

Tasha.

[Tasha]

I am already in. Thank you!!

All the best!!!

[meganjean26]

Glad it went well. I had my surgery 11 years ago sounds like the same rib cartilage. I was very pleased with the result. I have relapsed 2 times since then and I think it is falling back in. How long is it suppose to last? I'm sure the relapse didn't help.


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[Tasha]

Hi Megan,

What do you mean - surgery before 11 years and than two times relapsed? Please explain because my English is not very good. Thank you !!!