Clicking noise when breathing

[Essex-jill]

I was diagnosed with WG over 16 years ago and have Saddle Nose Deformity.

My partner is quite concerned that when I'm asleep my breathing sounds like a regular loud clicking sound down a hollow tube and at times the ' death 'rattle ' !!!! his been so concerned at times he has sat up a lot of the night listening to my breathing.

Does anyone else with WG and Saddle Nose Deformity experience this ?

Has anybody undergone a repair operation of their Saddle Nose please ?

All replies are welcome.

Thank you.

Jill

[SusanCh]

Hi Jill I have had WG for 11 years and had saddle nose deformity along with other things! Whilst I haven't made those particular noises according to my husband, I am told that I can make strange noises when breathing at night which we have put down to damaged tissue at the back of the nose.

Although I live in the North West I managed to get referred to Mr Guri Sandhu, ENT Specialist at Charing Cross Hospital, London as I had a tracheostomy. His excellent experience with WG meant that I had a reconstruction there. He also recommended I see Mr Hesham Saleh ENT at Charing Cross about saddle nose reconstruction as I was struggling to breathe through my nose. I had surgery in 2012 and a further op in 2013.

If you want any further info,message me direct.

Best wishes Sue

[John_Mills Volunteer]

Hi Jill, not sure about the "death rattle", but there is a maxillo-facial chap on the south coast who is very keen to establish his reputation in using both conventional and advanced techniques for nose reconstruction. He is writing an article about it for the Vuk website. If you would like his contact details, let me know.

BW - John

[e-mail]

[Essex-jill in reply to John_Mills]

Thanks for your reply John.

I saw the ENT doctor at Addenbrookes last week and unfortunately my Vascuilits Is ' active ' again high up in my nose and he hopes my infusion of Rituximab in October will help. I know I cannot have reconstruction until I'm in remission for a while. But I would like the details of the of facial maxilla chap please.

Thanks again John.

[John_Mills Volunteer]

Can you send me your email address and I will send you the name of the max-fax specialist and Avril's story. She had a prosthesis made at Addies as a temporary measure & liked it so much that she decided not to go ahead with the reconstruction!

Bw - John

[Essex-jill in reply to John_Mills]

Thanks John I have privately emailed you.

Jill