Sinus surgery

[PCDmama]

My 3 year old son's doctor is recommending sinus surgery to open up the drainage passages for more efficient draining. Have any of you with PCD had this done? Was it helpful to reduce sinus infections and sinus pressure? How painful is the recovery? I appreciate any input or advice!

[TerryBun Administrator]

Not something I've ever had done to me, not sure if it's common practice here in the UK. Are you in the States, as it seems to be much more a thing amongst my PCD friends out there?

[PCDmama in reply to TerryBun]

Thanks for your response. Yes, we are in the US. Crazy that management would be that different though... Obviously don't want to cause him more harm than good.

[PCDmama]

Thank you so much for sharing your experience. How old were you when you had the surgery?

[fcfilice in reply to PCDmama]

I was 19 years old when I had the sinus surgery but I had tubes placed in my ears many many times in my childhood years.

[Iram_sa]

Hi

I had sinus surgery when I was in my early teens and I don't remember it taking long to recover but this was twenty years ago so I'm sure the procedure will be far more efficient now. I know my t tubes surgery three years ago was much more pain free and easier then when I had them done twenty years prior!

About 8 years ago I suffered very severe head pain and then after seeing the scab they noticed a huge blockage causing the pain. Before surgery the consultant suggested I try flixonase nasule drops first to see if that helped (as with PCD they need to be very careful with anaesthetic) and honestly it was a God send! It really does help with sinus infections that I have on rare occasions. Plus sterimar nasal wash.

If surgery is the only option then it will only benefit I am sure and as he is young he will recover quickly.

Good luck with whatever you go decide.,

Iram

[PCDmama in reply to Iram_sa]

Thank you for your response & sharing your experience! It is much appreciated!

[shelleymash in reply to Iram_sa]

Hi,

In what way did the flixonase help?

Regards,

Shell.

[Iram_sa in reply to shelleymash]

Hi Shell,

It's a steroid drop which reduces the inflammation in the sinuses which is why the pain occurs and it then loosens the mucus so easy draining. It really does help me. I rarely have sinus infections as it's mainly my chest but when I do it is quite bad and this now works for me.

Hope that helps answer your question.

Take care

Iram

[Karlo]

Hi! I had sinus surgery to open the drainage passages for more efficient draining when I was around 14 years old, about 18 years ago. My doctor created an opening for my maxillary cavities and I dare say "saved" me from chronic sinus infections that would always spread to my lungs. Post-op was difficult and there was alot of bleeding in my case, but it was well worth it for me. I could finally blow my nose (rinse it) and get rid of the abundant mucus that would sit in the cavities and would otherwise get inflamed. The operation was a turning point in my life medical-wise, and really helped me relieve my symptoms. It's been almost 20 years and I'm still thankful for him operating me. I hope it works the same for your son as it did for me, if you go through with it.

[PCDmama in reply to Karlo]

Thank you so much for your reply! I'm so glad to hear this helped you & am reassured by your positive experience.

[Grace9614]

Hi there, I had sinus surgery 5 years ago as they wanted to widen the passages and remove polyps. It was a quick procedure I just stayed in over night. Quite uncomfortable for a few days while packs are in the nose but other than that it greatly reduced my infections and the effects are still lasting 5 years on

[PCDmama in reply to Grace9614]

Good to hear- thanks for sharing!

[vharrison]

I live in the US and my 13 year old just under went a 5 hour sinus surgery. We are only a week out so I'm not sure if its going to work. I will tell you the first night was rough but each day got better . We have not been formally diagnosed with PCD yet but my son has several symptoms of it and the Pulmonologist here says based on what she sees, it looks like PCD. We are waiting on the genetic testing to come back. I'm thankful I found this site. It helps to talk to others. I just read where gene therapy is looking promising for PCD.