Recurrent sinus infection (and proposed surgery to correct deviated septum)

[Palmyra]

Hello to all, and sorry to have been gone for a stretch,

I haven't post much on the forum lately...and that's a good sign meaning my daughter's condition has been 'quiet' for a while. But, now back to reality and all things Weg.

Though she has been largely in a medical/RTX induced remission, she has been getting many recurrent sinus infections (we live in Texas, USA, home of every allergen known to mankind) to the extent that her local ENT is once again suggesting that she have her deviated nasal septum repaired. She had resisted such a surgery in the past, but the frequency and duration of infections is getting worse (and that can't be good for the lurking Weg dog).

Any experience here in the forum with such matters? I know that several have had saddle nose repairs, but wondering about deviated septum repair? Similar?

Thanks in advance,

Jane

[Dirty Don]

I had the septum procedure, didn't want it, didn't think I needed it. Afterwards, I could breathe sooooo much better thru that nostril! OMG! Now, as to how it's done may be a different story for many. I didn't have the usual kind in that I had no packing, no bleeding, and no swelling...the repair of the septum was done much simpler than the old way. The ENT actually clipped away at the deviation/cartilage until it was as close to normal as possible, then overlaid the operated area with its own mucous membrane. I only had minor bleeding thru the nose for one day, had NO swelling, no pain...and once it healed I have been so much better off. It also seems a few people on here are complaining of the allergy season coming on and the inability to tell the difference from the WG sinus damage. My ENT simply had me take Claritin for a short while after the surgery, and when I feel allergy symptoms coming on. It has made all the difference for me since the surgery, and so far this season I have relatively no allergy symptoms...and everything is blooming here in the desert now...of course, we're at 80 degrees now...hehe!

[pberggren1]

Jane, is the ENT saying the deviated septum is causing the infections?

[Palmyra]

Many thanks dirty Don, and very happy for your successful outcome. So, you did have your procedure done by an ENT....did you scout about and shop carefully before deciding to proceed with this particular surgeon? That is one of my concerns, as Alison's current local doc is near retirement and everything in his office is a bit antiquated.

Hi Phil!!! I hope this finds you happy. And the answer to your question is absolutely YES. She goes from one infection basically to the next, many times requiring lavage with suction (ouch!), antibiotics and occasionally a burst of pred to knock out the inflammation and infection.

My concern would be finding the local doc in Austin, TX that would have the skills with the newest/minimally invasive procedure to make the correction.

[Dirty Don]

[QUOTE=Palmyra;66552] So, you did have your procedure done by an ENT....did you scout about and shop carefully before deciding to proceed with this particular surgeon? That is one of my concerns, as Alison's current local doc is near retirement and everything in his office is a bit antiquated.

Yes...mine was done by a Dr. Lal @ Mayo (PHX clinic). I'm fortunate to live near them and am now a member of the Mayo family/team, so with the exception of my internist, most of my WG work is done by Mayo. Mostly cutting edge stuff where they can apply it. Ask the Vasculitis Foundation for ENT docs near you. Also, Phil is very knowledgeable about which docs are where...might ask him. Best of luck!

[pberggren1]

If I was having surgery on my nose I would want the best. Dr. Lebovics in NY is the best for this, but traveling might not be possible. I'm sure there must be some doc in Texas that would be half decent.

[mishb]

I don't have a saddle nose but the septum and cartlidge has totally collapsed inside. I have not been able to breathe through my nose for many years and don't have the sense of smell.
My ENT wants to operate but will not do so until I am off medications.......so, I guess it may not happen.

I know exactly how you daughter feels and hope she can find an excellent ENT surgeon to do the job.

[Palmyra]

If I was having surgery on my nose I would want the best. Dr. Lebovics in NY is the best for this, but traveling might not be possible. I'm sure there must be some doc in Texas that would be half decent.

Yes Phil, I too have heard of Dr. Lebovics and that he is the 'go to' guy to consult and see for all things noses and Weg. I do know of some very talented local plastics docs....I just don't know if any of them would be willing to consult with Lebovics. Speaking of noses and ears and all things attached to the upper respiratory system, how are you?

All the best, and I hope you have a great day!

[Dirty Don]

[QUOTE=mishb;66597]My ENT wants to operate but will not do so until I am off medications.......so, I guess it may not happen.QUOTE]

Mich...I had the surgery while still on fairly high dose of pred and the current mtx...ENT took care to limit bleeding (membrane overlay) & I suffered no infection from it...just sayin...look into it...especially since you can't breathe thru the nose...

[pberggren1]

I'm doing okay. Thanks Jane. I still struggle with the coughing up of mucus every day. Some days I can't leave the house because of the mucus plugs. I feel my breathing is getting worse again. And I just pushed my dilation procedure back to April 25th.......oops. Hopefully I can hold out okay til then. Still lots of crusting and bleeding in nose. I have to irrigate with the waterpik at least twice a day to get out the nasties and keep it moist. Winter here is really dry.

I know a few Weggies in Canada that go see Lebovics for the nose surgeries and tracheal stenosis. I would personally want the best, and Bob is the best.

[Palmyra]

Sorry to hear of some continued struggles Phil, but you are rather amazing and to be admired. No fears of sharing all of your plugs/boils/blood and guts for the benefit of any Weggie that speaks English!! Thanks for all of your shares as they enlighten the entire bunch of us. I have read of Dr Lebovics and his solid gold reputation...and consider that an option if we feel compelled to travel. There are no Vasculitis "Experts" in Texas.

Alison has been treated at Mayo, Rochester several times (pulmy= Ulrich Specks, and a couple of ENT procedures there...it's just a long way from home).

Don, do you mind detailing a bit about your recovery....was this an inpatient procedure, or day surgery? How long was your recovery? Did she give you any indication of possible scenarios if your septum was not as strong as it evidently was? (I am concerned that my daughter's may be friable) Thanks!

Jane

[pberggren1]

Thanks Jane, but it is really just my duty to share what I can. I don't consider myself amazing in any way, not even close. And I certainly don't think of myself as one to be admired.

[Alysia]

. No fears of sharing all of your plugs/boils/blood and guts for the benefit of any Weggie that speaks English!! Thanks for all of your shares as they enlighten the entire bunch of us.

Jane

... and for the benefits of any Weggie, whatever language he speaks...:smile1:
although I needed the dictionary...:blushing:
comforting to find out I'm not the only one cleaning strange colorous staff from nose every couple of hours...

[Palmyra]

You may not think it Phil, but you are most worthy of admiration. :thumbup:

[pberggren1]

Ahh, Shucks. Now you got me blushing. But in all honesty, I just want to try and help people. I am not a superhero by any means.

[Dirty Don]

Ahh, Shucks. Now you got me blushing. But in all honesty, I just want to try and help people. I am not a superhero by any means.

Do you mean Batman isn't real...sighs...another icon gone...

[pberggren1]

Of course Batman is real. I am here, aren't I?

[Debbie C]

I had my regular check-up with my ent the other day and he said my ears and nose are still doing good,but I asked him about the inside of my cheeks being so puffy ( like cottonballs on the inside ).I thought for sure it was from my saliva glands and he would have a quick fix but he said it wasn't and he had no idea. He wanted me tested for allergies and possibly having Sjogrens syndrome. So I went the other day and had 12 tubes of blood drawn ( I had my monthly blood and urine test done at the same time ) Well it came back neg. for Sjogrens and my other bloodwork was pretty good. My sed rate was 20 and hasn't been that high in a long time.I won't have the results from the allergy test until this week and they said the pred. may hide any allergy. I even went to the dentist under his suggestion and had a scan done of my month and u could see how puffy it was but my dentist blew it of and said I had some exposed nerves and gave me a script for special toothpaste.I don't know what to do at this point,it gets so bad and I swear it's my glands by reading up on it but my ent is a really good dr. I don't know what to do next

[annekat]

I can understand why all this would be upsetting to you, Debra. It's so frustrating when medical and dental professionals can't figure things out or minimize your symptoms when you know how unusual they are. I really hope someone gets to the bottom of this mystery soon. Maybe the allergy test results will help. My doc doesn't seem to think I can have any allergy symptoms when I'm on pred and MTX, but I don't believe him. I think I'm having a touch of seasonal allergies (asthma) along with my WG. I'm very familiar with what it feels like, and it's different than WG breathing issues.