Weg, deviated septum and surgery recom'd by local MD

[Palmyra]

Hello to all,

Just like last year, my daughter finds herself in a sinus predicament. She was treated with Rituxan last Spring, her B-cells have repopulated, and she is currently suffering from another sinus infection. Her local 'old school' ENT has cleared her sinuses mechanically several times over the last few weeks, and he states that unless he surgically corrects a deviated septum she will continue to have recurrent sinus infections. She has had both fungal and bacterial infection of the maxillary sinus. Treatment for the fungal infection at Mayo, Rochester was debridement, and they did not recommend septal repair.

Our concern is operating on a Weggie septum, and the risk of saddle nose or inciting more inflammation to an already inflammed area. I seem to remember that those that have seen Dr Robert Lebovics suggested he does not do surgery on Weggie sinuses except in extreme circumstances.

Where can I find current information on this subject?

Thanks for any suggestions in advance.

Jane, mom of Alison

[drz]

I guess I would if possible go get reassessed at Mayo and with Lebovics since procedures and knowledge some times change as do our physical conditions and see if there is a consensus today. Personally I would not have surgery unless doctors agreed it was necessary and likely to help. The exception might be if I absolutely couldn't stand present situation and was willing to take a risk that it could get worse.

[pberggren1]

From what I have hear from the top ENTs that know Wegs, including Dr. L, I would not get and sinus or nose surgery unless is was absolutely neccessary. I have saddle nose and a deviated septum. All 9 ENTs I have seen said they would not do surgery on me to correct it because it could cause a Wegs flare and if I can breath okay through the nose then there is no problem.

[Geoff]

I was operated on for a deviated septum and had my first Wegs "attack" about a month later with diagnosis of Wegs 4 months later on. I can only surmise that the operation instigated the Wegs which may have been lying "dormant", I just dont know.
The one good thing is that I have a wonderful sense of smell and taste and I guess you could drive a bus up my nose. I am just getting over a cold and I do believe that because my airways are so open, there is a reduced chance of infection building up, but hey I'm no doctor.
I would agree with Phil and Drz however that it would be like poking a hornets nest to start drilling out your septum.

[delorisdoe]

My wegeners doctor flips out now everytime he sees me over the fact that I had surgery in june-I did not there is just some communication problems-he insists he must be consulted before any non emergency surgery. Too bad he keeps forgetting that I did not have surgery in the first place.

[pberggren1]

My wegeners doctor flips out now everytime he sees me over the fact that I had surgery in june-I did not there is just some communication problems-he insists he must be consulted before any non emergency surgery. Too bad he keeps forgetting that I did not have surgery in the first place.

Why does your Wegs doc think you had surgery?

[Dianne]

My ENT has recommended that I have a "button" inserted to close my perforation.

[delorisdoe]

Why does your Wegs doc think you had surgery?

Communication problems.:thumbsup:

[drz]

Communication problems.:thumbsup:

Send him an email with your avatar and then he might remember.:biggrin1:

[delorisdoe]

Send him an email with your avatar and then he might remember.:biggrin1:
I'm not sure he knows how to use a compter:unsure:

[Palmyra]

Thanks for all of your suggestions and experience on this subject. I think the daughter has decided that she needs the local ENT right now, even though it is obvious he is not a Weg expert. She has said she will tell him she respects his experience and opinion, and she does not mean to be non-compliant regarding his recommendation to correct the deviation in the septum (his opinion is that the deviation is creating an architectural host for pathogens, which is likely true...our concern is that with active Weg, her septum may not survive the surgery).

Her short term, immediate need is for conservative efforts to rid her of current infection so she can get her Rituxan infusion. Once she achieves a medically induced remission, she can re-visit his and expert suggestions to do surgery on the septum.

She and I both agree that he would not be the one to do the surgery, and she would either go to Mayo or consult with Lebovic, but that might allow her to mend her current acute problem in state, in a timely manner, rule out fungal sinusitis and get the Rituxan infusion to avoid further head ache and complications. Man, the machinations one must go through, when you feel you know more about your condition than one of your docs!!!

Does this sound reasonable?

[pberggren1]

This sounds reasonalbe to me. But I had rtx while I still had this lung infection.

[Palmyra]

I'm always surfing, and found this article comparing the the two most recent large studies of RTX.....there is simply not much literature regarding ENT involvement and Weg:

Rituximab in ANCA-associated vasculitis: a revolution? (http://ndt.oxfordjournals.org/content/early/2011/09/08/ndt.gfr507.full)


" During the 15th ANCA Workshop, the Cambridge group reported their experience with protocolized re-treatment of rituximab [22]. When rituximab was given every 6 months (1 g after initial dose of 2 × 1 g), 22% (11 of 49 patients) relapsed. In the study by Niles et al. [23], continuous B-cell depletion with rituximab every 4 months was used resulting in only nine relapses in 72 patients. Although these studies are all rather small, they point out that maintenance therapy with rituximab may be an option to control the disease. Another interesting approach has been used in the Mayo Clinics where timing of re-treatment with rituximab was based on B-cell counts and ANCA levels. Pre-emptive therapy of rituximab resulted in persistence of remission in all their patients (N = 138 courses of rituximab) [24]."

[Palmyra]

This sounds reasonalbe to me. But I had rtx while I still had this lung infection.

So Phil, your docs treated you with RTX while you had a lung infection? What type of infection (bacterial/fungal/viral?) I hope it is better my man.

[pberggren1]

It is a very rare and deadly bacterial infection called Mycobacterium Abscessus Lung Disease.

[Palmyra]

Wow Phil,

I wish you much luck in punching through this condition. A mycobacterial pneumonia is a nasty bugger....are you still on antibiotics? It appears that many Weggies are either fighting to get into medical remission and then fight subsequent infection all at the same time.

I will keep the group posted as per Alison's progress. Best wishes to you and to all!

Jane

[pberggren1]

Thanks Jane.

I am off all antibiotic now. I have been since early August 19.

Yes, most Weggies either fight the disease or infections or both. All Wegs specialists have told me that infections are what most Weggies have to deal with the most.