Nasal Sarcoidosis

I have lung sarc, but also nasal sarc and my ENT was treating me with steroid nasal sprays and afrin, but this treatment is no longer working and I have tried almost every steroid nasal spray on the market, My ENT has advised me that she would like to try a procedure called "Turbinate Reduction Surgery" to help me get some relief, has anyone had this done or know anything about this procedure?

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I had the procedure done in Feb. and felt 100% better. Unfortunately, the symptoms have returned and I'm starting to have problems again. It's very difficult to find releif. Like you, I've tried several different remedies, but none seem to work. I have an appointment with my ENT on Wed.

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Yes, I am all too familiar with nasal sarc. I've had it for at least the last 3 years. The nasal steroid sprays and prednisone did not work very well to relieve my nasal sarc symptoms. I'm also curious about the "Turbinate Reduction Surgery".

Paradox or another member may have some info regarding this surgery.

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Hi Corlinwil,
Yes, I've had the surgery. You will probably get prednisone therapy as part of the treatment. It helped me for about a year. My sinuses work about 50%. One major problem is that when there is swelling, there is pain. When there is any allergic response...there is swelling and pain. My mucous is extremely thick and glue like. Even when I drink lots of water, the mucous is the same.
Of course you will feel great while the prednisone is in your body. Your nose will feel better than ever.
Please remember that EVERY CASE IS DIFFERENT!!! Ask your doctor how many of these surgeries he/she has performed and what is YOUR prognosis. Ask if this will have to be repeated in a few years.
After my surgery the doctor told me that the only way to relieve swelling FOR ME....in the future would be prednisone.
BUT....every case is different. If your ENT isn't a sarc specialist....find one!!! Here is contact information that you might want to use.

Sarcoidosis Family Aid and Medical Research Foundation
460A Central Avenue
East Orange, NJ 07018
Contact: Geneva Ausley, President & Founder
Phone: 201-399-3644 or 800-203-6429

Lots of Luck
DOLL

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Hi,

I visited my ENT last month and after hearing about my Sarc Dx, he noticed some growths in my left nostril. He has decided to removed them by surgery for biopsy as a precaution instead of doing it in his office.

I have been on Advair & Flovent only at this point since May 27th from Pulm Sarc Dx. Symptoms gone and life has resumed. Hopefully the surgery on Sep 12th isn't anything related to Sarc.

All the best to all and together we support each other.

AndyF16

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OK--I've had several nasal polyps removed in the last twenty years. Because I have a history of allergies and sinus problems, I never considered sarc as the problem. Now I wonder. I wasn't formally diagnosed until 9/06 and I never thought to ask. Did your dr say they were polyps?

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I'm sorry to hear that your symptoms have returned, now I am starting to wonder if the surgery is even worth it.....

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Hi Angela2750;

I'm so sorry you are suffering with this as well, but unlike you I do get relief from the Prednisone, but who wants to be on that stuff forever????? I am still in the considering stages of this surgery, I have received several replies and it sounds like the surgery really is not worth it...

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Hello the_dollinator:

Thanks for the contact information...I have received several responses that after the surgery the symptoms return, I not sure that it is even worth the hassle, my ENT is pretty familiar with Sarc, and she is the head ENT for the UPMC in Pittsburgh and has published several reports about this surgery, right now my lung MD is about to start me on another course of Prednisone because my lungs are acting up as well, so I still have some time to think about it, again thanks for the information, I would love to find an MD that specialized in Sarc, but you know how rare that is....Thanks again!

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Hi AndyF16:

I hope you don't have Nasal Sarc my friend, No I was not told I had polyps, just that I clearly had Sarc in my nasal passage, good luck on your surgery!

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Hi IrishGal:

No I was never told I had polyps, just Sarc in the nasal passage, it's something to look into, it can't hurt that's for sure..Take Care

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Hello , I also have just what you have and mine are also in all my sinus cavaties, back in 1993 i was the first one in the u.s.a. to have this surjury you're talking about and it helped so much, also my e.n.t. doctor @u.va. in CH"VILLE, VA.
I also have steriod injections directly into the sinuses it's a little uncomfortable but please believe me it {HELPS}
after my surgery i had to go back to the docs. every 6 weeks for almost a year but now twice a year i see the my doctor i"ve been doing good up until this year and now with the injections i know for sure it helps.
i can relate to you so much my friend because i also have the sarcoid in both lungs, with prayers and your doctors help i want you to know how much i feel for you doing this struggle .Please let me know what steps you're going through and if you need someone to talk to my emails on my profile on this wonderful site.
God bless and i'll have you in my prayers and my heart.

God Bless.
sarcoidbuddies.

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Hey Corlinwil,
I forgot to mentionthat One of the top ENT sarc drs. told me that it is best not to cut into sarc...even if it's in remission. I have saddle nose...which means that most of the suport structure is gone...from sarc. I was told long ago not to play contact sports or put my face, nose in jeopardy in any way. If an airbag deploys, or my nose should collapse for any other reason, then I'll get the surgery. I had a chance to get my nose reconstructed 6 months ago, however, I don't want to get the surgery and perchance...wake the sleeping giant.
Maybe this idea of disturbing sarc in remission is his alone????
Doll

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Hello Corlinwil,

I had the surgery in July 06 to reduce the turbinates, and then in Sept 06 to remove the lower turbinates. The surgery was not sucessful at all. The tissues they removed during surgery, have since return. My ENT doctor feels he don't know what else to prescribe. I been on Prednisone for 3 years, and plenty of nasal sprays. He states my nose has so much crusting, he don't know what else to give me. I have not smelled in 3 years. I continue to keet my mouth open for air passage. I currently have Sarcoidosis on my lungs, nasal passage, voice box, lesion over my right eyebrow and the side of my face (lymph node). I was just recently diagnose (06-28-2008) with breast cancer. Please continue to pray for your healing. I believe God is going to heal the cancer and the sarcoidois with the chemotherapy.

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Hi Corlinwil,

The symptoms that most of you are decribing were my first indication that I was ill with something. My only other symptom was stabbing type chest pain.

Ellis Hamilton wrote about this problem a short time ago and Paradox addressed the issue. I think it was titled "YO, What's in my Nose?" I may be off on the title but I think I'm close.

Please pardon the description of my symptoms. It was a crusty, dried up, clogged up, "mucous like glue", as Dollinator said, easy to bleed mess. My ENT is a fine Doc and could only come up with sinus infection. The antibiotics didn't touch it. I also had the feeling that it was sloughing off skin.

My biggest relief was by using a nasal spray called Ocean, which is a type of saline solution,that if I remember correctly came in regular or moisturizing. I used the moisturizing and applied wet, warm wash cloths on my sinus area. Every time I took a hot shower, it would break up and I was able to blow my nose, gently, afterwards.

This was my only attack. It disappeared after about 6 weeks. Then I had major lung surgery and they found the sarcoidosis.

Here's an idea. As they can only diagnose sarcoid by a biopsy, why not ask the doctor if he can swab the inside of your nose and send the sample off to the lab to see if it is sarcoid?

I just reread your post and see that you've already been diagnosed. Is that the way it was done? I'm not a doctor, so I cannot advise you on what to do. I will only say that I will not allow them to do that to me.

The good news for me was I never had another attack. I have heard that sarcoidosis loves scar tissue. I would ask your doctor if this is true.

Whatever you decide, I wsh you the very best.

Be Well... JanetG

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Hello Shan
Sarcoidbuddies
JanetGrant

Thank you guys for the blessings and I return them to all of you as well, sarcoidbuddies I just recently had the steroid injections and it has not worked yet, my ENT told me it would only be 3 days it has been a week & I am still waiting, my Lung MD is about to prescribe Prednisone so I am sure I will have some relief if only for a short while...Shan sweetie I am so sorry to hear that you have been diagnosed with Breast Cancer, you will be in my thoughts & prayers as you battle yet another horrible disease and if you just need to vent please feel free to contact me via e-mail @ corlinwil@verizon.net anytime...JanetGrant I currently use AYR saline solution, but it only helps with the crusting, it does not provide me any relief at all, but the steam from the shower does work for me as well, I have resorted to drastic measures and started using AFRIN again only temporary, but I want to breathe so badly...thanks my fellow sarcoid friends all the information and prayers

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