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Thread: Changing irrigation tools?

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    Default Changing irrigation tools?

    My Wegener's is limited to my nose and vocal cords, with some redness appearing in my eye during a flare. My nose collapsed last year and I have no septum any more. I have been irrigating with a NeilMed squeeze bottle since sinus symptoms began in 2014.

    I had an ENT appointment Monday in which the ENT and I disagreed about the progress of my nose. I still feel like there isn't enough improvement with the crusting in my nose and drainage into my throat, but he think it looks better. As I think about it, I feel like the squeeze bottle doesn't reach certain areas inside my nose. I have a gaping hole between my nostrils, and I feel like the squeeze bottle doesn't reach the top edges or the lower front parts of my nose. When these build up, I'm more likely to try to use my fingers to get them, which increases risk for infection. I didn't think about this until after the appointment, so I didn't get to discuss it with my ENT.

    Did any of you change your tool for irrigation as your nasal structure changed? What is best for getting those hard to reach crusts?

    Thanks!

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    Default Re: Changing irrigation tools?

    Quote Originally Posted by Hannah View Post
    My Wegener's is limited to my nose and vocal cords, with some redness appearing in my eye during a flare. My nose collapsed last year and I have no septum any more. I have been irrigating with a NeilMed squeeze bottle since sinus symptoms began in 2014.

    I had an ENT appointment Monday in which the ENT and I disagreed about the progress of my nose. I still feel like there isn't enough improvement with the crusting in my nose and drainage into my throat, but he think it looks better. As I think about it, I feel like the squeeze bottle doesn't reach certain areas inside my nose. I have a gaping hole between my nostrils, and I feel like the squeeze bottle doesn't reach the top edges or the lower front parts of my nose. When these build up, I'm more likely to try to use my fingers to get them, which increases risk for infection. I didn't think about this until after the appointment, so I didn't get to discuss it with my ENT.

    Did any of you change your tool for irrigation as your nasal structure changed? What is best for getting those hard to reach crusts?

    Thanks!
    The machines like Sinus Pulse (refined by former WaterPik staff) have more volume than the squeeze bottles. The bottles can provide more force for a smaller amount of rinse. I use the machines at home and the bottles when I travel away from from home. Moving your head around allows the rinse to reach different areas of the sinuses and you may need to rinse several times if you have a lot of stuff to dislodge and rinse out. You can also use additives like Alkolol to help clean the sinuses or increase the salt concentration in the rinse. Flonase (steroid) nasal spray or Neil Med Nasal gel sprays can also help heal up bloody crust areas.

    Once you attain remission from active GPA the crusts will also usually heal up with regular and frequent rinsing.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Changing irrigation tools?

    Hi Hannah,

    I dont do nose irrigation. No idea why, but when I tried, the water went to my ears and it felt like hell.

    I had nose bleeding & crusting and have developed saddle nose from 2008 until 2013. The only thing that stopped it was when I started rtx.

    I think that your nose issues means that your wg is still active or smoldering and that the treatment that you get for it is not enough.
    What meds for wg are you taking ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Changing irrigation tools?

    My most recent change in irrigation is to get a sinus culture to identify possible infection. I seem to have had infection along with the weg crusting more than I thought. Then get an antibiotic powder to mix with the sinus saline.
    I use two Neilmed bottles. The first bottle I rinse with just the Neilmed solution. Take your time. Going slower is what will get the harder to get to crusts. Then with the second bottle mix up the saline and the antibiotic powder. I also add budesonide steroid to the second bottle to calm inflammation . After just a few days I usually get some improvement from this program. Rinsing frequently and thoroughly helps.

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    Default Re: Changing irrigation tools?

    Hi Hannah, I have had wegeners for 27 years. I have "limited wegeners", and my sinuses were hit hard. They have always been a real problem. I even had 2 "sinus scraping surgeries" after having the disease for 15 years. I have used many different ways to keep my nose clean over the years as my sinuses have changed. I have used NeilMed also, and it worked well for me. But now, my sinuses are pretty much gone. I also have the hole in my septum, and its more difficult to clean because of the way my sinuses are so "open" now. The way I clean my sinus cavity now (I still have crusties and buildup will block my breathing) is by using "Simply Saline" made by Arm & Hammer...its a nasal mist. The mist goes far, and completely moistens the inside of my nose. I will mist my nose for about an hour or so, just getting everything softened up. Then I use Q-tips to gently remove the crusties. I usually see my EENT every 2 or 3 months, and he uses an instrument to clean out the very back of my nose where I cant reach. I wish you luck! Blessings...
    Last edited by Lilly; 01-14-2018 at 08:38 PM. Reason: added a line
    Life is a Gift~ Lilly

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    Default Re: Changing irrigation tools?

    I follow a program similar to me2. Normally I just rinse with saline using the NeilMed bottle. When I get more serious blockages or fear I have an infection developing I break out the antibiotic and the budeseonide. In my case the antibiotic is Bactroban. They are both prescription meds, and I believe this use for them is "off label", meaning it is not what they were designed for, but they are effective. It's not clear if you have active disease causing you problems, or if it's "just" damage from what you've already experienced. In my case it's the latter.

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    Default Re: Changing irrigation tools?

    Quote Originally Posted by Hannah View Post
    My Wegener's is limited to my nose and vocal cords, with some redness appearing in my eye during a flare. My nose collapsed last year and I have no septum any more. I have been irrigating with a NeilMed squeeze bottle since sinus symptoms began in 2014.

    I had an ENT appointment Monday in which the ENT and I disagreed about the progress of my nose. I still feel like there isn't enough improvement with the crusting in my nose and drainage into my throat, but he think it looks better. As I think about it, I feel like the squeeze bottle doesn't reach certain areas inside my nose. I have a gaping hole between my nostrils, and I feel like the squeeze bottle doesn't reach the top edges or the lower front parts of my nose. When these build up, I'm more likely to try to use my fingers to get them, which increases risk for infection. I didn't think about this until after the appointment, so I didn't get to discuss it with my ENT.

    Did any of you change your tool for irrigation as your nasal structure changed? What is best for getting those hard to reach crusts?

    Thanks!
    I guess everyone's nose is different but mine is collapsed, too, and in fact, most of the bony structures of my sinuses and inside my nasal cavity have eroded away. Still, the saddle nose is the only thing externally visible. Now there are much fewer places for mucus to be produced and collect and the main one is around the top of my nose, and the nasal rinses get that out pretty effectively. There isn't any real crusting in that area, just globs of thickened mucus, smaller than before. There is some small crusting near the openings of my nostrils that is hard to dislodge, but I never felt like the nasal rinses got at that area much anyway. And I still do get the dripping from the back if my nose into my throat, with the resulting coughing. I find that NAC, or N-Acetyl-L-Cysteine, an amino acid taken as a supplement, thins the mucus and helps a lot with dislodging it and getting it out of there, and makes it easier to cough up out of the throat.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: Changing irrigation tools?

    Hi Anne, I have written down the amino acid you take as a supplement...I think you and I have about the same amount of destruction in our sinuses, by the way you describe yours now. I could definitely use something to help the mucous that builds up in my throat and causes me to cough all the time. And I was wondering, unless I am on a high dose of steroids (during a flare) I tend to have a lot of mucous, especially in my ears. Do you have that problem? And if so, does that amino acid help that? Thanks Anne Blessings and love
    Life is a Gift~ Lilly

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    Arrow Re: Changing irrigation tools?

    My ENT and I worked together with the wands from the sinu-pulse machine to learn to get one of the wands, without the tip, into my nose safely and get the water jet where the crusts are. He showed me the proper way to insert the wand and it has worked great to keep my nose clear.

    One technique that I found, and that my ENT agreed was a great one, is to run antibiotic with the waterpik on the slowest setting while pinching the opposite nostril closed. When the water starts to tickle the top of the palate, stop the flow of water and let it sit in the nose as long as possible. (It is not really that hard after a while.) This method gets the solution into all the dark, damp nooks and crannies of the nose and sinuses, where the infection hides and breeds the most.

    Switching to the sinu-pulse and waterpik type devices has been the single best thing I have ever done for my nose and sinuses. I got through a sinus only flare-up in 2013, where my sinuses "look like hamburger" (ENT's words) by diligently rinsing. At one point, I was running almost 6-9 liters of saline through my nose every day. I would mix the saline in one of these 1 gallon pitchers. I used those useless little storage containers that come with big sets to pre-mix slat and baking soda mixture for one gallon at a time. During the worst of this time, I was at the ENT weekly to have crusts pulled out.

    Today, I am on RTX, and my nose has recovered quite a bit. I have normal linings in my ethmoid sinuses, and my maxillary sinuses are better, but scarred. I still have minor crusting and rinse at least 2-3 times a week.

    Good luck with your battle!!
    Last edited by MikeG-2012; 01-16-2018 at 11:28 PM.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Default Re: Changing irrigation tools?

    Hi Mike, that is such a great post! Knowing that patients like you are doing things like this, and saving their sinuses, is great news to me. I hope that your post will encourage many new wegeners patients, and also, those who still have some of their sinuses intact. I did a lot of rinsing, and irrigating, for many years, but it never stopped the disease from slowly eroding my sinus tissues away. Once they are gone, there is no way to get them back! I am so happy for you, and that your doctor has helped you with this way of treatment. Sounds like you are a very dedicated patient also, who wants to be in control of this disease, and not the other way around!! Blessings,
    Life is a Gift~ Lilly

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