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Thread: Help with Sinuses. Recommendations needed to break up sinus junk!

  1. #1
    TheSaltyOne
    Guest

    Question Help with Sinuses. Recommendations needed to break up sinus junk!

    Hi guys,

    Does anyone have GOOD recommendations on how to break up sinus mucus/junk? Here is my situation.. I've had 4 sinus surgeries now, 2 clean outs and 2 drilling, and my sinuses STILL get blocked! When I say blocked, what I'm talking about is I literally have sinus pressure headaches every day, some days ibuprofen, tylenol, mucinex, and sudafed dont even take care of it.

    I do sinus rinses 2-3 times a day using distilled water, essential oils, 1 tablespoon of pickling salt, and .5 tablespoon of baking soda. I've used essential oils on outside of skin to help relieve pain and pressure but nothing majorly helps. I occasionally will have times where I get a lot of junk out doing sinus rinses. I can feel extra pressure at some point, then will sniff/snort a lot, rinse, and will get pea size pale green and/or dark tan chunks out. Of course after this, my pain is relieved and I feel better but it is annoying that this hurts so bad and gets built up so much.

    So my question is.. does anyone know any good and effective ways to break that crap up better so that it wont get built up so much and be so hard to get out?

    Thanks to any suggestions!

  2. #2
    Super Moderator
    Join Date
    Mar 2012
    Posts
    2,034
    Not quite what you're asking, but Gammaw's son had a procedure. Here's her initial thread: http://forum.cysticfibrosis.com/thre...t=gammaw+sinus
    I can't find the one with the details, but I think it is still working well. I'm hoping she sees and can elaborate. I can't find the other thread with more detail but you might try searching for that. Good luck!

  3. #3
    Senior Member
    Join Date
    Jan 2015
    Posts
    278
    Have you tried a nasal spray like Flonase? That helps me a little (but my sinus problems don't sound quite so bad).
    Thirtysomething Dad of three (IVFw/ICSI), Mormon, Engineer in Utah.
    I was dx at 1 yr (failure to thrive), D▲F508, FEV1~94%, PA and MSSA, PI.
    2 brothers w/CF, 3 siblings w/out. My wife and parents are saints.

  4. #4
    TheSaltyOne
    Guest
    Yes I should have mentioned I do use flonase twice a day as well.

  5. #5
    Super Moderator
    Join Date
    Apr 2007
    Posts
    1,133
    Hi SaltyOne,

    Sorry your dang sinuses give you so much trouble. I have a couple ideas...

    What do you currently use for sinus rinses? I ask because I use a Waterpik (yes, the water flossers for teeth) with a special attachment that my ENT gives to patients. It has a lot of pressure and works a million times better for me that the Neilmed bottle, or Netipot. I get so much junk out it is absolutely amazing (and disgusting)!

    The other thing I have done in the past is used tobramycin in my sinus rinses. It seemed to help a lot.

    The other thing is that I've also have many sinus surgeries. The last two surgeries I've had, my doc used packing soaked in tobramycin during healing. He says he thinks that really helps A LOT in regards to keeping them open and clear.

    Not sure if any of these would offer you any relief, but wanted to mention them in case!!

    Take care and I hope you find some relief soon!

    Autumn 34 w/cf

  6. #6
    TheSaltyOne
    Guest
    Triples15 - Wow thanks for all the suggestions! I will definitely try those now. I too got fed up with using the gentle netipot things so I moved onto a syringe. I just fill it with 20 ml of the solution each time and squirt it up there with some force lol. I do wonder what the special attachment is... that sounds interesting. I am definitely starting the tobramycin in my sinus rinses tonight and I'll try calling my ent tomorrow to see if he's heard anything about an attachment for the Waterpik!

    Thanks again!

  7. #7
    Super Moderator
    Join Date
    Jan 2009
    Posts
    575
    Hi Salty. AboveAll mentioned that my son had a procedure to remove polyps - again - but this time the ENT inserted a propel implant in hopes of decreasing the rate of recurrence. It did in fact delay recurrence but it didn't stop it. Instead of having them return within 3 months, it took about 8 months. Now that's a big improvement for us, but not as good as I wanted, obviously. They were indeed still small at the last visit, but his nose started bleeding recently - I'm sure it has to do with the aggravation to his sinuses that winter and its colds bring. He did however continue to culture MRSA in his nasal passages, so for those looking to eliminate that, I don't think it helped. Basically the propel implant is a steroid infused dissolvable cage that is inserted at the time of surgery to decrease the inflammation while your sinuses are healing. The steroids are released through the cage material which disintegrates over a 30 to 60 day time period. The disintegration was not uneventful, but painless. The cage can break apart as it dissolves and on more than one occasion, my son found a small piece in his throat which he would spit out. We also used a sinus atomizer during the following month with Tobi which had been specially formulated for the atomizer. I WOULD DEFINITELY NOT SIMPLY USED A TOBI VIAL DESIGNED FOR THE NEBULIZER. IT IS NOT FORMULATED FOR YOUR NOSE. Check with your ENT FIRST PLEASE. They can have a Tobi compounded for nasal rinse use if they feel that will help.

  8. #8
    Dank
    Guest
    For what it's worth to this conversation, I've had close to 20 sinus surgeries growing up, from ages 3-14. They removed bones in my nose to make surgery easier. I have not had any since. At some point my sinuses decided to drain on their own. Unfortunately that was not a permanent solution and now I will be scheduling an appt with an ENT today. I have tried sinus rinses but unfortunately my nose is mostly clear, it's the upper sinuses that the rinses don't really get to that ends up being the problem. I'm not sure how to best resolve, I've tried a bunch of different things over the years. Lately I've been extremely skeptical about any medications because I feel long term results are not accurately tested or determined properly. I will be chatting with the ENT and then attempting to discover a wholesome way to treat the sinuses based on that conversation. I recommend you do your research about the medications you are prescribed and determine the best solution for you or your child.

  9. #9
    TheSaltyOne
    Guest
    Gammaw - thanks for the tip!

    dank - yep, same with me. The only sinuses that cause me problems are the frontal upper ones (forehead). So it's extremely hard to get those flushed out.

  10. #10
    Junior Member
    Join Date
    Aug 2014
    Posts
    8
    Hi TheSaltyOne!
    I've had similar issues with my sinuses, even though they've never been so bad to have surgery (it's definitely out there as an option though). I recently went to see an ENT who specializes in patients with CF, and there are some new treatment options. Years ago, he told me first to try adding a drop or two of Johnson's baby shampoo to the nasal rinse- distilled water and two packets- and that might help to make it a little easier for things to come out. My current treatment, which I started about 2 months ago but has helped tremendously and I experienced a relief in my symptoms within a day or two, is to do the hypertonic saline rinse, wait 20 minutes, and then rinse with a regular saline rinse with Bunesonide added. Budesonide is a steroid rinse, and it works a million times better than flonase. Flonase can only get into the first little bit, but rinsing gets it all up in there. My ENT actually did not want to prescribe me any antibiotic nasal rinses yet unless I have a really bad infection up there- sort of a last resort option. And if there's a choice, they def. don't want you doing antibiotic nasal rinses all the time. And lastly I would add to stop rinsing with essential oils. They could be adding to the inflammation more than helping it.

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