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Thread: Sinuses and polyps

  1. #1

    Sinuses and polyps

    Hello,
    I am a parent of a 5 years old boy, living in Poland. He had already 2 surgeries to remove polyps from his sinuses. And polyps came back after 6 months...
    I am wondering what kind of treatment is common in other countries than Poland, when dealing with polyps?
    My son had Nasonex (steroids), Sinus Rinse twice a day. I heard about some implants that people with CF had in the US, after removing polyps??? Please give your opinions, thanks so much
    Agnieszka

  2. #2
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    Hi Agnieszka. I can sympathize with you. My 9 year old has had three polyp surgeries in 3 years. They return rapidly, at least in three months, and we spend the next 9 months trying to manage them and delay surgery as long as possible. Then they become so uncomfortable, he wants surgery. The first time, he started having double vision. The opthamologist thought he needed glasses. But the ENT (ear nose and throat doc) knew the polyps were pressing on the optic nerve and considered surgery an immediate need before permanent damage. His vision returned to normal immediately after surgery to remove the polyps - much to the surprise of the Opthamology department. We have also come to suspect that the bugs in his lungs are introduced via his sinuses.

    I suspect it was my post about sinus implants that sparked your question. When our doc proposed using an implant, I posted questions about it to see if others had used it and I attempted to research it as thoroughly as possible. We just went through surgery no. 3, 6 weeks ago. His polyps get so large so fast that the ENT wanted to try the new Device. It's called a Propel Implant by Intersectent. There are a couple of Internet sites on it and you can google it to find them. One of them is www.propelopens.com. Another is www.intersectent.com. As it was explained to me, it has only recently been approved for use. It is basically a birdcage type device that is infused with a steroid and the entire device dissolves over a period of 4 to 8 weeks. It is inserted after the polyps are removed and is supposed to keep the sinuses open and prevent scarring as they heal. You can look at their studies linked on the site. I understand they are not a cure, but can delay the recurrence of polyps, which is the name of the game for now. There isn't any guarantee, so we watch and wait. From my research, I understand that similar devices were tried at one point, but they didn't contain the steroid and were not as effective as those that did.

    I will add a few considerations here. First of all, his pulmonologist didn't give him any antibiotics before surgery, no tune up, as we have done before, because his PFTS had been so good and his last sputum culture was pretty clear. I'm not sure I would do that again. A few days after surgery it looked bruised under his eyes and his eyes got puffy and he had a fever of 101 - even though they put him on an antibiotic post surgery (Zithromycin). I had not seen this reaction to polyp surgery in him before. He's always done beautifully with no post op infections or complications, not even any pain, after the prior two polyp surgeries.

    They did culture the polyps and junk they removed from his sinuses and found all the nasty bugs in his sinuses. So they took him off the Zithromycin one day early and switched him to Clindamycin for 10 days. In addition, the doc had recommended sinus saline flushes after surgery, but after they got the culture back he didn't want us to do that. Instead he prescribed something a bit novel too. He started him on an atomizer, not a nasal Nebulizer or a sinus rinse, with two compounded meds for the sinuses - betamethazone and tobramycin - twice a day. I was really nervous about that one and did a post on it too. I had great info from two posters, not about an atomizer which no one had used before, but about nasal rinsing and nasal nebulizing with compounded meds instead of just saline. It led me on a trek through studies about that too. Whew. His ENT explained to me that the atomizer would reach more sinuses than nebulizing, and he wanted us to try. I had lots of concerns, but the pharmacist at our CF Clinic also did the research and said that it would not be absorbed into his blood stream in sufficient quantity to in effect double dose his meds (our guy lung nebulizes TOBI for pseudemonas as it is), and that in fact the ususal nebulizing of TOBI results in very little med in the blood stream as it is - nebulizing is another topical application only this time to the lungs. I even found some posts and studies suggesting that nasal antibiotics could be pretty effective. So, I tried to get up the courage to do this.....but being so nervous about messing with my little guys body and doing something wrong - I took the atomizer, compounded meds and my son to the ENTs office and said "YOU DO IT!". I know he thought I was nuts and probably not too happy that I had delayed it a few days while doing all the research and staring at the machine! But our ENT is great. He jumped right in and showed me how - after reviewing the machine pamphlet a bit! We've done it twice a day since. It is a little awkward, and I insist on sterilizing the machine parts after every use by boiling in water for 20 minutes. The pharmacy the machine came from told us not to boil even though the machine pamphlet says you can do that. The pharmacy said they've had occasional complaints that the parts melt with boiling. I told them that if I can't boil, I won't use it. So far so good.... If you ever atomize Tobramycin, I will suggest you remove the vial from the fridge for a few hours before - atomizing ice cold liquid couldn't possibly feel good!

    Then, a week or so after he finished the Clindamycin, he came down with strep. I've wondered if the steroids didn't make him more susceptible while they were dissolving. Just seems odd that a sinus/throat infection was timed that way. Especially when none of us caught strep too including his little sister - despite the fact that strep is highly contagious.

    In addition, the parts of the implant don't seem to dissolve quite as nicely as I thought. I imagined they would simply absorb into his nose. The ENT took out a big chunk of it from one nostril that had accumulated nasal secretions (read that as "snot") around it at 3 weeks or so. He did explain that we might see him blow out parts that looked like little white wiry threads. Unfortunately for our little guy - they can go down the throat at which point he would move them into his mouth and spit them out! That was disconcerting until the ENT said it was okay and he could even swallow them since they are a protein that is digestible. But at about 30 to 45 days they are all gone.

    As for results so far? So far, his nose is clear as it can be. We are 40 days post surgery. He went to the doc a couple of days ago and not a polyp in sight. The ENT was tickled. He thought his sinuses look better than they had in years. That was our third post surgery visit. And the ENT does decongest his sinuses each time and suction any mucous out. I will say that after atomizing I make sure he blows his nose, instead of sucking it up like he was used to doing with polyps. And on several occasions we have seen him blow out large quantities of that thick discharge that has clogged his sinuses before. So I'm hopeful. I figure three months post surgery is our test. He always had polyps again by three months on prior occasions. We will see.

    I hope I haven't bored you with too much detail!

  3. #3
    Hi! I had sinus polyps as a child for years and had probably 30 sinus surgeries. Eventually, I did outgrow them - I haven't had a sinus surgery in 5 years for polyps. That being said, I am scheduled to have another sinus surgery this year but it is not for polyps so at least those stopped! This is a pretty common problem in CF, they are quite aggressive, and there's not much to do besides have them surgically removed. Saline rinses are great, though!

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    Hi kosdancer! You were a responder to one of my previous posts about the nasal atomizer. I believe you said at the time that you had done sinus irrigation with tobramycin before, but your ENT decided that saline rinses were just as effective. Do you know if your ENT indicated where that information had come from? Is there a study of some kind out there? I haven't found one. Just wondering myself if this sinus atomization is increasing chances for delaying polyp formation or perhaps helping keep bugs out of his lungs. Thanks!

  5. #5
    thank you all for quick and very valuable and helpful replies! You have much more advanced therapies than we have here in Poland, but we have good doctors here and they want to learn and implement the knowledge here in Poland, to make CFers life better.
    My son doesn't have any bugs found in the lungs, but he does has Staphylococcus aureus in his sinuses. He received Biotum antibiotics after the surgery. What king of nasal atomizer you use? We have Pari Sinuses machine as a nebulizer but I don't see any good results while using this.
    Thank you Gammaw especially for your long, and very detailed reply, this is very helpful!!! I will show those findings you have, from your researches to our doc! I keep my fingers crossed for all of "our family"
    Warmest regards from Warsaw

  6. #6
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    I'm glad if I have been of any help. Please do understand I am not an authority. And we don't know yet if this new approach for our son will be of any help. The propel implant was not developed just for CF or even just for polyps. It is generally used for chronic sinusitis as I understand the literature. I think this may have been the first application in a CFer. I do know the manufacturer rep was present at my sons surgery. If I were in your position - a mother wanting information on potential therapies from a foreign country - I would ask my doctors to contact a physician here from a high ranking approved CF Center. I have almost always found our physicians to be more than willing to share information and consult with other doctors. Since you are obviously a researcher yourself, I assume you know that the Cystic Fibrosis Foundation here accredits and reports results from the approved CF Centers in the United States. You can find that data on their website www.cff.org. That may help you locate someone specific to contact. My prayers to you and your son for a long life. Feel free to contact me or others on this site with any questions!

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    By the way, the sinus atomizer is the NasaTouch distributed here by Sinutopic Inc. The box says it is made in Italy.

  8. #8
    thank you again. Yes. I have talked to my doctor and she would contact someone in Cf Center for more information. My prayers to you and your son too. Thanks so much

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    Gammaw,
    I just wanted to send you a huge mommy hug. I can only imagine how stressful and worrying all that was. It sounds like it is truly cutting edge "best practices" but had to feel like your little guy was a guinnea big and had to have left you a wreck. I'll say some prayers it has turned the corner and has addressed the problem.

  10. #10
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    Thanks so much AboveAll. You have no idea how nice that was to hear - that someone who knew just how frightening and stressful it has been and thought enough to say so! You're absolutely right. I've been a wreck! Thank you.

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