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Agnieszka Jaworska
04-14-2014, 06:51 AM
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

Gammaw
04-14-2014, 09:36 AM
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!

kosdancer
04-14-2014, 11:35 AM
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!

Gammaw
04-14-2014, 11:47 AM
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!

Agnieszka Jaworska
04-15-2014, 05:48 AM
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

Gammaw
04-15-2014, 07:24 AM
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 (http://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!

Gammaw
04-15-2014, 07:27 AM
By the way, the sinus atomizer is the NasaTouch distributed here by Sinutopic Inc. The box says it is made in Italy.

Agnieszka Jaworska
04-15-2014, 08:00 AM
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

Aboveallislove
04-15-2014, 08:20 AM
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.

Gammaw
04-15-2014, 09:22 AM
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.

Gammaw
04-22-2014, 09:33 AM
Aha! Interesting article about to be published in the Journal of Cystic Fibrosis. It appears they have documented a correlation between lung pathogens and those found in the sinuses. And have experimented with methods to eliminate them centered on topical administration of sinus antibiotics as well as oral treatment for the lungs. I'm not sure how I get a copy of the articles full text though, since you apparently have to have a subscription - which costs $334! I will have to ask out pulmonologist or ENT. IF anyone here has access, could you share?

http://www.cysticfibrosisjournal.com/article/S1569-1993(14)00072-1/abstract

Aboveallislove
04-22-2014, 11:45 AM
Got it. Pm me an email and ill send it to you.

Agnieszka Jaworska
04-23-2014, 08:38 AM
If you could share this article with me, would be great. thanks so much. this is my email: [email protected]

Gammaw
04-23-2014, 12:28 PM
I will send it as soon as I get home.

Agnieszka Jaworska
04-24-2014, 02:56 AM
Thanks a lot!

Agnieszka Jaworska
08-28-2014, 12:39 AM
Hi there!
imhope you and Your families are OK.
i have some news to share with you. As I told you, my son had 2 surgieries to get rid of polyps in his sinuses, and after last one, polyps came back after 2 months. He takes steroids, makes sinus rinse every day, inhales salines through Pari Sinuses system. But it doesn't help at All. His nose was bloked completely.
in a meantime, he needed to take ibuprofen, as he was hit with the ball and had a pain in a leg. I discovered that after one dose of ibuprofen his nose was completely clear. I made a couple of trials to be sure about the connection with ibuprofen.
i shared it with our doctors, they were surprised but advised to continue with ibuprofen but with a very limited dosage, so my son takes 4 ml of ibuprofen once a day.
and his nose is clear, polyps are shrinked and we don't needed any surgery right now.
Did you have any similar or close experiences with ibuprofen?
Take care!
Agnieszka

Gammaw
08-28-2014, 05:26 PM
Wow. Great results from ibuprofen?! It makes you think the polyps are an inflammatory response, which is what I've gathered from other sources. But you would also think the steroids would have helped. I'll have to see how that works here too.
Right now our son has minimal polyps even close to 6 months from his last surgery - a record for us. As you may recall, our last surgery included a new approach using steroid infused sinus implants that dissolved within 30 days. His ENT was thrilled with the results. No polyps at all at three months post which was also a record for us. He has a small polyp now on one side that the ENT says is coming from a sinus out of reach of the implants. We also added an atomizer with tobramycin for a couple of weeks after surgery because the culture included PA. So things are better on this end too! His sputum culture is also clear of PA since surgery too.
I'm so glad to hear you've cleared things up with ibuprofen. We'll have to try that first if the polyps start up again. Thanks for the tip. Let me know how it's going! I look forward to updates!

Agnieszka Jaworska
08-29-2014, 12:27 AM
Gammaw, that's great to know that you're doing well also! I am keeping you in my thoughts. All the bestiami from Warsaw, Poland :-)

JENNYC
09-03-2014, 01:39 PM
My daughter was having sinus surgery every 3 months for a while and considered putting her on Ibuprofen therapy as they called it, but they had told me that they had pretty much quit that practice as it was hard on the liver or kidney's... I can't remember which now. Just thought you would want to know that. Good luck!!!!

Gammaw
09-03-2014, 02:56 PM
That makes sense, Jenny! Especially long term. Good to know. I wonder how long it takes on Ibuprofen to shrink them. And then I wonder how long before they come back.....?

MGrossan
09-05-2014, 10:49 AM
For my patients I have them add Xylitol - the sugar used by diabetics - to the Hydro Pulse basin with the Breathe.ease Packet. They start with two teaspoons to the basin with warm water, then gradually increase up to six teaspoons each day. This reduces the total bacterial count and allows for better natural healing. see
www.grossaninstitute.com
Reminder: when you hum - low pitched - that breaks up thick mucus bonds. cF should hum as much as possible.

Gammaw
09-05-2014, 01:29 PM
I've been looking at your material Dr. Grossan. Just a couple of questions about your post initially. When you say you recommend adding xylitol for "your patients" are you specifically talking about that addition specifically for CFers? Chronic sinus sufferers? Everyone? And why would you use xylitol? I thought anything sugar based tended to feed bacteria. And no I don't pretend to have medical training! I just attempt to understand problems that confront us. Thank you for your post.

kmhbeauty
09-10-2014, 11:47 PM
xylitol is in many natural nose sprays. It is supposed to "kill" bacteria. I am not sure if kill is the right word. Its worth a try! Ive had 11 polyp surgeries so Ill try anything. The nasal spray that I am using has it in it. I do like it so far. I mixed my own once and got a nose bleed. Just be careful not to put too much

Gammaw
10-01-2014, 12:28 PM
Do let us know how you do on xylitol, kmh, if you decide to try it out! My little guy just went in for another checkup with his ENT. He's keeping a really close watch on his sinuses - at least once every two months. We are now 7 months post sinus surgery (complete with sinus implants followed by sinus atomizer with compounded meds) and still NO POLYPS. Incredible for us. He did see one small one on one side that was not even classified as a "grade" at all. (i.e. not Grade 1 through 4 - just a dot that isn't obstructing anything yet). The ENT did clear out the thick mucous that accumulates though since obviously the cilia do not function well enough in CF to do that. And he wants him back in 2 months again - we figure wed rather let the ENT clean him out every two months with suction than risk another sinus surgery! I'm thrilled and more importantly - so is my DS.

bbell0420
10-08-2014, 12:33 PM
Hi! My name is Brooke and I have a 3 year old son with CF. He had his first sinus surgery for polyps on 3/5/13, then they came back and he had his second surgery on 8/7/13, then had his third surgery on 3/6/14 to remove the polyps again. We were doing everything with the nasonex and rinse but they kept just coming right back. After this last surgery our ENT added a steroid to his nasal rinse that I do every night before he goes to bed and they have not come back so far. This has been the longest we have gone with out a sinus infection or sever cold and my son can now breath normally when he sleeps. I will check the name on the steroid and post it for you here later. Good luck!

Gammaw
10-08-2014, 10:42 PM
I lot look forward to seeing the name of your steroid....!

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