Sinus Surgery

anonymous

New member
Kait has been having headaches for some time now, at clinic the doc suggested that we have her eyes looked at so we did.... well her vision is 20/20 and 20/25, the eye doc says that normally he doesn't prescribe glasses for this eye sight unless one is having problems/symptoms. He did write out a prescription but i am not really convinced that it is her eyes. I think that it may be her sinuses, she does have a polyp and has for a few years now but it must not be getting bigger because they look at it every 6 weeks and none of the docs have said anything about it.. so i just figured it had shrunk. After calling her CF doc we do have a CT scheduled on 5/22 but i am really against Kait having surgery. I have read that alot of CFers have several sinus surgeries and after talking to the doc and knowing that in CF the sinuses will tend to swell again and again i think that i am totally convinced that i don't want her to have the surgery done. At our clinic they do tend to do alot of surgeries but i do not feel comfortable putting my daughter at risk for more bacteria, i feel that if it is not affecting her respitory and if her sinuses are not swollen too bad that we should just leave it well enough alone. I am really having a tough time with this because Kait and her father both want the surgery if the docs think that she needs it.... WHAT DO I DO?

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 

Emily65Roses

New member
A lot of people who have polyps removed have the same surgery over and over and over.

On the other hand... I had nasal polyps removed when I was 5. Haven't had that procedure again since. Not to say it'll never happen, but it's been 17 years since my first, and my nose is still doing okay. It's a little flared up on the right side (the offending side), but not enough to warrant surgery again.

That's just my experience with it.
 

Allie

New member
If the doc suggests, I'd have it...those sinus headaches and such can be pure hell. And even though they usuaally do come back...you usually have a couple of years of respite.
 

Faust

New member
Tons of people have no idea that "sinuses" run throughout your enite head. I mean literally your enite head. If you go in for a sinus cat scan/MRI, it is focused on your typical sinus areas. If you have a cat scan of "the head" (and i'm assuming the same for MRI), the entire head is looked at. There could be a strong chance that my headaches that I called brain cancer earlier could just be a badly inflamed sinus part, or could be something worse. Your sinuses spread throughout your entire head like capilaries in any limb of the human body. Just because it's on the back of your head, doesn't mean it's not sinuses. granted I could still be screwed in general and indeed have bad brain cancer, but if odd = donuts, I probably have a bad sinus issue to deal with, or maybe an enlarged cyst.


The person whp mentioned sinus surgery = many other surgeries after that, is very correct. There are some people (like the woman who posted) that can go a real long time without more surgeries, but typically, one cut = MANY cuts, for a very long time to come basically. If my diagnoses via the catscan tomorrow and the neurologists visit on thursday comes back that I just have a freaky sinus cavity acting up, I will take every available option before I turn towards surgery. I will look at surgery as an absolute laste resort, regardless what the diagnoses is.
 

MCPappy

New member
My brother and I (both w/ CF) had sinus surgery together about 6 years ago. His went great and mine went not so great in comparisson to his. After the surgery we had tube up our noses into our sinuses that we flushed every day with antibiotics for about a week. Before the surgery I was constantly having problems with being sick and having horrible sinus infections, but since I have had the surgery I cant remember having one.
I know that some people have to have them multiple times... which im sure is no fun, but in both my brothers and my case it really helped us and we havent had many problems since.

Surgeries are scary but it could be a large help in making your daughter feel alot better.
 

wuffles

New member
I had sinus surgery when I was 15 and haven't needed one since (that was nearly 7 years ago now). The surgery and recovery wasn't a pleasant experience, but I COULD BREATHE! I had actually started sounding like I was wearing a scuba mask when I talked, I couldn't taste things properly and there was a lot of pressure on my face (my face has actually changed shapes slightly). So I was absolutely thrilled after the surgery because it made me feel so much better.

In saying that, though, I would try everything else first, like SeanDavis. I have some polyps there but they are only small and are relatively controlled by Nasonex and saline nasal spray. It also helps if you find an ENT that you really trust.
 

cutiepatootie

New member
I have a polyp and I have been getting really bad headaches for about 3 years now. My doctor advised me against getting the surgery, he said if I can deal with the headaches don't do the surgery because they say its one of the most pain full surgeries you can ever have. I didn't want to deal with the headaches any more but I din't want to get the surgery either. So I am on a prescription called Gabapentin, and it seems to be working for me quite well. I have only been on it for about 6 or 7 weeks now. She should try another alterative first to try and get rid of the headaches before jumping right into surgery it might help her headaches out. Before I want on Gabapentin my headaches were extreamly bad, I was taking like 2 to 3 Ib Prophen like every 3 to 4 hours a day and I was counting down the minutes to the next dose of it, my headaches were that bad. I'd wake up with a headache, I'd go to sleep with a headache, they were so bad sometimes they would make me cry. Anyway's what I am trying to say is that maybe you should try to talk her into trying something else for her headaches first before she gets the surgery. It worked for me, not like I was thinking about getting the surgery I don't like that word. Medicine can do wonders sometimes too!

If her Doctor thinks she should get the sugery and your against it, I would first say to him I am really against my daughter having this surgery and then tell him exactly why your against the surgery. I would then ask him if there are other alternative instead of the surgery, like something that will help her sinuses, if they bother her allot. And if he could prescribe her some thing that could help her get rid of her headaches. There are allot of different types of headache medicine out there. Any how that's what I would do, and just remember you are just looking out for what you think is the best thing for your daughter. I hope I help a little, sorry for the long post <img src="i/expressions/face-icon-small-happy.gif" border="0">.

<img src="i/expressions/rose.gif" border="0"> Karla
 

anonymous

New member
I think your line of reasoning is sound and rational: avoid optional surgeries unless there are overwhelmingly favorable odds of meaningful and lasting improvement of the problem. How old is Kait? From other posts, it sounds like sinus surgery involves some uncomfortable/painful recovery so if Kait is just a youngster, maybe the idea can be shelved until she's old enough to weigh in on the decision herself.

My son with CF is just 3 and we take the approach of avoiding anything surgical/intrusive unless the Doctors say it will (a) definitely lead to a change in a bad condition or (b) provide information that will lead them to alter his treatment plan in an important way; otherwise we're pushing it off until the little guy can have more of a say in things.
 

Scarlett81

New member
I just wanted to ask if you had a cat scan. I wouldn't do anything before you have one. And-why not get another sinus doc and get a second opinion. It doesn't hurt.

I'm going through the same thing now. I've managed to keep a polyp at bay for 10 years. I went to the sinus doc, b/c I have hideous nasal drip. The physical exam revealed only bad infection-but the cat scan showed I was born without frontal sinusesd-the ones above your eyebrows-and the cat scan also showed massive scar tissue.

So thats my experience-don't do anything without a cat scan.
 

anonymous

New member
when i was 8 my sinuses were really bad, but they wanted to try every option before doing the surgery. my sinuses ended up feeling better, and i haven't ever needed the surgery, however i switched to the adult ent doc recently and he took a new cat scan and every time i see him, he asks me multiple times "how many times have you had sinus surgery?" and I say "none" and he says "WHAT??" because the bone in my sinus caveties is so degraded from years of polyps and whatnot. he always thinks i've had it multiple times...it's not for sure, but possible that had i had the surgery the damage wouldn't be as extreme as it is...so i wouldn't rule it out completely.

maggie
18 w/cf

ps. you should listen to you daughter, it's her body.
 
S

skh

Guest
My daughter had sinus surgery and did have polyps removed at that time. She was 11 at the time. The surgery did not relieve her of her sinus problems. The surgery was very painful for her and I don't think I will ever get her to do it again. But everyone is different, I have heard some people who swear by the surgery. Good luck with what ever your decision is!
 

NoExcuses

New member
Here's the gig : bacteria in your sinuses can soil your lungs. Whether you think it's actively happening or not - it is.

Additionally - the sinuses are like a large ball with a very, very small opening at the very very top. The sinuses are constantly producing mucus, and it's the role of the cilia (tiny hairs) to move the mucus, against gravity, up the sinus cavity to the opening to release the mucus.

In CF patients, our cilia are paralized in our sinuses (just like in our lungs) so it is extremely difficult for mucus to be removed from the sinuses. Just like in our lungs, what happens when mucus is left to sit? Infection time. And it's difficult to get rid of the sinus infection because unlike lung infections, it's difficult to get the antibiotic to the site of the infection. Antiobitc sinus tissue penetration is much more difficult than lunch tissue penetration.

One method in sinus surgery is to drill holes lower down in the sinuses to allow for easier draining. This allows mucus to leave the sinuses more readily, and infection possibly is drastically reduced. While the doc is in there, he/she can remove polyps as well.

Your poor daughter will feel much better if mucus is allowed to drain from her sinuses, which it sounds like isn't happening right now. Plus, sinus infection will be less, which will lower the possibility that her sinuses fluids are dripping to her lungs causing lung problems.

I think it's a no-brainer. Let the poor girl get some relief and get sinus siurgery!
 

JazzysMom

New member
My doctor once told me that CF polyps are like hemoroids. Once they are removed there is a likely chance they will return. The ??? is like so much of CF is when. It definitely is a personal choice, but much is based on if there is no other alternatives. If sprays etc dont help & she is in pain then you dont have a choice!
 

Mockingbird

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cutiepatootie</b></i>

I have a polyp and I have been getting really bad headaches for about 3 years now. My doctor advised me against getting the surgery, he said if I can deal with the headaches don't do the surgery because they say its one of the most pain full surgeries you can ever have.</end quote></div>

<b>Who is your doctor?!?</b>

If I'm right, Gabapentin is a mood medication and is only being used to treat the pain, not your sinuses. If your polyps are not treated (whether by surgery or other means), the pain will only continue to get worse, causing you to need more and more pain medication. Also, if there is pressure on the eyes, polyps can cause blindness.

Please get a second opinion as soon as possible. Also, if that doctor is part of a CF clinic, please tell us which one it is.

As for the surgery, I've had it my share of times, and it really isn't all that painful. Even if it is, they give you vicadin (Which I never took, because it wasn't painful for me).
 

sarabeth87

New member
i had sinus surgery done the Dec 29th, 2005. i felt great for the first few months afterwards (not the few days afterwards LOL) but now my sinuses are back to where they were b4 the surgery. i have bad sinus headaches and i cant smell anything, but i guess it may be different for everyone.
 

kybert

New member
ooooooook lets clear a few things up here

1. having sinus surgery does NOT cause you to have more surgeries. the underlying disease/condition does.
2. the surgery is not the most painful surgery in the world. in fact, i hardly have any pain at all after a day. and thats without any drugs apart from the ones given when you are admitted for the day.
3. cutting off polyps does not cause more polyps. same as number 1. cf causes polyps. if you dont cut them out you will end up with a polyp infested deformed nose.
3. if your daughter needs it DO IT. dont put it off to the point where she cant breate through her nose or taste anything, where she is constant pain 24/7, having multiple lung infections from infected sinuses and a heat pack permanently attatched to her face. when your sinuses get REALLY bad it takes over your life.

oh, and for the people who have had sinus surgery and all the healing is finished, make sure you keep doing nasal <b>washes</b> everyday. in other words flushing each nostril with <b>at least</b> 100 mls each. stopping the aftercare or having a little spray here and there will do absolutely nothing and will ruin all the pain you went through having surgery. this is where alot of people go wrong.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kybert</b></i>

ooooooook lets clear a few things up here



1. having sinus surgery does NOT cause you to have more surgeries. the underlying disease/condition does.

2. the surgery is not the most painful surgery in the world. in fact, i hardly have any pain at all after a day. and thats without any drugs apart from the ones given when you are admitted for the day.

3. cutting off polyps does not cause more polyps. same as number 1. cf causes polyps. if you dont cut them out you will end up with a polyp infested deformed nose.

3. if your daughter needs it DO IT. dont put it off to the point where she cant breate through her nose or taste anything, where she is constant pain 24/7, having multiple lung infections from infected sinuses and a heat pack permanently attatched to her face. when your sinuses get REALLY bad it takes over your life.



oh, and for the people who have had sinus surgery and all the healing is finished, make sure you keep doing nasal <b>washes</b> everyday. in other words flushing each nostril with <b>at least</b> 100 mls each. stopping the aftercare or having a little spray here and there will do absolutely nothing and will ruin all the pain you went through having surgery. this is where alot of people go wrong.</end quote></div>


AMEN.
 
L

littlemisssilly

Guest
Ok this is a topic I just couldn't refrain from..... I only had my sinuses operated on last week!! So, I'm still recovering, but each day is an improvement and so far, so good. In fact, I haven't been able to breathe through my nose (without overdosing on Nasonex, I mean literally overdosing over the course of a day) in such a long time that I cannot remember!

Six or so years ago, I had a CT scan done and it showed major blockages of my sinuses and a deformed septum due to years of chronic sinusitis although at this time I still have little symptoms, so I began with steroid sprays and evetually began Nasonex which provided relief for a while. Progressively over the last couple of years, my sinuses gave me more pain and distress on a daily basis than the CF. I would have headaches, horrendous post nasal drip, it affected my sleep and the pain at times actually made me cry. No matter how many times I would do saline flushes ect, it would never clear out the mucous build up.

As for the surgery, it all depends on the surgeon and like kylie said compliance with post operative care. I was lucky to have a great ENT surgeon who sees many CF patients. The pain was uncomfortable the day after the surgery, but nothing that two panadols could not fix. I only hope that my sinuses just stay this way, I'm in heaven at the moment and I haven't even healed yet!

Surgery is a major decision I agree. Only advice I can give is maybe try steroidal sprays first and if you can, go see an experienced ENT suregon (with your CT scans) who has a good understanding of CF sinuses because my understanding is that the surgical procedure is more dramatic with CF sinuses becasue the underlying cause (CF) will never be cured.

Life is just awful when you have severe sinuses and I'm not sure if your daughter is old enough to tell you if she has post nasal drip or not. Also, does she complain of headaches more after being outside? or running around? because for me, the wind and any physical activity would cause me major sinus headaches that would only be alieviated with meds.

Hope I haven't scared you, I'm extremely happy with my surgery eventhough it's still early days. The best place to start would be see an ENT specialist that sees many CF patients, maybe ask the your daughter's clinic for a recommendation. Good Luck!
 

anonymous

New member
Kaitsmom

My 5 year old with cf had sinus nose/ polyup surgery at 4 yrs old. Actually in December 2005 and then another clean-out in Jan 2006. He had a very nasty case with tons of nose polyups. The 1 hour long surgery actually took 4.5 hours. I at first was very against it. The ENT Doctor suggested that it really needed to be done. CT Scans showed it really needed to be done as well. He did tell us up front he may need more surgeries and it will take him a good 6 months to recover. Here we are 5 months later, still doing morning and nightly nose rinses and morning and night steriod sprays. BUT I do have to say with all he went through, I am GLAD he got it done. He has not been sick since- which is a real blessing and he CAN BREATH! When he came out of surgery his nostrils were moving, we hadn't seen that forever. Even though it is very scary it is worth it and if your doctors are telling you it is needed I would do it. Pain wise- he had NONE. Just make sure you find a good ENT surgeon.

Good luck with your decision. I know it is so hard being the parent of a child with cf and wanting to do the right thing! I have asked my son and he at 5 says he is glad he had it done as he puts his soup up to his nose to smell it (ha) He also could not smell any food, which now his appetitie is also up.


Fourkidsmom
 
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