Sinus Surgery

[letsrockcfem]

I had my first sinus surgery when I was 13 years old. Since then I have had about 7 or 8..I have sinusitus and polyps. My last surgery was in December and I usually have it once a year. I held off for 3 years prior to the December "roto rooter." I have to say that I think the surgeries really help me. I always feel a ton better after and my lungs seem to do better as well.
Recovery with everyone is different. These days I have it in the morning and by early the next day I am ready to rock!! I get a few doses of pain meds and that takes care of everything. Its no big deal anymore.
I had 2 cat scans in November, 1 showed that my sinuses were starting to detereorate a little bit so they did another one. My frontal sinus wall looks like it is collapsing a little bit so my ENT shoved a stint in there. No biggie.
You should see the stuff that comes out of my sinuses, it's like burned broccoli. Serisouly and it smells so bad it is unbelievable. I am at that point now...this week has been out of control. I think its time to see my ENT guy again.

I am for the surgery, the results are sweet!
em

 

[treehugger]

I had very serious sinus problems for decades and erosion of bone. I finally found a good ENT and had the first surgery to fix a deviated septum and widen all drainage areas (6 hours of surgery). I did not have my frontal sinuses fixed so they kept getting infected and started the whole chain of infections all over again. Apparently it is common for cfers to have undeveloped frontal sinuses. Don't let anyone tell you differently-extensive sinus surgery has a painful recovery period. I then had a series of surgeries a few years later to open up my frontal sinuses that involved drilling bone. My sinuses are clear now and I irrigate them and use Nasonex. Sinus surgery can cause the need for more surgery if the subsequent scar tissue is enough to impede drainage. My ENT was aggressive and scraped it out for a few weeks afterwards and put me on prednisone. Not pleasant but necessary. I would definately do it again. Lisa

 

[point]

Kaitsmom -- My CF center is not surgery happy and actually suggested the use of a sinus lavage using saline. I have an attachment that I received from the ENT doctor and it hooks up into a family size water pik. I then make a saline solution with regular water and salt and "wash" my sinuses. I regularly have mucus, etc removed by going through the nostril opening that doesn't have the water shooting into it. It sounds very unpleasant, but really is not that bad. You may want to ask about this first prior to surgery to see if it can clear anything. Also, you can look online or any local health store and try a netty (spelling?) pot. Same idea but I believe it is a one-time-use set-up. I did have sinus surgery at age 22 and do complete sinus lavage daily. I have had only an occasional sinus infection since my surgery. Prior to surgery I had horrible headaches, along with teeth pain. Hope this helps!

 

[chiefschick]

I am new to this site. I found out today that a very close cousin of mine tested postive for CF from a sweat test. She just turned 9. Our family can't beleive it. She scored a 107 on her test, and from what I've read 60 says you have it. She is having another sweat test tomorrow and her father is sort of in denial. He thinks it's a false positive but 107 seems awful high.

She is supposed to get surgery on her sinus's on the 18th and they found polyps (spell?) a couple days ago. The whole family ruled out CF because we were uneducated as to the symptoms and believing that sypmtoms start at birth. I remember the first movie about CF, it was called "Alex, the life of a child" and I'll never forget it.

I am wondering about the surgery and what to expect for her life expectancy. I am praying that she will live past 30 and perhaps there will be more medical break throughs by then also.

How do you explain to a child of 9 that she has a Chronic disease? We are all just in shock. Any advice or help would be greatly appreciated.

Thank you,

CC

 

[Emily65Roses]

CC,
I sent you a private message. Top lefthand side of the screen when you're signed in on your username (chiefschick). There will be a box right under your username that says "private messages" and it should have mine right under the private message label. Read it, feel free to reply. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Faust]

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

I am new to this site. I found out today that a very close cousin of mine tested postive for CF from a sweat test. She just turned 9. Our family can't beleive it. She scored a 107 on her test, and from what I've read 60 says you have it. She is having another sweat test tomorrow and her father is sort of in denial. He thinks it's a false positive but 107 seems awful high.



She is supposed to get surgery on her sinus's on the 18th and they found polyps (spell?) a couple days ago. The whole family ruled out CF because we were uneducated as to the symptoms and believing that sypmtoms start at birth. I remember the first movie about CF, it was called "Alex, the life of a child" and I'll never forget it.



I am wondering about the surgery and what to expect for her life expectancy. I am praying that she will live past 30 and perhaps there will be more medical break throughs by then also.



How do you explain to a child of 9 that she has a Chronic disease? We are all just in shock. Any advice or help would be greatly appreciated.



Thank you,



CC</end quote></div>



Very young people that are newly diagnosed (under the age of 10), have a very good chance of living for quite a long time, considering her mutations, how strong her family become firm advocates for her care, and how strong she abides by her care for the rest of her life. The more herself and her family commit to make her care their #1 priority and have a good outlook about her life and disease, the more likely she will live longer.

Aside from the above, the rest is a crap shoot, but I think that depends mostly on what mutations that she has. I was born in 1971, and at the age of 35 (just turned 35) I still have 99% lung function (as of last PFT). There are other CF's in their 20's, 30's, and even 40's with fairly good lung function left. Starting over at this point in technology wise towards CF, a child born not long ago could possibly live a normal life span considering what might be around the corner in the medication/advancement arena. Don't think of this as a total death sentence like your loved one just found out they have inoperable brain cancer. Look at it as a bad manageable health problem, that with proper care and education and strict adherance to proactive management, can be like diabetes down the road.

 

[anonymous]

Thanks to everyone that has responded. I am wondering if anyone has had worse lung fuction after sinus surgery and their health has declined? I am still real uncertain about all of this and am just trying to not be so stressed until after the CT.

Thanks again

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

 

[cutiepatootie]

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

<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).</end quote></div>

Hi Mockingbird,

I don't think my polyp is putting any pressure on my eyes, I just know I have one. I have had one since I was a child and it has never bothered me and I have never gotten a nose infections that I can remember.

I just have been having really bad headaches for the pasted 3 years, and my doctor just suggested that if it was my sinuses, and the headaches could be controlled that nose surgery was painful. Also when I said I was on Gabapentin it wasn't for my sinuses its for my headaches. As for my doctor he didn't even know if my sinuses were the cause of my headaches when he suggested it. I think he was just telling me what all his other patients have told him about the nose surgery, that it was painful. Where else is he going to get the information, unless he had one him self, that's all I can say about that topic.

One more thing I hope you don't think that he's a bad doctor for letting me go so long with my headaches, because that's not the case. I am new to the province and have only been seeing him for about 6 months and as soon as I told him about them he got right on it to try and help me with them. He is one of the best doctors I have ever been to. I think that if my polyp was really bad or infected, he would do what ever need to be done to make it better for me.

Any how I want to say thank you for your concerns, I just had a CT scan done of my sinuses and of my head recently. I will be sure to find out what the results are of them to make sure that everything checks out fine up there. If it is my polyp though I will make sure I get the proper care that I need for it. Thank you for letting me be aware of it, I might have thought nothing of it before you said something about how if there is pressure on the eyes from it, it can cause blindness. I have had the polyp for so long and my last doctor didn't say anything about it to me and I had seen him for about 13 years when I moved. I just wanted to let you know that the doctor I was seeing is a very good doctor. Thanks again, bye for now.

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