alternatives to sinus surgery

[CowTown]

Got it. Definitely if it's not necessary, then it's probably not
something any one would want to do. But when you find yourself in a
needy situation, then I believe in going for it. I always feel
better when I hear that the surgeon has done "this kind of
surgery a million times before" to be very calming for me.<br>
<br>
Tangent Warning:::::::<br>
Okay, I'm going to bring up another TV show here, but did anyone
see the last episode of ER? I love that show, but anyways, and this
little tangent goes *way* beyond a sinus surgery but I feel like
babbling.......A lady had a huge size anneurism in her brain and
the doctors really wanted to help her and try to reroute the
arteries, ect. She was completely against it b/c she just wanted to
continue life with her husband and go to Paris together. The thing
was that she could have died at any moment without the surgery. The
surgery itself was a 50/50 chance at survival, but if it was
successful then she would have been 100% clear of any future
problems. It was like a cure for her and the doctor's final point
to her was for her "not to settle". He wanted her to
fight and not settle for the mere 2 weeks she probably had
left. This was what made her change her mind, and she went through
with the surgery. It was successful and I guess they lived happily
ever after.<br>
<br>
I suppose this touched home to me b/c my dad had a brain anneurism
about 6 years ago and he had to choose whether to go with the
seriously risky procedure to hopefully never have to deal with
anneurism concerns again, or go with a band-aid type surgery where
he would have had potential future problems and more surgeries. He
chose to go with the seriously high risky procedure which most
doctors didn't even agree to do it b/c it was so risky. It all went
as smooth as could have been expected, he's fully recovered now and
has never had any repercussions from the anneurism. It all worked
out super for him.<br>
<br>
I'm very interested in medical procedures, fascinated and quite
curious. That's why I love ER. I've been gathering a bunch
of information from Risa on lung transplants as a way to
prepare myself for when that day might come. I recently realized
how terrified I am of the doctor telling me it's time. Now that
I've asked Risa a bunch of questions and have heard a lot of
different results and possibly what to expect, I'm feeling a little
more comfortable with the whole idea.<br>
<br>
Anyways, I just think these things are fascinating and it's a good
thing to try and get past fears. As much as possible that is.
 <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Faust]

Some day we will all have microscopic nano bots roaming through our bodies killing off all invaders and repairing damaged tissue. But we will have to pay a large monthly subscription fee for it because the drug companies will lose tons of cash on treating just our symptoms.

 

[Faust]

@Newfy: When i say it was "completely unnecessary", I don't mean it was that way at the time to make the decision, I mean it's that way now. She presented a pretty grim future for me, and that surgery was the only option. Thankfully she wanted to wait till I got sick again before going through with it. That gave me enough time to look into other avenues and try things. NOW it is considered unnecessary. CF sinuses are a warzone, whatever we can use to stave off mandatory surgery till as long as possible is a great thing to me, because once you go down that road, you are reliant upon recurring surgeries. Screw that.

 

[EnergyGal]

I'm very interested in medical procedures, fascinated and quite curious. That's why I love ER. I've been gathering a bunch of information from Risa on lung transplants as a way to prepare myself for when that day might come. I recently realized how terrified I am of the doctor telling me it's time. Now that I've asked Risa a bunch of questions and have heard a lot of different results and possibly what to expect, I'm feeling a little more comfortable with the whole idea.~Kelly's Quote


Thank you Kelly for one of the biggest compliments I have ever received. I am so glad that you are more comfortable with your future. I had a doctor tell me when I was seventeen, "What are you going to do to prepare for your Future" That sentence still resonates wit me as you can see.

Life is all about living inthe present but it is great to know what you can do to prevent any unnecessary obstacles. Knowledge is Power

Be well,

 

[anonymous]

Hey Kylie,
I'm from the east, from New South Wales in fact. I'm glad to know it's not just me that smells rotten garbage through my sinuses! I used to walk around accusing all those around me that they had no sense of smell...... then I soon figured out that in fact, I was the one with the problem!

LB
29 fm/cf
Australia

 

[kybert]

lol lb! i used to ask people if they could smell something bad too. im from perth by the way.

 

[Scarlett81]

I'm getting sinus surgery probably int the next month or two. Depends on how long they think I can put it off. But in a way I can't wait. I hope I see a new me after it, or a better me. I can't wait till I can breathe through my nose again!

 

[PeterC]

Hello Tracy!

My name is Peter and I am 57 years old and have CF, diagnosed at age 8. I may be able to shed some light on your situation since my primary problems over the years can be directly connected to my frequancy of sinus infections.

I too was recommended to have sinus surgery years ago. I have had many surgeries over the years most of which took place as a child, but I also had one very serious one as an adult 20 years ago. I will talk more about what I went through and learned later.

First, sinus problems can be caused and exacerbated by many things. In my 57 years I have learned that just a change in my diet can have a profound effect and improve sinus problems significantly. My own personal experience has demonstrated that consumption of baked goods is one of the prime causes of my sinus congestion and is also the cause of that ever present smell.

I found this out almost by accident. While I was working for a company located a few blocks away from a coffee shop / bakery, I would stop religiuosly each morning to pick up a couple of muffins and a coffee for breakfast. The smell associated with sinus infections was overwhelming at this time. Anyway, I decided to try and give up the morning muffin stop in favor of saving some money and got my coffee at work instead. Within a few short weeks the nasty smell was gone. I returned to the coffee muffin thing a few months later and the smell was back as strong as ever. I finally gave them up altogether and drastically reduced my consumption of baked goods. I had read about the possible problems you can have when consuming flour products and baked goods years before.

Eliminating baked goods may get rid of the smell but it may not address the chronic infections. Another thing I discovered was that I was allergic to dust mites. Most people are allergic to them and they can cause major problems for people with lung and sinus disease.

How to deal with dust mites is to first monitor humidity levels in your home. A simple guage can be purchased at your local hardware store to monitor the humidity. Dust mites thrive in warm conditions with humidity levels above 60%. They live and thrive in areas that are frequented by people and wherever fabric or rugs are found. A mattress, if it is old, can be heavily contaminated with the little buggers. That goes the same for any fabric covered furniture and rugs.

What you can do to drastically reduce and or eliminate the dust mite problem is to cover your mattress with a dust mite zippered cover if you can't afford a new mattress. Do the same with your pillows. There are very good sprays that can be applied to fabric surfaces that will kill dust mites. It is a good idea to purchase a quality vacuum cleaner with a hepa filter if you have rugs. These products can all be purchased in your local area if there is a good sized shopping mall nearby and you can buy them over the internet for much less money. There are several web sites dedicated to allergy sufferers that also offer the products. Just do a Google search.

To reduce the humidity level, buy a good quality dehumidifier and use it all the time. There are several good ones on the market for a few hundred dollars. If you can't afford one that can take care of your whole house buy one that will at least handle your beadroom or whatever room you spend most of your time in.
I have also purchased a high quality room air filter that cleans the bedroom air frequently.

I've found that doing all of the above has greatly improved the condition of my sinus problems. I definitely get a better nights sleep as a result. Don't forget to change and or clean the various filters on the devices you purchase as recommended.

As for my last surgery, I was given an antibiotic while in surgery that caused me to loose a significant part of my hearing and left me with constant ringing in my ears. I was not told about the possible side effects of the drug. The ringing started as soon as they pulled out the IV line and I have been putting up with it for 20 years now.

I am a big believer in taking a proactive roll in my health care. I would never opt for surgery now unless it was absolutely necessary. The reason for this is because Hospitals have become very dangerous places for people with compromised immune systems to be. The latest stitistics state that two out of every five people hospitalized today pick up an infection while in the hospital. The source of this info is the recent book written by Doctors titled "You the Patient" a patients handbook. NPRs Talk of The Nation had one of the authors on the show yesterday. The most contaminated item found in the typical hospital room is the TV remote believe it or not. They don't bother to sterilize them. I am sure you can understand why.

Hospitals can be dangerous places for even the healthiest person! Most Hospitals in the US have cut way back on the amount and frequancy of disinfectant cleaning that is done in order to save money. The standard for disinfectant solutions left on surfaces before removal use to be fifteen minutes, the average time now is five minutes, not enough according to leading experts, to kill the most persistant bugs. This does no even address the wide spread problem of surgical room as well as surgical tool contamination. If you look on line you will find many articles and stories done about these problems.

I test positive for three varieties of staph in my lungs and have never been able to totally clear up my sinus problems. Over the years especially while in my twenties, I had surgery to remove nasal polyps and was often treated with antibiotics to try and remove the persistant bugs until my late twenties. Nothing has worked to elliminate the problems completely.

I have found that adjusting my diet, limiting my exposure to infection by using Purel hand cleaner frequantly, and doing all the things listed above have created a much more desirable situation.

My latest thing is to use the much discussed Oregano P73 Oil by putting three drops under my tongue two times a day and applying it to my face well below my eyes and along my nose, which I do at night or during the day if I am at home. This seems to greatly reduce stuffiness and also seems to be reducing my latest crop of polyps and making the bulges get smaller.

Recently I was given a three week course of Levaquin to try and knock out the bugs as a result of a recent visit to an ENT Doc. It seemed to work for a few weeks but the usual stuffiness soon returned. The Oregano Oil has had an immediate effect and I can now breath freely through my nose once more!

If you are thinking about using the oil I would do some research first and possibly purchase Dr. Cass Ingrams books on the subject.

I hope some of this helps!!!
Sincerely:
PeterC

email campanale@spire.com if you have any questions

 

[EnergyGal]

Hi Peter

Your story is very interesting and you have great insight into your health. I think it is a possibility that the bakers bread muffins contain a lot of yeast and yeast can thrive in the sinuses as well as the lungs. I know many people with cf who have a fungal infection or fungal ball in their lungs but they still continue to eat sugary foods. Sugary foods and wheat thrive on yeast. Do you think you had a yeast problem? Just curious

 

[PeterC]

Risa:

I have been following your story for years and it is nice to finally be in communication with you! You have a lot of experience to draw on and I am sure you have been helpful to more than a few people with your insights!

As to whether I had a yeast infection? I don't know for sure! It is difficult at times to keep track of all the things that go on especially if you are working full time, which I was at the time.

I will admit that I have adictions to baked goods and sugar but do a reasonably good job of staying away from them. Will indulge once and a while. Bought a small loaf of home made Italian bread a few days ago. I am enjoying it, very delicious, but my sinuses are definately more active than usual and the same old stinky sinus smell seems to be returning. I could be imagining it. Thinking about throwing the last of it away. Was taught not to waste food. Addictions can be difficult if not impossible to get rid of.

Keeping on top of and in charge of our health care can be difficult but it has been one of the most rewarding things I have ever engaged in. It can't be left up to someone else.! You have done a good job for yourself and I am glad you persist!!

Sincerely:

PeterC
57 m/cf

 

[EnergyGal]

Hi Peter

I just read what you wrote to Tracy and low and behold you answered my post. Sorry i did not see it. So now I know who you are after you have been following me lol. Nice to meet you. I must say you must be doing an awesome job with your cf. Congrats

I think yeast is what causes some of the problems for us. You can have a culture to determine this if you are interested but since the baked breads give you the smell and when you eliminate it then it is probably that. too coincidental I say.

I love muscle testing because you learn what your body needs at a given time. IF you test weak to the baked breads it will be easier for you to deal with the guilt if I eat this,,,,

that is great you are posting on this site. Nice knowing you

 

[fr3ak]

thanks to everyone who replied to this thread!!!<br>
<br>
I went to clinic today and spoke with both my tx drs and then my CF
drs and my CF dr is going to talk to my tx drs about using
hypertonic saline (be up to the tx drs to give me the all clear)
possibly using azithromycin which was discovered by the ENT drs
long before it became useful for ppl with CF.....<br>
<br>
my other choices are using inhaled tobramycin alternate months to
try and keep the infections to a minimum.....<br>
<br>
My other suggestion was a procedure they are using in Melbourne
called ballon sinuplasty, which is where they use a balloon thingy
to open up the passages and then use a stint to keep the passages
open, I will hopefully find out the cost etc of this procedure
 and then hopefully get that done if possible!<br>
<br>
I will keep ya posted on any other advances I find out....
hopefully I get something happening!<br>
<br>
thanks again<br>
<br>
Tracy<br>
<br>

 

[EnergyGal]

Hi Tracy

When you mention using hypertonic saline, do you mean inhaling this or using a saline to irrigate your sinuses? The reason why I am saying this was, two years ago, I bought a hypertonic saline mixture that was made for irrigation and put this up my nose and it really irritated my lungs. It could have been coincidental but I believe there was something to this and once I stopped I felt better. When I told my doctor she said I should never have this this as hypertonic saline is very irritating to the lungs. I am talking transplant lungs. When I irrigate, I am sniffing in whatever mixture I was using. Particles travel down into the lungs. Today, I use just nine percent sterile saline for irrigation purposes only.

When this happened two years ago,she said after the bronch that my tx lungs looked very irritated. She thought it was hypertonic that helped to irritate them. I would try and not use hypertonic saline for your lungs just based on my experience.

How about doing some chest Physio daily for ten minutes? Even if your lungs sound clear it cannot hurt. There is always the chance that the mucus from your sinuses can travel down and by doing CPT, this will help prevent lung infections.

Huff coughing is good too.

I wish you the best with your sinuses. I know this has been a long time issue for you

Risa

 

[anonymous]

As a last resort, Kyra had Endoscopic Sinus Surgery and Lavage (ESSAL) last summer, at age 9. They removed polyps which were completely filling up her sinuses, trapping infection, and destroying bone.

She said it wasn't so bad, and doesn't care that she'll have to do it again someday. The worst part was the pain (bad headache) for the 1st day, and part of the 2nd one. She said the Tylenol w/codiene made it better, and only used it for 2 1/2 days.

The best part was 2 weeks later, when we went to the grocery store. She asked me what the wonderful smell was, and we realized that she had never smelled rotisserie chicken (or most food) before!!!

Since the surgery, she has had less lung and sinus infections, and (of course) less rounds of antibiotics. I believe this is due to her AWESOME adherence to the sinus irrigations 2xs/day.

Kay Walker
mom of Kyra (10 wcf)
and RN student

 

[JazzysMom]

Speaking of smelling the food.....a thought just popped into my head. For those of you that have had sinus surgery & can smell now, did it make a difference with your appetite. I just know that if something smells really good to me I cant wait to dive into it. On the other hand if something smells nasty I wish I didnt have my sense of smell. I was just curious since Kay's daughter discovered the wonderful smells!

 

[RNstudent]

Kyra has always had a ravenous appetite, which has been a blessing.
 However, since her surgery, she now chooses food based on
it's smell.  Unfortunately she's getting pickier because of
this.  Before the surgery, she ate anything...  <img src="i/expressions/face-icon-small-sad.gif" border="0"><br>
<br>
Kay Walker<br>
mom of Kyra (10 w/cf)<br>

 

[fr3ak]

HI Risa,<br>
<br>
yes the hypertonic saline I am talking about is for inhalation
(delivered via the nose by a nasal attachment as apposed to a mouth
piece)<br>
<br>
Thankyou for making me aware of the trouble you had with using
hypertonic saline and your new lungs... I dont know what the
outcome will be or if I will be using it or not.....Its just an
option that my CF drs are proposing for my tx drs..... I cant do
sinus irrigation because theres just no real opening to wash
anything out, its all too icky up there.....<br>
<br>
I suppose one advantage is I wouldnt really have post nasal drip as
its too thick to drip! LOL<br>
<br>
I know in the US they are using Pulmozyme to help break down the
mucus in CF sinuses, but because I am no longer classed CF I am not
eligable for it (health systems gone to the dogs)<br>
<br>
maybe the inhaled tobra will help, maybe I can try the
azithromycin, not sure, but Hopefully I will eventually find
something that works apart from surgery!!<br>
<br>
thanks again<br>
<br>
Tracy

 

[anonymous]

I think surgery would definitely help you only if you can have it there.

I spoke to the Doctor who invented Pulmozyme ten years ago (Dr.Steven Shak) he said he DOes not recommend pulmozyme for transplant patients. He felt that it would thin out the mucus so much that it would drip into the lungs. That was his theory ten years ago and I do not know if they have tried using pulmozyme in tx patients since then.

Sounds like your health would improve a lot with surgery or if you can find away to get out the mucus. Try this,

take a tissue and blow your nose this way. Pull one cheek back and exhale through that side of the cheek (exhaling through your nostril). IT is kind of an awkward way to blow out but you are opening up the osteum that way. See if it helps.

Tobi and all antibitics help to keep the bacterial load down but when you get surgery it helps to lighten up the traffic jam of mucus build up.

I had one surgery ten years ago and never needed another one. I keep my sinuses clean each day. I also drain face down on a massage table ever other day or sometimes daily for one hour. I like to irrigate with normal saline for irrigation only and it helps.

I hope u get the needed relief

Risa

 

[Faust]

BTW For those of you nebbing the OO, make sure to breath out through your nose every time, so your sinus area gets the benefit of it as well.

 

[anonymous]

Great point Sean. I did this when using tobi.