alternatives to sinus surgery

[anonymous]

I thought I would throw this question into this forum as well as a couple of others.

anyway my question is in regard to chronic sinus infections and alternatives to surgery.

I was suppose to have sinus surgery today but once again it was cancelled (for the 3rd time)

I am post dl tx 3 years 3 months out, and since tx my sinuses have decided to have a party at my expense.

I have continally coughed since my tx and my reflux has been checked and ruled out, a loose stable from the tx has been checked and ruled out, the next thing to rule out was my sinuses. well I know I have crap sinuses, and have continious infections, as soon as oral ABs are stopped my sinuses are back to being disgusting.

I have tried the saline irrigation but according to my CT scan my sinuses are so bad that there is no space for the saline to flush (things are so blocked up)......

I have been told that the only thing left is surgery, which Ive explained has been cancelled all up 5 times if you count rescheduling... so Im open to any alternatives that may be out there. as I have now flatly refused to have the surgery

I have emailed my CF dr and asked him about using a Humidifier (I used one pre tx and helped my chest)
Ive also asked about hypertonic saline (I couldnt do it pre tx, but now I have good lungs maybe its an option)

anyway, Im all outta ideas, and I dont partically want my sinus problems to lead to the downfall of my lungs....

any ideas or treatments would be greatly appreciated!


Tracy

31 cf/post dl tx

I made a user name and was logged in but every time I tried to post a msg the computer froze. I didnt log in and it work.....bizarre

 

[kybert]

if saline washes and anti biotics dont work then im afraid there is no other option apart from surgery. nothing else will make your permanantly inflamed sinus passages open up again. <img src="i/expressions/face-icon-small-sad.gif" border="0"> but you doctor is right, once you have the surgery the saline washes will be able to do their work properly and this will help prevent or at least minimize future surgeries. i know its a pain in the butt to have it done but its worth it.

 

[EnergyGal]

Are you the Tracy that use to visit TransplantBuddies and are you from Austraila?

I had sinus surgery and it was the best thing I did. I had this a few months after my first transplant. I never had to have surgery again. They made a window I believe and if there is any mucus it drains out. I irrigate my sinuses with normal saline which is sterile of course. I get this at the pharmacy. Taking flonase at times helps if i need it. I also drain on a massage table as part of my relaxation too. My head lays facing downward in the head rest and if there is any stuff it comes out.

I would not recommend inhaling hypertonic because that will irritate your lungs. Be careful with anything you do.

 

[anonymous]

thanks Kylie and Risa for your input!

Yes risa I am the same Tracy that was on the transplantbuddies board, I have forgotten my password again which is why there isnt any posts from me on there LOL....

I have made an appointment with my CF doctors for the 20th march, so hopefully they have some ideas I can use.

I have decided to NOT have the surgery now, its too much stress going through the lead up only to get told to go home. And I cant stand the fact that the transplant drs think its acceptable for you to have a sterile shower and then get in a filthy taxi to have your operation, then stay the night and catch another filthy taxi back to my hospital, its ludicrous to think you are still sterile and not open for infection!

I have called them on this twice now, but they still insist on the whole taxi protocol.......(not with this little black duck they dont)

I walked out of the hospital back in november after waiting for 15 hours on a trolley with no fluids, Ive been in complete kidney failure 3 times I wasnt about to go for the 4th! (I dont care if Im labelled as " one of them patients", Ive had my health suffer from bad decisions on drs parts, Im not about to have it happen again)

Hopefully my CF drs have some answers, I know the tx drs sure dont give a damn what happens to you here......

Tracy

 

[NoExcuses]

.

 

[Faust]

I refused to get sinus surgery after my last visit. She said mine were pretty bad off. I told her I will find other ways. I still occasionally get a runny nose in the morning, but that could be due to my alergies. I'd say i've had a 90%+ reduction in nasal problems. No surgery for my a*s!

 

[fr3ak]

SeanDavis<br>
<br>
what did you do to reduce your sinus probs by 90%<br>
Im with you, I refuse the surgery now, just need something to help
keep the infections at bay?<br>
<br>
I dont have a runny nose, just constant infection, But I have to
admit Im pretty good at regurgitating my crap back up once I
snuffle it back to prevent it from entering my lungs.....<br>
<br>
Thanks for your input<br>
<br>
Tracy<br>
<br>

 

[anonymous]

Hi Everyone,

This is my first time posting but I've been visiting this site for over a year now, so I certainly feel like I know you all quite well. So, Hello!!

Quetsion for Tracey, I'm from Australia and also waiting for sinus surgery, which city are you from? I'm assuming it's somewhere on the east beacause you've had a transplant. I'm curious which health service we're talking about

LB
29 fm/cf
Australia

 

[fr3ak]

Hi LB,<br>
<br>
I'm In brisbane QLD, I think a lot of it has to do with the DR none
of this ever happened when I was just CF, seems since I became a
transplantee my health care has gone down the toilet......(if it
wasnt for me taking charge of my own health care I believe I would
have been dead long before this!!)<br>
<br>
not just with this incidence but with a lot of incidences that have
occurred in the past 3 years......<br>
<br>
I have no confidence in my tx drs, and everyone including my CF
doctor knows this, and when you dont trust your drs then you cant
completely trust their decisions (which have been wrong sooo many
times before)<br>
<br>
Tracy<br>
31f/cf/post dl tx 2003<br>
<br>

 

[anonymous]

Tracy,

I can completely understand about having to be proactive and 'take charge' of your own health.

I too worry about how my surgery will turn out (it will be my first), but having read the many 'sinus success stories' on this site, I feel a little better. Also, like some of the other posts have said, I really don't have any other options, it's surgery or keep on putting up with the pain and endless anti-biotics to keep them under control...... plus, it would be nice not to have to the smell bacterial stench that has made a home for itself over the years! Good luck with your sinuses!

LB
29 fm/cf
Australia

 

[kybert]

<div class="FTQUOTE"><begin quote>plus, it would be nice not to have to the smell bacterial stench that has made a home for itself over the years!</end quote></div>

that smell is so disgusting. it reminds me of the smell of old dried slobber from other dogs on my dogs coat mixed with poo. rotting carcasses. <img src="i/expressions/face-icon-small-shocked.gif" border="0"> are you from the east or west coast lb?

 

[NoExcuses]

.

 

[NoExcuses]

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

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



I am going to go about this through an anatomy standpoint.







We have sinuses - basic cavities in our head that are hollow so that our heads down weight too much and we can hold our heads upright. The frontal sinuses are the usualy culprits for sinus infections.







There are openings in our frontal sinuses - at the very top towards our nose. Each frontal sinus is lined with cilia - little hair like structures that are contactly beating to move naturally occuring mucus out of our sinus cavities. Cilia also occure in our airways.





Amy, and anyone else that has HOLES drilled. I am not familiar with that. Can you elaborate.



This post is sooooo timely. Its always so interesting when that happens. Troy has been feeling really really bad the last few days. Couldnt catch his breath at all and kept turning the oxygen up and his sats werent changing, then he decided maybe his sinuses were clogged and thats why O2 wasnt helping.

Sure enough, he took a sudafed and he feels soooo much better. Its so hard with CF, he just gets used to feeling crappy and never knows what feels bad. Just that he feels bad. Make sense.



Anyways, we both think he needs sinus surgury for the 8th time but due to his chemo his risk is much higher. He might need to take a break for it from the chemo which opens his cancer up to growing. Its a crappy situation.



Any advise or help would be appreciated.



Thanks all





Because the mucus in CF patients is thick and tenacious, the cilia are often paralyzed and cannot beat properly - and in our sinuses, the mucus cannot be moved out of the cavitiy.







The sinuses have to fill to the top with mucus (because the opening is towards the top) in order to drain.







So what happens when this pool of mucus hangs out? Same thing that happens in our lungs- bacteria grow.







Sinus surgery can involve one of many procedures. The first, is to drain the mucus from your frontal sinuses. Temporary fix, of course, but it can help.







The second of course, is to drill holes lower down in your frontal sinus cavities so that the mucus doesn't have to accumulate to such a large degree to drain. If the mucus can drain more frequently, there is a smaller change of infection.







Sinus rinses, nasal corticosteroids and the like can help with mild and infrequenty sinusitis. But with CF patients, these treatments simply can't hold a candle to drilling holes.







Frustrating news, but this is simply the case.







And if you put off getting sinus surgery when a physician deems that you need it, you could be jeopardizing your lungs. Infections in your sinuses easily drip down into your lungs.







Fixing your sinus issues can give you lungs a better chance at avoiding infection and subsequent lung damange.







Get the surgery - there's just no other way to fix the problem.</end quote></div></end quote></div>


i don't have holes drilled, just to clarify. i don't have sinus surgery. but i spend day in and day out talking to ENT's in Southern California so I am quite educated on the surgery.

 

[Faust]

I used to have problems with my sinuses draining into my lungs, regardless if it was in the morning or while I was asleep. Last checkup with the ENT she said my sinuses were horrible (that was after my last hospitalization). Thankfully I only occasionally have a runny nose after I wake up and go to the bathroom. I had allergy tests done, and my strongest allergy is Oak tree. Normally this time of year I would have to have tampons or toilet paper literally shoved up my nose to stop my nose from running while I suck the snot down through my sinuses and into my mouth and spit it out. Thankfully I'm not like that anymore. Apparently the other guy that had real bad sinuses problems that posted in that flame thread (forget his name now) also had immediate relief of his chronic sinus problems. If you need surgery and don't know of any other ways or don't want to try any other ways due to not being sure, get surgery. Many people have had it, and i'm sure many have reported good results. Not me though. It might be an inevitable thing for me to have surgery, but at the least I have bought myself much more time.

 

[Faust]

BTW I forgot to add this: When I do my vest treatment with my aresol mixture (I do my vest about 2 or 3 times a week, that every day thing is hard to commit to for me), I breath my mixture out of my nose, and between the vest and what i'm inhaling and exhaling, I blow a good deal out into tissues and feel amazing afterwards.

 

[anonymous]

Amy, and anyone else that has HOLES drilled. I am not familiar with that. Can you elaborate.

This post is sooooo timely. Its always so interesting when that happens. Troy has been feeling really really bad the last few days. Couldnt catch his breath at all and kept turning the oxygen up and his sats werent changing, then he decided maybe his sinuses were clogged and thats why O2 wasnt helping.
Sure enough, he took a sudafed and he feels soooo much better. Its so hard with CF, he just gets used to feeling crappy and never knows what feels bad. Just that he feels bad. Make sense.

Anyways, we both think he needs sinus surgury for the 8th time but due to his chemo his risk is much higher. He might need to take a break for it from the chemo which opens his cancer up to growing. Its a crappy situation.

Any advise or help would be appreciated.

Thanks all

*** I was trying to quote/reply to Amys post and somehow, my post ended up in the middle of the quote. Anyways, I think Amy got it, but doubt anyone else did. Thanks again for any help.

Karen ~ Wife to Troy with CF

 

[EnergyGal]

Hi Tracy

You can write to John at John@transplantbuddies.org give him your username and he will send you a password. You can also try to register yourself as we have open registration for the past month now. Let me know how it goes
txbuddies@yahoo.com

I am sorry you are not feeling well. I hope you get the needed care. I hope you can find a hospital that will help you

 

[Faust]

I think the "holes drilled" comment was refering to them quite littereally drilling holes between the sinus cavity and the lower mouth area so the sinuses get assistance in being able to drain in that way. Of course that is just a guess on my end, but it makes sense.

 

[CowTown]

I've had 3 sinus surgeries. The first was when I was 16 and had 1
hole drilled on one side of my sinuses. 2 or 3 years after
that I had my second surgery to drill the second hole on the other
side. I never had any complications with any of my surgeries.
The holes have helped a bunch, I suppose. For me, it's one of those
things where the doctors said I needed it done b/c they were so
filled up, so I did and I suppose it's helped. Last year, at age
31, they flushed my sinuses again and apparently after all those
years they became "nasty" again. Without the holes that
were made when I was 16, I would have most likely had way more
headaches than I'm used to, and possibly more problems. Once the
holes are drilled, they're little "windows" that stay
forever, but with CF mucus constantly building those windows
eventually can get filled back up with stuff. This was why I had to
get them drained last year so the holes were clear again.<br>
<br>
I have a question. Why are so many people so against surgeries? I
realize being put under isn't a good thing and there are risks to
any surgery, but some are so much less risky than others. Just
curious what the scare is.

 

[Faust]

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


I have a question. Why are so many people so against surgeries? I
realize being put under isn't a good thing and there are risks to
any surgery, but some are so much less risky than others. Just
curious what the scare is.</end quote></div>


For me it's because it turned out to be (so far) completely unnecessary. I took a gamble and it paid off. Not to mention my ENT told me that it wasn't just going to be one surgery, it was going to end up being several surgeries, like possibly an annual thing. While I fully understand the importance of surgeries (I have had a few for non CF related things) to humanity, I personally only do them if it is really needed, they are very superficial (like the cyst I had removed on my back), and can't be helped by any natural treatment means (many surgeries have been avoided in that way). I personally don't like to alter my body in any serious/permanent means like drilling holes in my sinus areas. I made it to 34 without the need for surgery, and when it raised it's head as an option, I did my own research into alternative treatments and it paid off.

Now 5+ years down the road? Who knows. If there is nothing that can help me naturally, then of course I would consider it. But that isn't the case now.