Home | Contact Us | FAQ | Search & Site Map | Link to Us
Sign In | Join | Other 45 Sites in Network
Home
Discussion Groups
General
GeneralCardiologyVisionDentistryPharmacyLaboratoryNutritionAlternative
Diseases and Disorders
AIDSAlzheimer'sArthritisAsthmaCancerBreast CancerDiabetesEpilepsyGlaucomaHepatitisHerpesLupusProstate BPHProstate CancerProstatitisSinusitisTinnitus

Medical Forum / Diseases and Disorders / Sinusitis / March 2005

Tip: Looking for answers? Try searching our database.

comments to chronic sinus sufferers

Thread view: 
Enable EMail Alerts  Start New Thread
Thread rating: 
kathywb2001@yahoo.com - 13 Mar 2005 08:17 GMT
I posted the following in a previous post, but wanted to post it again
for those who may not have seen it and keep having chronic problems.

PLEASE DEMAND (or request, most ENTS don't like demands) ENDOSCOPIC
CULTURES IF YOU KEEP HAVING SYMPTOMS AFTER BEING ON ANTIBITOICS FOR A
WHILE. (mucus that you blow out or cough up won't usually show what is
actually in the sinuses.)  DON'T JUST GO FROM ONE ANTIBIOTIC TO
ANOTHER.  I THINK THERE IS SOME DANGER IN HAVING THEM DONE SO THAT
PROBALBY SHOULD'NT BE A FIRST OPTION (SOME ONE CAN CORRECT ME IF I'M
WRONG).  EVEN IF THE ENTS SAY YOUR CT SCANS ARE CLEAR, ask for THE
CULTURE IF YOU HAVE TO PAY FOR IT YOURSELF, BUT MAKE SURE YOUR'VE BEEN
OFF OF ANTIBIOTICS FOR A WHILE. I'VE HAD 3 UNUSUAL "BUGS" CULTURED OUT
WITH SUPPOSEDLY NEGATIVE CT SCANS.  IF SOMEONE WOULD HAD DONE A CULTURE
YEARS AGO AND LISTENED TO ME INSTEAD OF TREATING (OR NOT) A CT SCAN,  I
MIGHT NOT BE IN THE SHAPE THAT I'M IN.    DON'T LET YOURSELF GET IN
THIS SHAPE.

(I now have a resistant bacterium and am on IV antibiotics and am not
sure it is going to help. I'm now up in the middle of the night with
drainage so bad that it about suffocates me. But when it doesn't drain
the pain and pressure are unbearable.)

BTW, I've been to Mayo as well as several other places and agree with
other posters that you need to find someone who specializes in
sinusitis.  From my experience most ENTs only want to do surgery and if
they don't see something that needs surgery, then you don't have a
problem.  Most infectious disease doctors don't want to deal with the
sinuses, period.  At least that has been my experience.
My experience with Mayo was both good and bad.  I was there twice.  The
first time an allergy doctor did the endoscopy and saw the purulent
drainage. He was the first to suggest chronic sinusitis.  I was on
antibitoics and didn't get better and went back and saw an ENT who just
looked at the CT scans and said I didn't have sinusitis. He didn't even
do the endoscopy.  He practically said I was lying about the first
doctor (who wasn't there the 2nd time.)  I had to show him on the
computer, the allergist's notes, and he still didn't believe me.  Like
Steven, I eventually had sinus surgery and had considerable ethmoid
disease.  But I didn't get better for long.  I even went to National
Jewish because I was coughing up brown stuff.  They did a more detailed
CT scan that showed "mild ethmoid chronic sinusitis" with reactive bone
formation. However, my enodscopic exam there looked normal, so it was
pretty much dismissed except for being told I needed to use Flonase.
I later got copies of the report that had an additional comment that
was not on the report that I first received that said this possibly
represented old osteomyelitis (bone infection) which is what I have now
been diagnosed with.
  One other point.  Most doctors order "limited" CT scans of the
sinuses that may miss something, so you may want to request detailed
scans.  Also, make a point of getting the records and reviewing them
yourself.  Educate yourself, but don't make the doctor(s) think you are
diagnosing yourself.  They don't like that either.  Just be informed
enough to ask good questions.
  You know when you are sick!!  It's a shame that we don't have many
doctors anymore who actually listen to a patient's symptoms and use
that as part (not all) of their diagnosis.

GOOD LUCK TO ALL!!

KATHYW
Dball63 - 13 Mar 2005 09:53 GMT
Kathy. I just wanted to say thank you for taking the time to post your
message here. Second, can you describe in detail about the ENDOSCOPIC
CULTURES you had. I've been trying to have this done and each time my
ent looks in my sinuses and says there is nothing to culture with a
swab. This always suprises me because on most days all I do is clear my
sinuses of this junk? It makes me wonder if the stuff that I am
clearing is coming from someplace in my sinuses that they are not
seeing with the camera or CT scans?

> I posted the following in a previous post, but wanted to post it again
> for those who may not have seen it and keep having chronic problems.
[quoted text clipped - 55 lines]
>
> KATHYW
kathywb2001@yahoo.com - 13 Mar 2005 22:50 GMT
They do the endoscopic cultures through the endoscope while they are
doing the exam.  They can get to the sinuses better than just sticking
a swab up your nose.  I've had that done numerous times and it never
grew anything except normal flora.  Getting one to do that is another
problem.  I would call and ask if they would do the cultures.  The last
ENT I saw reluctantly did cultures after I practically begged him.  The
culture grew Stenotrophmonas, which I have since learned is pathogenic
in the sinuses and is rarely found there and very resistant.  He had
never even heard of it and still insisted that everything was fine.
However, he did admit that it was hard to visualize some of the
sinuses. The drainage that I've had has almost strangled me at times,
but since I didn't have it at the time of the exam, he didn't believe
me  This sounds nasty, but you might want to take a baggie of the
mucus.  I have resorted to that a few times.    I don't know about the
cultures for anaerobic bacteria.   I don't even know if they can do
them.  I assume someone could.

 I had to go out of state to get help.  The doctor I saw took one look
at the cultures and put me on IV antibiotics.   I don't think you would
most likely have something like this especially if you haven't been on
a lot of antibiotics or are immunocomprimised.  I'm just relaying what
happened to me since I was never diagnosed and treated appropriately.
I was on about every oral antibitoic there was without much help. It
all started with an acute sinus infection over 20 years ago that I
don't think I ever completely got cleared up.
   You haven't mentioned whether you use the saline rinses or have
been on antibioics.  You might want to use these first.  I think that
most people will clear up on an antibiotic if taken appropriately and
possibly even with the saline rinses alone.  When these don't help,
then I think you definitely need the cultures.  

Kathy
Dball63 - 14 Mar 2005 17:47 GMT
> They do the endoscopic cultures through the endoscope while they are
> doing the exam.  They can get to the sinuses better than just sticking
[quoted text clipped - 12 lines]
> cultures for anaerobic bacteria.   I don't even know if they can do
> them.  I assume someone could.

I have thought about doing what I think you describe. Its seems that
most of the ENT's I've been to don't believe that I am having the
massive drainage problems that I tell them I have. They don't beleive
me when I tell them that I have to blow my nose 100 times a day. Would
that do any good to collect some drainage on my own to have samples???

>     You haven't mentioned whether you use the saline rinses or have
> been on antibioics.  You might want to use these first.  I think that
> most people will clear up on an antibiotic if taken appropriately and
> possibly even with the saline rinses alone.  When these don't help,
> then I think you definitely need the cultures.

I had a sinus infection about 5 years ago now. It mostly cleared with
my first round of anitbiotics (Not sure which one it was) I was left
with constant draining since then. I've been though everything else
since that time. ENT, Allergy, Acupuncture, etc. I have tried
irrigation with just about every type of method. It never seems to help
me and sometimes I think it made things worse! Recently I tried a long
course of oral antibiotics and I only noticed improvements with Avelox
for a few days. It strangely quit working for me though.

Thanks for your input!

David
Sacramento, CA
kathywb2001@yahoo.com - 14 Mar 2005 23:33 GMT
I don't think that the mucus would be suitable for culture.  I went
down that route
many times and it always showed normal flora.  However, showing the
junk to
the doctor might at least make him believe you.  If you do get someone
to obtain
cultures, make sure they do sensitivities.  If the infection doesn't
get completely cleared up, the bacteria will become resistant to the
antibitotic or more resistant forms will grow as in my case.

Your story sounds so similar to mine.  I got an acute sinus infection
many years ago,
ran a high fever, and even had vertigo.  I took an antibiotic and was
well for a while.
 Then I started running a low grade fever off and on for the next
several years that would
always go away when I took an antibiotic  only to return later.  Oral
antibiotics finally
quit working.  I'm  convinced that the first infection never got
completely cleared up.

In desperation I found an infectious disease doctor in Atlanta who
deals with chronic
sinusitis and has treated the bacterium I now have. I notice that you
live in California.  While doing research I found   the California
Sinus Institute that has recently been created there.  I'm not sure
where it is located.    Dr. Winston Vaughn  is working there.  I'm
not sure if he is the director, but he was formerly the director of the
Stanford Sinus Institute and has used nebulized antibiotics.  I'm not
sure what else he does, but it might be worth checking out.   The
number for the institute is    650 462  3131.  

Kathy
Steven L. - 13 Mar 2005 20:59 GMT
> I posted the following in a previous post, but wanted to post it again
> for those who may not have seen it and keep having chronic problems.
[quoted text clipped - 3 lines]
> WHILE. (mucus that you blow out or cough up won't usually show what is
> actually in the sinuses.)

My ENT says that his lab doesn't culture for most anaerobes, so that he
only cultures for aerobes.

And those aerobe cultures invariably turn up negative.

Signature

Steven D. Litvintchouk
Email:  sdlitvin@earthlinkNOSPAM.net

Remove the NOSPAM before replying to me.

Don Brady - 13 Mar 2005 22:20 GMT
>.)
>
>My ENT says that his lab doesn't culture for most anaerobes, so that he
>only cultures for aerobes.
>
>And those aerobe cultures invariably turn up negative.

Yes most ENT's seem to say they rarely get any useful informations from
cultures.

It can be useful in the rare case though.  Dr. Kennedy did one (of course it
came back negative).
kathywb2001@yahoo.com - 14 Mar 2005 00:27 GMT
Steven and Don,

   Why do most ENTs say they don't get useful information from
cultures?  Does a negative culture mean that it is probably anaerobic
or that it isn't an infection?  From everything I have read this
shouldn't be done in cases where the person maybe has a few acute cases
a year, but should be done in chronic cases.  It also seems to me that
a positive culture would be more useful than a CT scan.
Don Brady - 14 Mar 2005 02:08 GMT
>Steven and Don,
>
[quoted text clipped - 4 lines]
>a year, but should be done in chronic cases.  It also seems to me that
>a positive culture would be more useful than a CT scan.

Actually I have reviewed the issue and I now agree with you that it should be
done.

Dr. Kennedy did do one routinely for me, but most others did not.   But I think
he was right.  He pretty well alwys is because he has written so many papers on
everything, including this topic......

Rate this thread:






 
Sign In
Join
My Latest Posts
My Monitored Threads
My Blog
My Photo Gallery
My Profile
My Homepage

Start New Thread
Enable EMail Alerts
Rate this Thread



©2008 Advenet LLC   Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.