Hi,
how is your son?
Monica



--- In helpsinuses@yahoogroups.com, "Heide" <bearfan1974@...> wrote:
>
> My son is 8 years old and is suffering from severe chronic
> sinisitus.  In the last two years we've been to almost a hundred
> specialist, had allergy test (negative) , two sweat test for CF (
> abnormal), two genetic dna sequencing (normal), tons of blood draws
> and sinus cultures and immuno- testing.  Yet still no answer.  It
> started with strep- he would get it every so often.  Then he started
> getting infections monthly.  Finally they did tonsil and adnoid
> removal and the surgeon came out concerned.  Apparently my sons'
> adnoids had infection all over them.  Also the sinus cavities were
> full of infectious material.  The surgeon said he needed to follow up
> with a Cat scan.  When we went in for the results the first thing the
> ENT said is "this is no good"  We looked and shocked- the sinuses
> were all swollen shut almost completely.  The maxillary sinuses one
> had the size of a marble, the other one a little larger, but no
> drainage.  The sphenoid and all the others were completely swollen
> shut.  Thus started the series of testing for cystic fibrosis ( took
> a year to finally get a negative for sure), immunology- he has
> somewhat low IgG, allergies- nothing!!!.  The doctor decided after
> looking at the sinus that he would do the balloon surgery.  He did
> it, prescribed antibiotics and steroid, and said my son was cured.  A
> month later my son was infected again.  Another CAT scan showed that
> it had swollen shut again.  So surgery two where the doctor was more
> invasive in the balloon procedure.  He put my son on extreme
> antibiotics for months and steroids - in a month or two the sinuses
> were completely swollen shut again.  By this time my husband and I
> were upset.  The doctor was confused and didn't want to do a more
> invasive surgery.  But my son gets so out of it when he's sick he's
> just spacey and confused, can't follow directions, forgets what he's
> doing, spins in circles, talks to the walls.  Right after surgery
> he's bright ,energetic, normal.  For a little while.  Than back to
> black around the eyes, puffy , it's horrible.  So we get a second
> opinion- 3 surgeries in one year and no results.  This doctor takes
> one look at the CAT scans and points out that the disease has
> actually progressed and is worse and my son needs immediate
> endoscopic surgury to cut open and remove bad tissue.  So surgery
> number four.  My poor boy- he wakes up each time after surgery
> vommitting blood,  crying, sick, and we tell him we're making him
> better but we're not.  His last surgery was August, by Sept. he had a
> polyp in his nose.  We were given steroid and antibiotic drops to put
> in the sinuses while he hung upside down.  We're still doing daily
> saline washes and nasal steroid sprays.  This last visit we were told
> he's swollen and infected again.  We go back in two weeks to decide
> on surgery or not- my son's back on 21 days antibiotic.  We asked for
> a referal to Mayo- a major medical center, since only 1% of children
> get nasal polyps.  I'm so upset.  I can't begin to describe to people
> the effect this is having on my son's well- being.  It affects how he
> does in school too.
>
> What I've tried so far, dairy free, flax seed and fish oil,
> probiotics, enzymes, sugar free-  no results.
>

--- In helpsinuses@yahoogroups.com, "Jo" <blessingsflow60@...> wrote:
>
> Oh....Has anyone had the Sinus Surgery that was asthmatic?  Dod the
> packing and drainage in the healing process pose any problems?
>
I've had 4 surgeries some "remodeling" some just polyp removal, No
problems at all with healing. Had to have the sinus surgeries to
breath thru nose.....breathing thru mouth triggered the asthma last
surgery close to 10 yrs, ago now get steroid shots couple times a year
as needed for allergies, "kenalog" some people have side effects from
this, so far I've had none and not as risky as prednisone.
Ken

Oh....Has anyone had the Sinus Surgery that was asthmatic?  Dod the
packing and drainage in the healing process pose any problems?

I would recommend getting homeopathic Arnica tablets for after the
surgery (these reduce swelling and inflammation with no side effects)
- you can get at a health food store or Whole Foods.

Also, the probiotics are really important as the antibiotics after the
surgery will wipe out all your good bacteria (with the bad). Health
food store will have these too - you can ask a clerk to help you pick
out some good ones.

Melinda C.

Hi Everyone
After much attempts at steroids to shrink my polyps, I am finally
having my sinus surgery on March 2, 2009. I pray it goes well. My
pre-op consultation is Feb 4. Is their any clarifications that I
should ask the doc at that time? I have noted many of the inputs that
you who have had the surgery shared with the rest of us. I am taking
my extra Vitamin C starting now. I think someone mentioned probiotics
but I am not too familiar with that. I am praying that the surgery
may reverse my anosmia but of course I know not to put my hopes up so
I will be grateful for any relieve it renders.

Hi Everyone
  After much attempts at steroids  to shrink my polyps, I am finally
having my sinus surgery on March 2, 2009.  I pray it goes well.  My
pre-op consultation is Feb 4.  Is their any clarifications that I
should ask the doc at that time?  I have noted many of the inputs that
you who have had the surgery shared with the rest of us.  I am taking
my extra Vitamin C starting now.  I think someone mentioned probiotics
but I am not too familiar with that.  I am praying that the surgery
may reverse my anosmia but of course I know not to put my hopes up so
I will be grateful for any relieve it renders.

Hi Melinda,
Yes, I have been on SOO many antibiotics from July to December, not to
mention steriods a few times and TONS of motrin. But,  I haven't taken
any antiobiotics since Dec. 10th. Some tylenol, not nearly as much as
before.  I stopped with motrin and switched to tylenol 2 weeks before
the surgery. The reason I think it is suinus drainage is because my
head "clicks" constantly then I feel it draining in my throat. I do
take probiotics, it seems to help a little bit.  Tammy

--- In helpsinuses@yahoogroups.com, "spanishmiss430"
<spanishmiss430@...> wrote:
>
> What makes you believe the issues aren't antibiotic related?
> Antibiotics for sinus stuff did a number on my gut and I'll never take
> them again unless it's a life-threatening emergency. Are you taking
> high-quality probiotics and eating healthfully to repopulate your gut
> with good bacteria?
> Melinda C.
>

What makes you believe the issues aren't antibiotic related?
Antibiotics for sinus stuff did a number on my gut and I'll never take
them again unless it's a life-threatening emergency. Are you taking
high-quality probiotics and eating healthfully to repopulate your gut
with good bacteria?
Melinda C.

I was just wondering if anyone has experienced this, and if it is
related to sinus surgery.  On dec. 3rd I had balloon sinuplasty and
septoplasty. The Dr said my frontal sinuses were really blocked, and I
had 2 cysts also in the maxillary sinuses, he said at the time of the
surgery they were already starting to break up.  All is better now as
far as pain goes, wonderful in fact, but since the day of the surgery,
I have had alot of stomach problems, indegestion, etc.. At 1st I
thought it was from the antibiotic but that wasn't it, and for about 1
week now I have been couging up mucous, really bad in the am. Somtimes
I have a hard time sleeping too, maybe due to this. The ENT said it is
normal, and 4 weeks is considered a quick recovery,  usually it takes
up to 3 months.  My sinuses keep "clicking" too, especially when I keep
my mouth open.   I guess it's nothing too serious, and I will take this
anyday over the horrible pain and headaches I used to get.  Just
wondering if anyone else experienced this after surgery?   Thanks  Tammy

Heide-
I'm very glad to hear that you were able to take your son to the Mayo
clinic and that the testing has been able to pinpoint what's
happening. I sincerely hope they can help your poor son. From what I
heard, people go there from all over the world. I'll email you the
names of the 2 ENTs in my area who I thought were very good too.
Monica


--- In helpsinuses@yahoogroups.com, Scott Solberg <bearfan1974@...> wrote:
>
> We went to Mayo this week- after an MRI that ruled out brain
involvement.  Of course Mayo noticed scar tissue now that's attaching
the septum to whatever so now he's worse than what he started.  We're
going back twice in Jan. to see more specialist.  His nose is a mess.
Full of infection, polyps, swelling- blah!!!!
>
>
> Heide
>
>
> "Only those who risk going too far can possibly find out how far
they can go."
>
> ~ T.S. Elliot
>
> --- On Wed, 12/17/08, Gail Pearce <gailpearce@...> wrote:
>
> From: Gail Pearce <gailpearce@...>
> Subject: Re: [helpsinuses] Very desperately looking for answers
> To: helpsinuses@yahoogroups.com
> Date: Wednesday, December 17, 2008, 8:41 AM
>
>
>
>
>
>
> Heide:
>
> This is horrible, I really feel for your son.  I am 40 and have had
6 sinus surgeries and feel that I would have been better off without
them.  I now suffer from terrible migraines and sinus pain and I
"feel" my sinuses every waking morning.  I also deal with a foggy head
and bad concentration, eye problems, gum and teeth problems - that I
never had before my surgeries.
>
> I hope Mayo Clinic comes through for you.  Please keep us updated.
>
> Gail
>
>
>
>
>
> From: Heide <bearfan1974@...>
> To: helpsinuses@yahoogroups.com
> Sent: Tuesday, November 25, 2008 9:38:09 AM
> Subject: [helpsinuses] Very desperately looking for answers
>
>
>
> My son is 8 years old and is suffering from severe chronic
> sinisitus. In the last two years we've been to almost a hundred
> specialist, had allergy test (negative) , two sweat test for CF (
> abnormal), two genetic dna sequencing (normal), tons of blood draws
> and sinus cultures and immuno- testing. Yet still no answer. It
> started with strep- he would get it every so often. Then he started
> getting infections monthly. Finally they did tonsil and adnoid
> removal and the surgeon came out concerned. Apparently my sons'
> adnoids had infection all over them. Also the sinus cavities were
> full of infectious material. The surgeon said he needed to follow up
> with a Cat scan. When we went in for the results the first thing the
> ENT said is "this is no good" We looked and shocked- the sinuses
> were all swollen shut almost completely. The maxillary sinuses one
> had the size of a marble, the other one a little larger, but no
> drainage. The sphenoid and all the others were completely swollen
> shut. Thus started the series of testing for cystic fibrosis ( took
> a year to finally get a negative for sure), immunology- he has
> somewhat low IgG, allergies- nothing!!!. The doctor decided after
> looking at the sinus that he would do the balloon surgery. He did
> it, prescribed antibiotics and steroid, and said my son was cured. A
> month later my son was infected again. Another CAT scan showed that
> it had swollen shut again. So surgery two where the doctor was more
> invasive in the balloon procedure. He put my son on extreme
> antibiotics for months and steroids - in a month or two the sinuses
> were completely swollen shut again. By this time my husband and I
> were upset. The doctor was confused and didn't want to do a more
> invasive surgery. But my son gets so out of it when he's sick he's
> just spacey and confused, can't follow directions, forgets what he's
> doing, spins in circles, talks to the walls. Right after surgery
> he's bright ,energetic, normal. For a little while. Than back to
> black around the eyes, puffy , it's horrible. So we get a second
> opinion- 3 surgeries in one year and no results. This doctor takes
> one look at the CAT scans and points out that the disease has
> actually progressed and is worse and my son needs immediate
> endoscopic surgury to cut open and remove bad tissue. So surgery
> number four. My poor boy- he wakes up each time after surgery
> vommitting blood, crying, sick, and we tell him we're making him
> better but we're not. His last surgery was August, by Sept. he had a
> polyp in his nose. We were given steroid and antibiotic drops to put
> in the sinuses while he hung upside down. We're still doing daily
> saline washes and nasal steroid sprays. This last visit we were told
> he's swollen and infected again. We go back in two weeks to decide
> on surgery or not- my son's back on 21 days antibiotic. We asked for
> a referal to Mayo- a major medical center, since only 1% of children
> get nasal polyps. I'm so upset. I can't begin to describe to people
> the effect this is having on my son's well- being. It affects how he
> does in school too.
>
> What I've tried so far, dairy free, flax seed and fish oil,
> probiotics, enzymes, sugar free- no results.
>

hi my central ac is doing it again. had to turn it on today and it
smells so musty and sends my allergies and fatigue sky high. last yr we
had the ducts cleaned and the ac co. installed a uv light for the coil
int he attic to rid the problem-and its back. do any of u know about
this sort of issue and how to fix it??? i need to turn on the ac but
the msell send my sinuses nuts. help...
art in texas

yep - definitely red cheeks, and sometimes redness between my eyebrows too.

fever is your body's way of fighting the infection. as long as it
doesnt get too high, the thinking is that you should not try to bring
it down too aggressively. its there for a reason. i know fevers make
you feel worse though.

depends where you take the temperature too - i would guess that it
woud read higher with a thermometer in your mouth, since its close to
the source. if taken elsewhere it may be lower. just a theory - might
be off track but it sounds logical to me.

kim

2008/12/7 Julie <cascadiaclimber@...>:

> right now is the fevers and red cheeks. Does anyone else get that
> when their sinuses are inflammed? My doctors are going to think I
> have some horrible virus with all the fevers I get. I get them maybe
> once or twice a day. Usually between 99.7-100.5. Yes, that is high
> for me since my normal is usually 98.4 or so. If I take ice and put
> it on my cheeks my fever goes down to normal quite quickly. Its hard
> for me to imagine how inflammed sinuses can raise body temperature. I
> feel okay otherwise. Any thoughts?

--
--------
My inferiority complex is not as good as yours.
Robin Banks
bluefilly@...
Zsa Zsa Gabor  - "A man in love is incomplete until he has married.
Then he's finished."

Thanks Melinda,
Each day does seem to get a little bit better. I'm trying to stay
positive and hope for the best. Although my face is still sore, it is a
wonderful thought to know that after all these years I no longer have a
deviated septum, and maybe now will get some relief :)  Tammy

--- In helpsinuses@yahoogroups.com, "spanishmiss430"
<spanishmiss430@...> wrote:
>
> Tammy,
> I hope you are feeling even better as I write this.
>
> After my surgery, the first two days or so were bad, and then for
about
> 5 more days I was tired and hung out on the couch and took
painkillers.
> By one full week later, I was able to be back at work, still tired,
but
> only taking non-prescription painkillers and doing ok as long as I
> rested after work. There's a light at the end of the tunnel! =)
> Melinda
>

Tammy,
I hope you are feeling even better as I write this.

After my surgery, the first two days or so were bad, and then for about
5 more days I was tired and hung out on the couch and took painkillers.
By one full week later, I was able to be back at work, still tired, but
only taking non-prescription painkillers and doing ok as long as I
rested after work. There's a light at the end of the tunnel! =)
Melinda

Heidi,
I am so sorry that you have to see your son suffer like that, I can't
even imagine. I have a son who is 8 also. He had some problems when
he was a baby with ear infections, then tubes in his ears.  After the
tubes the ear infections came back, and his eardrums ruptured. I
can't even imagine that pain, and it killed me to see him suffer like
that.  I wished it were me instead of him. Now he's fine (the past 3
yers) and hopefully will stay that way. He has autism but to me it's
not a big deal anymore, I just thank God every day that he is happy
and healthy. I hope everything works out for you. It must be so hard
for you to see him go through that. Hang in there, he needs you to be
strong.  I will say a prayer for him and for you :)  Tammy
--- In helpsinuses@yahoogroups.com, Scott Solberg <bearfan1974@...>
wrote:
>
> my son is 8 and he's had 4 surgeries in the last year and a half. 
The first was tonsil and adnoid removal and lavage of the sinises. 
The next two were balloon surgeries.  The last one was endoscopic
tissue removal.  All of his sinises are completely swollen shut-
maxillary, sphenoid, all them.  After each surgery he vomits blood at
least twice right away.  He goes through bandages on his nose every
15 minutes the first day, but then it slows down.  He usually has the
most pain when he first comes out of surgery and the first night.  He
usually wakes me up twice the first night.  He always has packing up
his nose.  One time the packing was supposed to dissolve, but it
didn't, so he bled for 10 days.  The tape on his face makes the skin
raw.  We learned to ask for cloth tape.  Now they do cloth tape on
his IV, blood draws, and during surgery.  He usually stays home for
one day after surgery and then goes back to school.   He gets
>  embarressed with the sinus bandages, but after three surgeries his
classmates are used to it now and are very protective of him.  He
doesn't sleep well after surgery for a week at least- mouth breathing
dries his throat, his lips get chapped.  They put my son on the most
heavy antibiotics that a child can be on.  We came home from the last
surgery with 12 bottles of it.  Our pharmacy didn't have enough, so
they had to order and mail it.  He usually is on oral steroids 3-4
weeks after surgery to try to keep it open.  Last time his face
swelled quite a bit and he gained weight.  The antibiotics he goes on
can kill you and cause severe stomach problems.  I can say for a 
fact that the last two years my son has been through hell trying to
manage his sinuses and it affects every part of his life.  We find
out Monday if he'll have his 5th surgery in two years.  He's scared. 
He just had surgery in August.  He asked me if I will carry him to bed
>  again, like I did after the last surgery- he's 4 foot 6 inches.  I
have watched him after surgery , when he's vommitting blood and his
nose is bleeding and I can't imagine much worse than having something
like that done in your head.  The pain must radiate all through your
head.   I can say that he is a very strong and brave kid and it looks
horribly painfull and uncomfortable.  But once they get him clear his
energy is high, he's bright, his eyes sparkle.  When he's well he can
think clear, he does better in school, he's a whole different kid. 
Once it swells shut again , like now, his eyes are black all around
them.  The corners of his eyes have a bright red streak in the
crease.  He's confused, spacey, tired, moody.  After surgery he
reminds me of the person he was before all this started. 
>  
> My feeling is that hang in there- and hopefully the surgery can
bring a person back to feelign healthy and well and be able to enjoy
their life.  I hope your surgery makes your whole life better, so
this part of it will be worth it looking back.  I guess that's what I
tell myself, otherwise I would be handicap by the fear and watching
the pain my child suffers.  I really hope one day he gets a good
result and it's all worthwhile.
>  
>
>
> Heide
>
>
> "Only those who risk going too far can possibly find out how far
they can go."
>
> ~ T.S. Elliot
>
> --- On Sat, 12/6/08, Tammy <vitzie@...> wrote:
>
> From: Tammy <vitzie@...>
> Subject: [helpsinuses] surgery recovery
> To: helpsinuses@yahoogroups.com
> Date: Saturday, December 6, 2008, 12:08 PM
>
> For those of you who had surgery,  I was just wondering what was
the
> recovery like, how long did it take?  I had a septoplasty and
Balloon
> Sinuplasty (endoscopic sinus surgery too  I think) 3 days ago. It
> wasn't all that bad, the 1st day was really rough, mostly from all
> the drugs and anesthesia I think. Im not really a big fan of
> vicodin :)  I think I just expected to be "cured" the next day and
I
> now realize it may be a long slow process, which is very
frustrating
> for me. My nose it still really sore, i have some stitches that
will
> dissolve no packing or splints. I guess I would say the pain is
about
> a 4 on a scale from 1 to 10. He said my nose was really crooked and
> the frontal sinuses were almost completely blocked. I was really
> scared being that they are right next to the brain.  I used to get
> terrible headaches.  They're gone now. My ears still hurt,
especially
> when I sleep, but not as bad as before the surgery. Maybe I have an
> ear infection, not sure, hopefully it will go away. I had 2 cysts
in
> the maxillary sinuses, he said they weren't that bad but they sure
> FELT bad! A little better now. It's hard to sleep I wake up with
> pain, so I think lack of sleep makes things seem worse than they
> really are. Im really tired and sore. The ist day was scary
coughing
> up alot of blood and blood in the nose. Then the antibiotic made me
> sick to my stomach. I guess i just wasn't prepared what to expect,
> but they said that's all normal.  Overall, Im starting to feel
> better, but i just want to feel like myself again and not sick and
> tired all of the time... i guess I just need to have some patience.
> Anyway... I was just wondering what is the normal recovery time,
and
> for anyone who needs to to have this surgery, It really wan't all
> that bad :)   I hope it will all be worth it VERY soon!    Thanks
for
> listening.... Tammy
>
> Oh and 1 other thing.. these people that get "nose jobs" just to
look
>
> good...are they nuts???    :)
>
>
> ------------------------------------
>
> Chronic Sinusitis Support GroupYahoo! Groups Links
>

I haven't posted in a while. I was actually doing prtty good since
being on xolair.  But ironically, while stopping xolair for a few
months, my sinus symptoms slowly started to return. First it was the
mild sinus pain that would come and go every few days or so.  Then it
increased slightly and was more continuous. My nose became more
stuffier and I had increased congestion.  Then I began to get my red
cheeks and fevers again. I went to the doctors for something totally
unrelated and when he took my temperature I had a slight fever and
noticed my cheeks were bright red. I told him it was just my sinuses
inflammed. He was concerned and ran blood work and took a CT scan of
my sinuses. I got the results back last week. My CT scans are never
good, but I didn't think it was too bad.  I had some polyps in my
right maxillary, my frontals were completely blocked, sephnoids and
ephmoids were partially blocked, and my estachian tubes and mastoids
were increased density specifically the right where I had mastoiditis
several years ago and am a little hard of hearing in that ear. I know
it sounds bad, but considering I had 7 sinus surgeries and I'm only
25 I don't think the report was that bad.  Anyway, my frustration
right now is the fevers and red cheeks. Does anyone else get that
when their sinuses are inflammed? My doctors are going to think I
have some horrible virus with all the fevers I get.  I get them maybe
once or twice a day.  Usually between 99.7-100.5. Yes, that is high
for me since my normal is usually 98.4 or so.  If I take ice and put
it on my cheeks my fever goes down to normal quite quickly.  Its hard
for me to imagine how inflammed sinuses can raise body temperature. I
feel okay otherwise. Any thoughts?

For those of you who had surgery,  I was just wondering what was the
recovery like, how long did it take?  I had a septoplasty and Balloon
Sinuplasty (endoscopic sinus surgery too  I think) 3 days ago. It
wasn't all that bad, the 1st day was really rough, mostly from all
the drugs and anesthesia I think. Im not really a big fan of
vicodin :)  I think I just expected to be "cured" the next day and I
now realize it may be a long slow process, which is very frustrating
for me. My nose it still really sore, i have some stitches that will
dissolve no packing or splints. I guess I would say the pain is about
a 4 on a scale from 1 to 10. He said my nose was really crooked and
the frontal sinuses were almost completely blocked. I was really
scared being that they are right next to the brain.  I used to get
terrible headaches.  They're gone now. My ears still hurt, especially
when I sleep, but not as bad as before the surgery. Maybe I have an
ear infection, not sure, hopefully it will go away. I had 2 cysts in
the maxillary sinuses, he said they weren't that bad but they sure
FELT bad! A little better now. It's hard to sleep I wake up with
pain, so I think lack of sleep makes things seem worse than they
really are. Im really tired and sore. The ist day was scary coughing
up alot of blood and blood in the nose. Then the antibiotic made me
sick to my stomach. I guess i just wasn't prepared what to expect,
but they said that's all normal.  Overall, Im starting to feel
better, but i just want to feel like myself again and not sick and
tired all of the time... i guess I just need to have some patience.
Anyway... I was just wondering what is the normal recovery time, and
for anyone who needs to to have this surgery, It really wan't all
that bad :)   I hope it will all be worth it VERY soon!    Thanks for
listening.... Tammy

Oh and 1 other thing.. these people that get "nose jobs" just to look
good...are they nuts???    :)

Don't think they come and go rapidly but they do shrink or deflate and
can swell again  rapidly, a surgeon who removed mine in 2 of 4
surgeries said they are just spongy tissue filled with water. Once
removed they can return but it takes time. Mine returned 3 times after
each surgery over 10yrs. or so. It's been about 10yrs. since last
surgery still have continuous up and down sinus problems but no more
polyps. Neil Med sinus rinse may give some relief, using the strongest
recommended dose might temporarily shrink the polyps (it's a salt
water solution) It's also good for flushing allergens and/or mucus  I
use it as needed. The non drowsy antihistamines OTC or prescription
don't work at all for me.

Ken


    --- In helpsinuses@yahoogroups.com, "Heide" <bearfan1974@...> wrote:
>
> My son has recently started to develop nasal polyps.  The first one was
> in the left nostril.  The doctor gave us steroid drops and other
> medication and it shrunk down and dissappeared in about 2 weeks.  Two
> weeks ago the doctor said it was gone.  Today he said my son has a
> polyp on the other side, blocking the entry to the mastoid.  He put
> cotton or some type of dressing with antibiotic and steroid on it and
> prescribed oral steroids.  My son is already on 21 days of antibiotics,
> but is still having large amounts of green drainage from his nose.  His
> eyes are very dark black around them and his face is very puffy around
> the eyes.  Can polyps come and go that rapidly??  Why???  Is this
> normal????  How can we keep him at the doctor every other week and on
> medication all the time?
>