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Medical Forum / Diseases and Disorders / Sinusitis / August 2006

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David Kennedy in Philadelphia?

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judy - 17 Aug 2006 20:31 GMT
What is the feeling of the group about Dr. Kennedy?  He did my first
surgery 20 years ago, is world renowned and I am thinking of returning
to him for another evaluation as noone else (and four surgeries later)
seems to be able to help.  Any experiences to share?
kathywb2001@yahoo.com - 17 Aug 2006 22:46 GMT
Don Brady had his surgery done by Dr. Kennedy so I'm sure he will give
you some positive feedback later.  I'm having to go out of town so I
just wanted to give you a quick response.   I thought what was left of
my ethmoids was giving me my problems so I sent my CT scans to him for
review.  All I ever heard back was that I wasn't a candidate for
surgery at that time.  I assume he meant the ethmoids.  Don can tell
you more, but his main idea, I think, is that there is infection in the
ethmoids and removing the bony structures helps.  I was impressed that
I was able to send my scans and he looked at them for free.   That was
a year ago, so I don't know if he still does that, but you could call
his office and find out.  It took about a month to get a response and
he did send the scans back.  I don't know the number, but am sure you
can find it on the internet.

kathyw

> What is the feeling of the group about Dr. Kennedy?  He did my first
> surgery 20 years ago, is world renowned and I am thinking of returning
> to him for another evaluation as noone else (and four surgeries later)
> seems to be able to help.  Any experiences to share?
Don Brady - 18 Aug 2006 06:24 GMT
>Don Brady had his surgery done by Dr. Kennedy so I'm sure he will give
>you some positive feedback later.  I'm having to go out of town so I
[quoted text clipped - 9 lines]
>he did send the scans back.  I don't know the number, but am sure you
>can find it on the internet.

Kathy said it all for me.

He limits his practise now, but since Judy had surgery done by him before, that
should help getting to see him anyway.

As Steven said, he will not accept some forms of insurance as full payment- he
got tired of their demands to dictate low reimbursement rates for hos own
services and control what procedures were used.   Sometimes it can be worked
out.  The Hospital itself will accept most insurance for its own charges, which
are separate.

He is a very keen intellect and communicator as well as everything else.  He
listens, but probably is close to the objective school in general.  

One of the incidental nice things is that his office runs extremely smoothly,
with specially-qualified ENT nursing assistants and examination procedures etc.
that I have not seen elsewhere.  

Now, he  focuses primarily on surgery, not non-surgical management, so I would
lnot see him for the latter.

As to another poster's comments that he failed to do surgery when he should
have, I am sorry that happened.

Anyone should probably get several opinions before *not* getting surgery, just
as much as before getting surgery, in difficult cases. Some surgeons may
specialize in certain forms of sinusitis, and may miss other forms.  

Dr. Kennedy focuses primarily on the mechanics of significant sinus surgery
where that is needed, including difficult cases.   Some procedures are named
after him.  There is the "Kennedy pack" etc.
judy - 18 Aug 2006 13:46 GMT
> >Don Brady had his surgery done by Dr. Kennedy so I'm sure he will give
> >you some positive feedback later.  I'm having to go out of town so I
[quoted text clipped - 41 lines]
> where that is needed, including difficult cases.   Some procedures are named
> after him.  There is the "Kennedy pack" etc.
judy - 18 Aug 2006 13:50 GMT
> >Don Brady had his surgery done by Dr. Kennedy so I'm sure he will give
> >you some positive feedback later.  I'm having to go out of town so I
[quoted text clipped - 11 lines]
>
> Kathy said it all for me.

Thanks to all for replying re: David Kennedy.  I will add my own
experience when I get to him which is inevitable.  My CT scans are not
"normal" and there is constant inflammation and infection but surgery
is not suggested because I am diagnosed with a "mucosal problem" ie:
damaged "polypoid" tissue which surgery cannot help and which is
probably partly the result of multiple surgeries.  BTW, what is a
Kennedy pack?

> He limits his practise now, but since Judy had surgery done by him before, that
> should help getting to see him anyway.
[quoted text clipped - 25 lines]
> where that is needed, including difficult cases.   Some procedures are named
> after him.  There is the "Kennedy pack" etc.
Don Brady - 18 Aug 2006 16:40 GMT
>Thanks to all for replying re: David Kennedy.  I will add my own
>experience when I get to him which is inevitable.  My CT scans are not
>"normal" and there is constant inflammation and infection but surgery
>is not suggested because I am diagnosed with a "mucosal problem" ie:
>damaged "polypoid" tissue

That is, you have polyps.  

> which surgery cannot help and which is
>probably partly the result of multiple surgeries.  BTW, what is a
>Kennedy pack?

It can be used post surgery to prevent polyps where ajacent areas are touching.

I started to develop a polyp post-surgery and he actually cured it. using such
a tiny pack.....
judy - 19 Aug 2006 17:22 GMT
> >Thanks to all for replying re: David Kennedy.  I will add my own
> >experience when I get to him which is inevitable.  My CT scans are not
[quoted text clipped - 12 lines]
> I started to develop a polyp post-surgery and he actually cured it. using such
> a tiny pack..

Well, Don, they tell me that polypoid tissue is not polyps but
chronically inflamed and changed tissue...beats me...I have trouble
understanding that concept as well as another description in my med
summary called lateralized middle turbinate which is apparently some
kind of post surgery problem for which there is also no treatment.  I
am hoping that I don't have Empty Nose Syndrome which results when too
much tissue removed and basically (like the rest of us) use irrigation,
irrigation, irrigation (and Ponaris) for everyday relief (not always
possible!)...Wish Kennedy had used his "pack" 20 years ago!  thanks,
judy...
Don Brady - 19 Aug 2006 18:33 GMT
>Well, Don, they tell me that polypoid tissue is not polyps but
>chronically inflamed and changed tissue...beats

Polypoid literally means polyp-like or composed of polyps, but I think you are
right that that "polypoid tissue"  has exactly the meaning you give.

>me...I have trouble
>understanding that concept as well as another description in my med
[quoted text clipped - 5 lines]
>possible!)...Wish Kennedy had used his "pack" 20 years ago!  thanks,
>judy...
Steven L. - 18 Aug 2006 00:43 GMT
> What is the feeling of the group about Dr. Kennedy?  He did my first
> surgery 20 years ago, is world renowned and I am thinking of returning
> to him for another evaluation as noone else (and four surgeries later)
> seems to be able to help.  Any experiences to share?

I had wanted to see Dr. Kennedy myself, but he's not in my medical
insurance network.

Signature

Steven D. Litvintchouk
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Remove the NOSPAM before replying to me.

Edward - 18 Aug 2006 02:00 GMT
I had two very negative experiences with Dr. Kennedy, and I would not
recommend him.  Around 1990, I suffered from chronic inflammation in
my throat, frequent sore throats, chronic unremmiting headaches,
terrible facial pain, swollen tonsils. The problem was only relieved
by high does IV antibiotic therapy.  My father was a physician (now
deceased) felt it was obvious that my sinuses were infected, and the
bony structures in in the ethmoid region in particular.  Dr. Kennedy,
a non-thinker in my opinion, took a look at my CT scan and told me
that I was completely normal and to go on my way, that all my symptoms
were likely psychosomatic.  (I am sure the puss coming from my sinuses
was psychosomatic)   I couldnt find anyone locally to do ethmoid
surgery, and I depended on him to go ahead and do it.  Unfortunately,
my CT scan was too close to normal.  What a great thinker he was/is.

A few years later, I had a repeat CT scan, and they found polyps in my
anterior ethmoids bilaterally.  A local physician removed my anterior
ethmoids, and I had some relief from my symptoms.  Because only my
anteriors were removed, the surgery was done with a local anesthesia,
and i had no problems.

Years later, around 2000, I had another CT scan to see if they could
find anything abnormal to get more surgery.  Unfortunately, the CT
scan was too close to normal to justify surgery on the remaining
ethmoids.  So i sent the CT scans and history to Dr. Kennedy.  His
secretary contacted me a week later.  Dr. Kennedy could not help me.
Fortunately, my general internist recommended a local ENT that might
help, Dr. Daniel Jacob.  I thought it would be a complete waste of
time, but then, i will give it a try.  Wow, what a difference.  He
looked at my CT scans, and took a thorough history in about half an
hour.  Then he shocked me.  Instead of saying he could do nothing, he
actually said "Edward, there are two camps in the ENT field.  In the
first camp, if you have a normal CT scan, then you do nothing.  In the
second camp, if you have every symptom of severe ethmoid disease,
except you dont have gross abnormality on your CT scan, you go ahead
and remove as much ethmoid tissue as possible.  I am in the second
camp".  Wow, I actually found an ENT who can think out of the box to
solve problems.  To make a long story short, he did an ethmoidectomy a
few weeks later, and it was amazing how much better i felt.  A year
later, he did another surgery to remove all remaining ethmoid tissue
(he could not get to all the posterior ethomiods in the first
operation, because its so dangerous) and also opened up the ostia to
the maxillaries a little.

Today, I live with a chronic infection of my sphenoidal sinuses, which
is a bone infection, which is inoperable.  If Dr. Kennedy had taken my
complaint seriously and done aggressive surgery, the initial infection
would not have spread, and I would not have any sinus problems.  Its
important to remove any bone infection immediately by surgery and not
mess around in my opinion.  If Dr. Kennedy had acted 15 years ago, I
dont think that i would have problems now due to spreading of the
infection.

My philosophy about CT scans: If you wait until your symptoms progress
to the point that you have an abnormal CT, then you have waited too
long for surgery.  (One local ENT wanted to wait for the disease to
progress to the point where my CT scan was abnormal, then he would
operate.  Ugh, this makes no sense morons)

My thought is that local ENT doctors can be much better than going to
a famous published doctor.  Many of these academic ENT doctors cannot
think out of the box to solve problems, and do medicine by recipe (if
A, then B).  If you have a problem that is not exactly described in a
textbook, you are totally screwed.  They want you out of their office
because they dont have time to solve a problem they havent seen
before.  I certainly was screwed.

By the way, I looked at all Dr. Kennedy's publications, and i am not
impressed with his "research".  BTW,  I am a biochemist, and I own a
small biotech company here in New Orleans.  If you need an excellent
ENT surgeon, I would recommend Dr. Daniel Jacob in New Orleans.  He
uses instatrack for all his endoscopic procedures.

>What is the feeling of the group about Dr. Kennedy?  He did my first
>surgery 20 years ago, is world renowned and I am thinking of returning
>to him for another evaluation as noone else (and four surgeries later)
>seems to be able to help.  Any experiences to share?
Steven L. - 18 Aug 2006 06:09 GMT
> Today, I live with a chronic infection of my sphenoidal sinuses, which
> is a bone infection, which is inoperable.  

How do you know this?

Who diagnosed you with an inoperable bone infection, and how did they
make that determination?

Signature

Steven D. Litvintchouk
Email:  sdlitvin@earthlinkNOSPAM.net
Remove the NOSPAM before replying to me.

Don Brady - 18 Aug 2006 06:35 GMT
>> Today, I live with a chronic infection of my sphenoidal sinuses, which
>> is a bone infection, which is inoperable.  
[quoted text clipped - 3 lines]
>Who diagnosed you with an inoperable bone infection, and how did they
>make that determination?

Absolutely a good question.  Inoperable to one surgeon may be operable to one
more experienced in extensive surgery  (e.g U. Penn.) that most surgeons would
not do.

Even if it is in inoperable,  perhaps it might still be possible to mitigate it
with the right medical or other approach......there are many approaches out
there.....

Now, sphenoids are very difficult, no question about it....
Edward - 18 Aug 2006 07:05 GMT
>> Today, I live with a chronic infection of my sphenoidal sinuses, which
>> is a bone infection, which is inoperable.  
>
>How do you know this?
Several lines of evidence: (a) location of inflammation in back of
throat corresponds to the lymphatic drainage of the sphenoids, (b) It
cant be the ethmoids, as these have been removed, (c) location of pain
on top of head (slight) and between eyes (major) is characteristic of
sphenoids, (d) iv therapy directed to gram positive (strep or staph)
is effective in diminishing all symptoms, but i get rubber band
effect.  After several weeks of iv infusion, a small amount of
infection remains, and eventually it rebounds in a few months,
indicative of osteomyelitis (deep seated infection).  Attempts to
culture tissue from my prior surgeries werent successful..

>Who diagnosed you with an inoperable bone infection, and how did they
>make that determination?
My ENT and internist.  Sphenoids are right next to pituitary, and both
are opposed to surgery on sphenoids.  The surgery carries a high risk,
and I dont know who would operate.  I did a mediline search recently
and i only found a very few number of articles that discussed
sphenoidectomies, so i conclude that it is a rare procedure

Any advice/comments  would be welcomed.

I realize that Dr. Kennedy is considered a leader in the ENT field.
But the fact is that he did not help me at all.  Neither did the
esteemed ENTs at Tulane and LSU, so he is not alone.  I was fortunate
to find an ENT that was willing to solve the problem, by concluding in
high probability that I had serious sinus disease which did not show
up on CT scan.  My symptoms of headaches, facial pain, sinus pain,
throat inflammation, tonsil inflammation were all greatly diminished
by the two surgeries.
Don Brady - 18 Aug 2006 08:29 GMT
>My ENT and internist.  Sphenoids are right next to pituitary, and both
>are opposed to surgery on sphenoids.  The surgery carries a high risk,
[quoted text clipped - 3 lines]
>
>Any advice/comments  would be welcomed.

I would suggest  telephoning a few authors of articles on sphenoid surgery. One
or two may say "send me CT so I can take a look."   Or they may have some
suggestion or referral.

I have found that yes, you can often actually do this.

Since it is rare,  I would get the opinions of national experts.   Your local
doctors' expertise in this area will be limited.  You can keep your local
doctors involved too -  they should not mind where it is an obscure area.

Now, if course if you can cure it with medicine or a non-surgical approach, so
much the better....
kathywb2001@yahoo.com - 18 Aug 2006 16:20 GMT
> On Fri, 18 Aug 2006 05:09:28 GMT, "Steven L."
> > >Edward wrote:
[quoted text clipped - 13 lines]
> indicative of osteomyelitis (deep seated infection).  Attempts to
> culture tissue from my prior surgeries werent successful..

I had all of the symptoms that you describe.  I don't think I had a
sphenoidectomy as such, but I did have both frontals and sphenoids
opened up by Dr. David Sherris in Buffalo NY.  He uses the intatrack
??? (not really sure if that is the right word), but they did a CT scan
with a thing over my head that took pictures of where he wanted to do
the surgery and then put it on me again before surgery.  I felt very
comfortable with his expertise and knowledge.   I had an acute sphenoid
infection over 10 years ago that was never adequately treated, and he
is the first of many ENTs that actually diagnosed chronic inflammation
in my sphenoids just by looking at my scans and he turned out to be
right because at surgery the right one (where the original infection
was) was almost completely closed up.  It's too soon to tell if it is
going to work with the years of inflammation and still a current
infection I'm trying to clear out, but I was more impressed with him
than any other ENT I have ever seen.  I traveled 11 hours to have this
done.  I may have to have more done later, but would rather take the
less is better if it works first.  You can always take more out, but
you can't put it back in.

Kathyw
judy.n - 18 Aug 2006 16:42 GMT
Edward,
 Thank you for again reaffirming that national experts are often too
busy and too specialized to provide the best care. Excellent care can
and does come from community doctors and the key, as you described it,
was someone who listened and was open to treating your symptoms, not
your scan.
 There is no one best physician, and national reputation is no
guarantee that you as an individual will receive the care you need
(someone else, may have a different result.)
Judy N

> >> Today, I live with a chronic infection of my sphenoidal sinuses, which
> >> is a bone infection, which is inoperable.
[quoted text clipped - 29 lines]
> throat inflammation, tonsil inflammation were all greatly diminished
> by the two surgeries.
Murray Grossan - 18 Aug 2006 18:24 GMT
On 8/17/06 6:00 PM, in article to1ae2hv60pbg6g1c67m0bupb8ae5nad7b@4ax.com,

> I had two very negative experiences with Dr. Kennedy, and I would not
> recommend him.  Around 1990, I suffered from chronic inflammation in
[quoted text clipped - 72 lines]
>> to him for another evaluation as noone else (and four surgeries later)
>> seems to be able to help.  Any experiences to share?

Allow me to comment here: for chronic sinusitis, its not whether you do
surgery or not, its how you treat the problem. You shouldn't ask any doctor
"should I have surgery". The correct question is , How do I get well. ?

For example, most polyps can be shrunk by medication.
Susan - 18 Aug 2006 18:34 GMT
 You shouldn't ask any doctor
> "should I have surgery". The correct question is , How do I get well. ?
>
> For example, most polyps can be shrunk by medication.

Yabbut, he was visiting a doc in a referral center whose area of
specialty is surgery, not treatment.

Those of us with longstanding, chronic conditions end up picking and
choosing who to see based upon our past failures and hopes for future
improvements.

Susan
Murray Grossan - 19 Aug 2006 04:33 GMT
On 8/18/06 10:34 AM, in article 4kmc20Fcq84gU2@individual.net, "Susan"
<nevermind@nomail.com> wrote:

> x-no-archive: yes
>
[quoted text clipped - 11 lines]
>
> Susan

Susan, Tower ENT is primarily a "surgery" practice, yet we manage to get
persons well that are referred to us primarily to have surgery .Should I
have surgery is still the wrong question.

Ask your TV repairpersons should I get a new TV? No, your connections are
dirty and I have cleaned them and now you have a perfect picture.
Susan - 19 Aug 2006 04:50 GMT
> Susan, Tower ENT is primarily a "surgery" practice, yet we manage to get
> persons well that are referred to us primarily to have surgery .Should I
> have surgery is still the wrong question.

I understand your point, Murray, but Kennedy draws folks who are looking
for a particular technique, and these folks have often been told they
need surgery.

I agree that if one hasn't explored treatment for sinusitis, they
shouldn't be pursuing surgery.  I'm wondering why you have inferred that
they haven't already done so, when it's clear they have.

Susan
judy.n - 19 Aug 2006 13:04 GMT
Susan,
 I do agree with the arguement that you shouldn't go to a referral ENT
and only accept the option of surgery. Different patients have
different resources and prior experiences, and may not have explored
medical therapy--or even know about it. Although ENT's are surgeons, if
they are truly treating sinus disease, they will be able to manage it
medically--or make a good referral. Many of the ENT's in the community
treat allergies.
 Personally, when I took my daughter to Lahey, the surgeon we saw had
treated a colleague of mine medically--with oral and topical sporonox.
He immediately suggested surgery for my daughter, which she just as
immediately rejected. He agreed to treat her despite her rejection of
his plan. At this point, she's pursuing immunotherapy and medical
management. Personally, I think at some point she'll probably decide to
have some minimal surgery, but I support her decision to wait. I was
concerned when he suggested the balloon--although she does have frontal
sinus disease.
 The colleague who had seen this MD and recommended him is a pediatric
allergist who had failed his initial conservative therapy. Seeking a
second opinion in Boston, another surgeon told him: "I can open the
door, I can't change the wallpaper."
 So, just because super specialized ENT's become proficient in certain
procedures, that shouldn't be all that they offer. They should evaluate
each patient individually: not just offer their special skills to
everyone they see.
 I agree: the question should be--how can I improve my health? Not,
what sort of surgery should I have? While realizing that you are
seeking the help of someone primarily trained in surgery.
Judy
> x-no-archive: yes
>
[quoted text clipped - 11 lines]
>
> Susan
Susan - 19 Aug 2006 13:48 GMT
>   So, just because super specialized ENT's become proficient in certain
> procedures, that shouldn't be all that they offer. They should evaluate
[quoted text clipped - 3 lines]
> what sort of surgery should I have? While realizing that you are
> seeking the help of someone primarily trained in surgery.

Okay, I'll concede the point.  I guess I'm just too used to having to
figure stuff out myself, trying everything conservative first, then
doctor shopping for the right treatment...

Susan
judy.n - 19 Aug 2006 14:09 GMT
Susan,
 The reality is that most of the super specialists don't tailor their
treatment to the patients--they just do their surgery de jour, and
don't offer medical management. It's just that they should in an ideal
world.
So, Dr. Grossan's statement that we should enter these consults with
"What can you offer me both medically and surgically" is a good point.
Most ENT's won't touch the medical stuff, but we should give them the
option.
 You have an excellent point, He had a good one too, that we shouldn't
let them control the agenda and options (try and stop them....)
Judy
(My older daughter just called to say she's infected again in the left
frontal: she'll consider surgery, but not at this moment, and she'll
probably consider it with our local ENT--because he's thoughtful and
doesn't embrace fads. I keep a log--so does she--and she's on a course
of Augmentin about every 8-10 weeks at this point. Despite daily
biaxin, singulair, allegra, immunotherapy, nasonex and irrigation. She
has the IgA deficiency, so she's a set up for recurrent sinusitis. Her
CT shows a big concha bullosa turbinate just below the ostea on the
left, which blocks her with any mucosal swelling. Lahey wanted to do
the balloon. Our local ENT just wants to do some very minimal removal
of the obstruction. She's been working with autistic kids who drool on
her and her fiance works as an intern, so she's exposed to all the
bugs.)
> x-no-archive: yes
>
[quoted text clipped - 11 lines]
>
> Susan
Susan - 19 Aug 2006 14:19 GMT
\
> Susan,
>   The reality is that most of the super specialists don't tailor their
> treatment to the patients--they just do their surgery de jour, and
> don't offer medical management.

This was my assumption.  That one would visit them not for
medical/clinical case management, but because it was already determined
that surgery was necessary.

 It's just that they should in an ideal
> world.

I agree.  But I'm a realist, and they don't.

>  So, Dr. Grossan's statement that we should enter these consults with
> "What can you offer me both medically and surgically" is a good point.
> Most ENT's won't touch the medical stuff, but we should give them the
> option.

As a patient, I'm so dog tired of trying to get from docs what they
don't do or offer, so I make sure I know why I'm there first.

>   You have an excellent point, He had a good one too, that we shouldn't
> let them control the agenda and options (try and stop them....)

I stop them routinely.  Screw 'em if they can't take a joke.  ;-D

> Judy
> (My older daughter just called to say she's infected again in the left
[quoted text clipped - 10 lines]
> her and her fiance works as an intern, so she's exposed to all the
> bugs.)

Judy, I wonder if it would also be helpful for her to do what I am about
to; take mold samples from her bathroom and home environment and send
them to be analyzed?  My immunologist is going to desensitize me to
whatever the invisible mold(s) in my bathroom is (are) once I do this,
and he'll do it rapidly.

I'm sorry she's suffering so; when my child was ill with TBDs from 8 to
11 1/2, it was a hundred times more worrisome than being ill myself.

Susan
judy.n - 19 Aug 2006 15:44 GMT
Susan,
 I was going to ask your opinion re: mold. She moved from the toxic
dorm room to a new apartment in June. It has hardwood floors, but is on
the first floor over a musty basement. She has no carpets, uses a HEPA
filter and to the best of her ability keeps her (windowless) bathroom
clean. I know it's not ideal, but it's far better than the dorm. She
gets mold in her shots: I believe three strains of it. The only
upholstered furniture she has is a bed (new and immediately covered)
and a futon couch (new and immediately dust mite covered.) Currently
she runs her air conditioners fairly constantly: they're new as well.
She has a horse and dog at home, but no pet contact at
Brandeis--although she just got a job dog walking...(She's mildly
allergic to dogs, and they're in her shots. We've always had a dog.)
 Her younger sister is going to Brandeis in a week. My husband wanted
to re-use Sara's egg-crate foam for her dorm room, and I told him that
there was no way to detoxify it. Becky isn't as allergic, but has bad
migraine disease, and her share of sinus infections along the way. I
think it's penny wise, pound foolish--wouldn't you agree.
 I agree, having your kids ill is so horrible. We spent two years of
hell after Becky was hospitalized for status migrainous brought on by
the flu (I think she had a touch of encephalitis)--she has a history of
severe migraine associated vertigo, and thank goodness I have a
wonderful otologist at Mass Eye and Ear--Steven Rauch--who could
validate her symptoms (the neurologists at Boston Childrens just didn't
get it). She's much better now, but the experience haunts us.
Judy
> x-no-archive: yes
> \
[quoted text clipped - 50 lines]
>
> Susan
Susan - 19 Aug 2006 15:54 GMT
> Susan,
>   I was going to ask your opinion re: mold. She moved from the toxic
> dorm room to a new apartment in June. It has hardwood floors, but is on
> the first floor over a musty basement.

My guess would be that a) mold is circulating on everything and in the
whole bidg, but then, that's true of the whole world.  Sleeping
quarters, for me, seems to be the biggest management bang for my mold
clearing buck.

She could try wet (vinegar solution) Swiffering the wood floors weekly
at least.  Maybe buy those AirFree sanitizers that seem to actually
clear 85% of mold in a small area within a few weeks, one for each room?
That was my plan for my basement, til the Soleus dehumidifier freed me
of any reaction to it.

 She has no carpets, uses a HEPA
> filter and to the best of her ability keeps her (windowless) bathroom
> clean.

Here's the deal about apparently clean; I start getting mold induced
congestion one or two days after my very zealous cleaning woman has been
here and cleaned the walls and ceilinges with bleach and even a Mr.
Clean eraser sponge.  The mold is invisible, and intensely sinus
congesting.  My bathroom appears to be very clean at all times.  If I
hope out of bed when congested and lightly sponge mop (or, sometimes
spray) the walls, floor and ceiling with bleach solution, my congestion
immediately clears and I know I won't wake with a migraine and vomiting,
as I often did til I began this routine.

 >I know it's not ideal, but it's far better than the dorm. She
> gets mold in her shots: I believe three strains of it.

I'm getting four at present; I can't wait to add whatever is in my
bathroom; I react so much more strongly to it than even to visible,
thick mold like the slick in my mostly underground garage that stinks to
high heaven.  Perhaps your daughter should take samples and find a place
online to send them to?  The one I'm going to use is out of the country
til Sept., but has great instructions for sample collecting:

http://www.inspect-ny.com/sickhouse/bulksamp.htm

Susan

 The only
> upholstered furniture she has is a bed (new and immediately covered)
> and a futon couch (new and immediately dust mite covered.) Currently
[quoted text clipped - 72 lines]
>>
>>Susan
judy.n - 19 Aug 2006 16:05 GMT
Susan,
 Thanks for the advice. I'm going to get a new egg crate also.
 It's a weird lay-out in the apartment, so the bathroom is across the
entire livingroom from the bedroom/next to the kitchen. Little privacy,
but keeps the plumbing areas away from the sleeping quarters.
 The tough part is giving advice at this point: I visited earlier this
week and tried to help her clean and provoked a very angry response.
So, I can suggest, but she has to make her own decisions.
 Yet she calls at 8am to ask what to do about her sinus infection....
 Thanks again, as you have said in the past: we're mold royalty.
Judy

> x-no-archive: yes
>
[quoted text clipped - 119 lines]
> >>
> >>Susan
Susan - 19 Aug 2006 16:11 GMT
> Susan,
>   Thanks for the advice. I'm going to get a new egg crate also.
[quoted text clipped - 3 lines]
>   The tough part is giving advice at this point: I visited earlier this
> week and tried to help her clean and provoked a very angry response.

LOL, I have a 19 y.o.  I know *exactly* what you mean.  :-)

> So, I can suggest, but she has to make her own decisions.
>   Yet she calls at 8am to ask what to do about her sinus infection....
>   Thanks again, as you have said in the past: we're mold royalty.

Yes, that's what comes of being canaries in the mine.

Susan
Susan - 19 Aug 2006 16:06 GMT
>  The only
>
>> upholstered furniture she has is a bed (new and immediately covered)
>> and a futon couch (new and immediately dust mite covered.) Currently
>> she runs her air conditioners fairly constantly: they're new as well.

3M makes allergy filters you can add to your windo ac filter.  I've
found that I have to change them monthly to keep the ac running
efficiently, but they collect a lot of crap, even with my big HEPA
filter going.

>> She has a horse and dog at home, but no pet contact at
>> Brandeis--although she just got a job dog walking...(She's mildly
>> allergic to dogs, and they're in her shots. We've always had a dog.)
>>   Her younger sister is going to Brandeis in a week. My husband wanted
>> to re-use Sara's egg-crate foam for her dorm room, and I told him that
>> there was no way to detoxify it.

Isn't it possible to sanitize it out in the sunlight?  maybe with a
bleach spray, first?  My cleaning woman puts our rubber anti slip mats
out on the deck in the sun.

 Becky isn't as allergic, but has bad
>> migraine disease, and her share of sinus infections along the way. I
>> think it's penny wise, pound foolish--wouldn't you agree.

Yes, if there's any doubt that mold would remain in it.  Unless it's an
expensive natural latex one.  Then I'd try to use sun to de-mold it.
Plus, natural latex is inhospitable to mold and dust mites.

>>   I agree, having your kids ill is so horrible. We spent two years of
>> hell after Becky was hospitalized for status migrainous brought on by
[quoted text clipped - 3 lines]
>> validate her symptoms (the neurologists at Boston Childrens just didn't
>> get it). She's much better now, but the experience haunts us.

Have you all ever been TBD tested?   I know, I know, to a hammer,
everything looks like a nail.

The most important thing you can do when writing a Lyme western blot
slip, btw, is to demand that the lab report all IgG and IgM bands by
number, not just the CDC alleged specific ones.
Some of what they *don't* report are totally specific for B.b., more
than some they *do* report (such as #41, flagellar protein).

I ask because you have horses, dogs, live in a NE coastal state and
because B.b notoriously modulates host immune response, causing many
infected to have Ig subclass abnormalities, chronic sinusitis, etc...
You all may have a hereditary immune defect, but Lyme is well known to
cluster in families due to common environment, too.

Since you can write the orders or have someone else do so, you might
want to consider ordering up anything that could confirm tick exposure:
Lyme wb for IgG, IgM, ehrlichiae, (HME, HGE), bartonella, rickettsia.
Perhaps a Lyme C6 peptide (I was + on this after years of high dose
doxy).  My ID doc thinks highly of Medical Diagnostics Labs. in NJ.  You
can get a mailer kit for testing by them.  My ID doc asked, when I told
him I'd been taking equestrian lessons last year, "now *that's* an
efficient way to collect ticks."

Susan
judy.n - 20 Aug 2006 13:44 GMT
Susan,
 I didn't realize that Lyme could cause IgG deficiencies. I have been
spending a lot of time with the horse until this week, because he had a
foot abscess and needed daily bandaging. He just got new shoes, so I
backed off a few days ago.
Judy
> x-no-archive: yes
>
[quoted text clipped - 61 lines]
>
> Susan
Susan - 20 Aug 2006 14:24 GMT
> Susan,
>   I didn't realize that Lyme could cause IgG deficiencies.

I can't say with certainty that it does, but it's well documented that
it modulates host immunity in a variety of ways.  Many years ago, I had
a Levy panel, an immune function screen by a UCLA researcher created to
examine subclasses in CFS patients.  IgG abnormalities were not
uncommon, and I had some odd findings, myself.

> I have been
> spending a lot of time with the horse until this week, because he had a
> foot abscess and needed daily bandaging. He just got new shoes, so I
> backed off a few days ago.

Judy, an infection can lay dormant for 10 years or more, as mine did.
My husband, with many years of (now documented) B.b expsosure has had
occasional off days and some intense night sweats over the years, but
never become fully symptomatic and has not been treated.  My own wildly
acute illness went dormant between my 1983 hospitalization (neuro wise,
I was severely arthritic for a few more years, but no longer am) and my
1990 onset of disability.  My first acute, crippling arthritic flare
that later went away was in the 70s, 7 years before my last one, onset
in 1983.

It's just something it couldn't hurt to look at.

Susan
Murray Grossan - 20 Aug 2006 02:36 GMT
On 8/19/06 6:09 AM, in article
1155992955.265627.314360@m73g2000cwd.googlegroups.com, "judy.n"

>  Despite daily
> biaxin, singulair, allegra, immunotherapy, nasonex and irrigation
It would be useful to measure the nasal cilia and fix that if indicated.
judy.n - 20 Aug 2006 13:40 GMT
How would you measure nasal cilia clinically?
Judy
> On 8/19/06 6:09 AM, in article
> 1155992955.265627.314360@m73g2000cwd.googlegroups.com, "judy.n"
>
> >  Despite daily
> > biaxin, singulair, allegra, immunotherapy, nasonex and irrigation
>  It would be useful to measure the nasal cilia and fix that if indicated.
Murray Grossan - 19 Aug 2006 16:55 GMT
On 8/19/06 5:04 AM, in article
1155989088.657429.24050@p79g2000cwp.googlegroups.com, "judy.n"

> Susan,
>   I do agree with the arguement that you shouldn't go to a referral ENT
[quoted text clipped - 40 lines]
>>
>> Susan

On the other hand, my wife needed hip surgery, was told so by the best. For
two years we shopped around for physical therapy, etc. Finally she had it
done and we are ever so sorry we wasted those two years
Susan - 19 Aug 2006 17:41 GMT
> On the other hand, my wife needed hip surgery, was told so by the best. For
> two years we shopped around for physical therapy, etc. Finally she had it
> done and we are ever so sorry we wasted those two years

Murray, if we could always predict outcomes!

I'm glad she's well now.  I would've gone the PT route, too, though not
if the first 6 mos. failed to give me the relief I needed.

Susan
Murray Grossan - 19 Aug 2006 16:52 GMT
On 8/18/06 8:50 PM, in article 4kng3mFcf7oeU2@individual.net, "Susan"
<nevermind@nomail.com> wrote:

> I'm wondering why you have inferred that
> they haven't already done so, when it's clear they have.

Again, patients are referred to Tower ENT specifically for surgery and at
least 1/2 end up without surgery, cleared by other means, especially
pulsatile irrigation and proteolytic enzymes..  We are recognized for
Balloon Sinuplasty, Insta Trak , etc. yet even if they come with a surgery
referral, we look at how to make them well. Don't misunderstand, we have a
very full surgery schedule.
Susan - 19 Aug 2006 17:40 GMT
> Again, patients are referred to Tower ENT specifically for surgery and at
> least 1/2 end up without surgery, cleared by other means, especially
> pulsatile irrigation and proteolytic enzymes..  We are recognized for
> Balloon Sinuplasty, Insta Trak , etc. yet even if they come with a surgery
> referral, we look at how to make them well. Don't misunderstand, we have a
> very full surgery schedule.

Point taken, Murray.  But you and your practice are also known for
treatment of sinusitis by alternative means.  Kennedy is not, AFAIK.

Susan
loxaluck - 19 Aug 2006 04:04 GMT
I had heard that he was one of the best and made an appt with his group.
spent a few minutes with a dr. chui who told me he could do nothing for me
surgically and that i should follow up with an allergist.  

allergy testing yielded faintly positives.

subsequent CT scan showed that i am almost completly stuffed in my left
maxillary:

[i]On the current examination, there is near complete opacification of
the
left maxillary sinus, with soft tissue extending into the surgically
created ostium, contiguous with soft tissue density within the left
ethmoid sinuses.
Moderate mucosal thickening is demonstrated involving the floor and
posterior aspect of the left frontal sinus.  There is mild mucosal
thickening involving the floor of the right frontal sinus.
Mild mucousal thickening and opacification of the right ethmoid
sinus.[/i]

and a subsequent ENT and an I-D dr both recommended that i go back there
but i really cant afford these do-nothing visits.  i have decided that i
need to make do for the next few years--expenses are high.

good luck
 
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