If anyone sees an ENT in 4 days

[Guest guest]

I have hesitated to write this, but have decided that now it not the

time to hold anything back. We have an incredible network of

friends across the US and abroad.

Some of you know that I was diagnosed with a nasopharynx mass last

February and it was endoscopically removed, and the biopsy showed

that it was consistent with a " Tornwaldt's cyst. " A very rare

congenital cyst. It was great for about 2 months -- the foul taste

and smell in my mouth went away, I no longer woke up 7-8 times AN

HOUR, I wasn't exhausted all the time, and I didn't have this

horrendous postnasal drip all the time.

Sadly, the last 4 weeks the symptoms came back, and yesterday I

learned that it appeared through the camera that the cyst has grown

back.

I have gone through all the PubMed searches -- this cyst is VERY

rare and I can't find anyting on recurrences. The ENT I used at

UCLA I do not trust -- he concentrates on plastic surgery now and I

just don't have the great feeling.

A local friend got me in with some big wig throat doctor next

Thursday at USC Norris Medical Center. So I am VERY happy about

that.

If any of you have a family friend who is an ENT, or your child is

at the ENT in the next couple of days, would you mind asking if they

know anything about Tornwaldt's cysts and recurrences? I figure it

can't hurt to ask....

Jenn

[Guest guest]

What were your first symptoms, my hubby is having difficulty sleeping and is

tird all the time and has very bad post nasal drip. Just asking?

If anyone sees an ENT in 4 days

I have hesitated to write this, but have decided that now it not the

time to hold anything back. We have an incredible network of

friends across the US and abroad.

Some of you know that I was diagnosed with a nasopharynx mass last

February and it was endoscopically removed, and the biopsy showed

that it was consistent with a " Tornwaldt's cyst. " A very rare

congenital cyst. It was great for about 2 months -- the foul taste

and smell in my mouth went away, I no longer woke up 7-8 times AN

HOUR, I wasn't exhausted all the time, and I didn't have this

horrendous postnasal drip all the time.

Sadly, the last 4 weeks the symptoms came back, and yesterday I

learned that it appeared through the camera that the cyst has grown

back.

I have gone through all the PubMed searches -- this cyst is VERY

rare and I can't find anyting on recurrences. The ENT I used at

UCLA I do not trust -- he concentrates on plastic surgery now and I

just don't have the great feeling.

A local friend got me in with some big wig throat doctor next

Thursday at USC Norris Medical Center. So I am VERY happy about

that.

If any of you have a family friend who is an ENT, or your child is

at the ENT in the next couple of days, would you mind asking if they

know anything about Tornwaldt's cysts and recurrences? I figure it

can't hurt to ask....

Jenn

[Guest guest]

Well, allergies or sinus infections can cause severe post nasal

drip, which can then also interfere with sleeping.

Tornwaldt's cysts are very rare congenital cysts in the nasopharynx,

and even rare still, sometimes they get infected. My symptoms began

with severe postnasal drop, and then the resulting constant waking.

The sleep study found that I was waking 7-8 times AN HOUR. The

other big symptom is a horrendous foul-tasting and foul-smelling

odor that comes from your mouth (it is actually the pus from the

infection in the nasopharynx). I was chewing gum all day long....

I would gag and spit up these dime-sized " scabs " of dried

pus/blood. You asked for the details!!!! I went through this for

something like TWO years.... then after the surgery I was fine for

2 months. Then the last month it came back -- but this time there

is a lot of discomfort and pain in the upper area. So there is

no " waiting " this time. I got an appt with some throat surgeon guru

this Thursday. Will keep you posted.

KIMBERLY - got your voicemail and THANK YOU!!! We printed out Dr.

Wang's info and I may call and get a 3rd opinion from her. Problem

is that she is in the same office as my original surgeon.... so if I

can avoid him knowing that I am getting other opinions,. at least in

the beginning.... Thank you so much, though. Bottom line is that I

should have seen Dr. Wang from the start. Jenn

> What were your first symptoms, my hubby is having difficulty

sleeping and is tird all the time and has very bad post nasal

drip. Just asking?

>

>

>

> If anyone sees an ENT in 4 days

>

>

> I have hesitated to write this, but have decided that now it not

the

> time to hold anything back. We have an incredible network of

> friends across the US and abroad.

>

> Some of you know that I was diagnosed with a nasopharynx mass last

> February and it was endoscopically removed, and the biopsy showed

> that it was consistent with a " Tornwaldt's cyst. " A very rare

> congenital cyst. It was great for about 2 months -- the foul

taste

> and smell in my mouth went away, I no longer woke up 7-8 times AN

> HOUR, I wasn't exhausted all the time, and I didn't have this

> horrendous postnasal drip all the time.

>

> Sadly, the last 4 weeks the symptoms came back, and yesterday I

> learned that it appeared through the camera that the cyst has

grown

> back.

>

> I have gone through all the PubMed searches -- this cyst is VERY

> rare and I can't find anyting on recurrences. The ENT I used at

> UCLA I do not trust -- he concentrates on plastic surgery now and

I

> just don't have the great feeling.

>

> A local friend got me in with some big wig throat doctor next

> Thursday at USC Norris Medical Center. So I am VERY happy about

> that.

>

> If any of you have a family friend who is an ENT, or your child is

> at the ENT in the next couple of days, would you mind asking if

they

> know anything about Tornwaldt's cysts and recurrences? I figure

it

> can't hurt to ask....

>

> Jenn

>

>

>

>

>

>

>

[Guest guest]

Dr. Micheal Cunningham at mass eye and ear in Boston has heard of it. He is a

Pedi ENT but you can call him.

Brock wrote:I have hesitated to write this,

but have decided that now it not the

time to hold anything back. We have an incredible network of

friends across the US and abroad.

Some of you know that I was diagnosed with a nasopharynx mass last

February and it was endoscopically removed, and the biopsy showed

that it was consistent with a " Tornwaldt's cyst. " A very rare

congenital cyst. It was great for about 2 months -- the foul taste

and smell in my mouth went away, I no longer woke up 7-8 times AN

HOUR, I wasn't exhausted all the time, and I didn't have this

horrendous postnasal drip all the time.

Sadly, the last 4 weeks the symptoms came back, and yesterday I

learned that it appeared through the camera that the cyst has grown

back.

I have gone through all the PubMed searches -- this cyst is VERY

rare and I can't find anyting on recurrences. The ENT I used at

UCLA I do not trust -- he concentrates on plastic surgery now and I

just don't have the great feeling.

A local friend got me in with some big wig throat doctor next

Thursday at USC Norris Medical Center. So I am VERY happy about

that.

If any of you have a family friend who is an ENT, or your child is

at the ENT in the next couple of days, would you mind asking if they

know anything about Tornwaldt's cysts and recurrences? I figure it

can't hurt to ask....

Jenn

---------------------------------

[Guest guest]

Hi ,

Sorry to hear that you are having this problem. It must have been

very discouraging when you realized that this cyst was back.

I sincerely hope you can get this resolved once and for all.

Please let us know what happens.

Ken M

> I have hesitated to write this, but have decided that now it not

the

> time to hold anything back. We have an incredible network of

> friends across the US and abroad.

>

> Some of you know that I was diagnosed with a nasopharynx mass last

> February and it was endoscopically removed, and the biopsy showed

> that it was consistent with a " Tornwaldt's cyst. " A very rare

> congenital cyst. It was great for about 2 months -- the foul taste

> and smell in my mouth went away, I no longer woke up 7-8 times AN

> HOUR, I wasn't exhausted all the time, and I didn't have this

> horrendous postnasal drip all the time.

>

> Sadly, the last 4 weeks the symptoms came back, and yesterday I

> learned that it appeared through the camera that the cyst has grown

> back.

>

> I have gone through all the PubMed searches -- this cyst is VERY

> rare and I can't find anyting on recurrences. The ENT I used at

> UCLA I do not trust -- he concentrates on plastic surgery now and I

> just don't have the great feeling.

>

> A local friend got me in with some big wig throat doctor next

> Thursday at USC Norris Medical Center. So I am VERY happy about

> that.

>

> If any of you have a family friend who is an ENT, or your child is

> at the ENT in the next couple of days, would you mind asking if

they

> know anything about Tornwaldt's cysts and recurrences? I figure it

> can't hurt to ask....

>

> Jenn

[Guest guest]

Hi Jenn,

Unfortunately for you this was not one of the 15 times we have seen

the ENT in the past few months. However, I do have a fax in to her

asking for a reference for you. I will follow up with a call, she

told me her office is terrible about getting messages to her (and out

of all DR. offices, this is the one I had - a bu nch of old biddies

who always snip at you about referrals etc).

> > I have hesitated to write this, but have decided that now it not

> the

> > time to hold anything back. We have an incredible network of

> > friends across the US and abroad.

> >

> > Some of you know that I was diagnosed with a nasopharynx mass

last

> > February and it was endoscopically removed, and the biopsy showed

> > that it was consistent with a " Tornwaldt's cyst. " A very rare

> > congenital cyst. It was great for about 2 months -- the foul

taste

> > and smell in my mouth went away, I no longer woke up 7-8 times AN

> > HOUR, I wasn't exhausted all the time, and I didn't have this

> > horrendous postnasal drip all the time.

> >

> > Sadly, the last 4 weeks the symptoms came back, and yesterday I

> > learned that it appeared through the camera that the cyst has

grown

> > back.

> >

> > I have gone through all the PubMed searches -- this cyst is VERY

> > rare and I can't find anyting on recurrences. The ENT I used at

> > UCLA I do not trust -- he concentrates on plastic surgery now and

I

> > just don't have the great feeling.

> >

> > A local friend got me in with some big wig throat doctor next

> > Thursday at USC Norris Medical Center. So I am VERY happy about

> > that.

> >

> > If any of you have a family friend who is an ENT, or your child

is

> > at the ENT in the next couple of days, would you mind asking if

> they

> > know anything about Tornwaldt's cysts and recurrences? I figure

it

> > can't hurt to ask....

> >

> > Jenn

[Guest guest]

Thank you, Marcy! I am seeing a guy in 3 days -- crossing my

fingers. The question becomes how to get the surgery done in the

four weeks before the convention, while I am also coaching our

town's 9-year-old All Star softball team ( was chosen for

it). The district tournament is the weekend before we leave for the

convention.... Ugh.... overcommitment anyone??? Jenn

I have hesitated to write

this, but have decided that now it not the

> time to hold anything back. We have an incredible network of

> friends across the US and abroad.

>

> Some of you know that I was diagnosed with a nasopharynx mass last

> February and it was endoscopically removed, and the biopsy showed

> that it was consistent with a " Tornwaldt's cyst. " A very rare

> congenital cyst. It was great for about 2 months -- the foul

taste

> and smell in my mouth went away, I no longer woke up 7-8 times AN

> HOUR, I wasn't exhausted all the time, and I didn't have this

> horrendous postnasal drip all the time.

>

> Sadly, the last 4 weeks the symptoms came back, and yesterday I

> learned that it appeared through the camera that the cyst has

grown

> back.

>

> I have gone through all the PubMed searches -- this cyst is VERY

> rare and I can't find anyting on recurrences. The ENT I used at

> UCLA I do not trust -- he concentrates on plastic surgery now and

I

> just don't have the great feeling.

>

> A local friend got me in with some big wig throat doctor next

> Thursday at USC Norris Medical Center. So I am VERY happy about

> that.

>

> If any of you have a family friend who is an ENT, or your child is

> at the ENT in the next couple of days, would you mind asking if

they

> know anything about Tornwaldt's cysts and recurrences? I figure

it

> can't hurt to ask....

>

> Jenn

>

>

>

>

>

> ---------------------------------

>

[Guest guest]

Good luck. I hear you with over load. Just take care of your self and the rest

will come.

Brock wrote:

Thank you, Marcy! I am seeing a guy in 3 days -- crossing my

fingers. The question becomes how to get the surgery done in the

four weeks before the convention, while I am also coaching our

town's 9-year-old All Star softball team ( was chosen for

it). The district tournament is the weekend before we leave for the

convention.... Ugh.... overcommitment anyone??? Jenn

I have hesitated to write

this, but have decided that now it not the

> time to hold anything back. We have an incredible network of

> friends across the US and abroad.

>

> Some of you know that I was diagnosed with a nasopharynx mass last

> February and it was endoscopically removed, and the biopsy showed

> that it was consistent with a " Tornwaldt's cyst. " A very rare

> congenital cyst. It was great for about 2 months -- the foul

taste

> and smell in my mouth went away, I no longer woke up 7-8 times AN

> HOUR, I wasn't exhausted all the time, and I didn't have this

> horrendous postnasal drip all the time.

>

> Sadly, the last 4 weeks the symptoms came back, and yesterday I

> learned that it appeared through the camera that the cyst has

grown

> back.

>

> I have gone through all the PubMed searches -- this cyst is VERY

> rare and I can't find anyting on recurrences. The ENT I used at

> UCLA I do not trust -- he concentrates on plastic surgery now and

I

> just don't have the great feeling.

>

> A local friend got me in with some big wig throat doctor next

> Thursday at USC Norris Medical Center. So I am VERY happy about

> that.

>

> If any of you have a family friend who is an ENT, or your child is

> at the ENT in the next couple of days, would you mind asking if

they

> know anything about Tornwaldt's cysts and recurrences? I figure

it

> can't hurt to ask....

>

> Jenn

>

>

>

>

>

> ---------------------------------

>