Re: Update After 4th Surgery

[Guest guest]

Mal,

I wish you the best outcome and a full recovery.

What you are going through is why it is important for us, as patients, to become

as educated as we can. As you point out, we cannot always depend on our doctors

to recognize everything that affects those of us with Samter's. I have an

Internist as a primary, along with a rheumatologist, an ENT, and an allergist.

Both my Internist and Rheumatologists do regular blood tests and I make sure

that all of my doctors are communicating with each other. I recently had major

back surgery to bolt my spine back together. I would not let the surgeon do

anything until he communicated with my other doctors to insure that he knew what

he was getting into since I cannot take any anti-inflammatory drugs.

In any case, the point is, we have to be very proactive with our condition,

especially when dealing with a doctor that may not be well versed in Samter's.

Ron

>

> Thanks again everyone for the positive wishes and suggestions!

>

> So I had a very successful 4th surgery at Stanford performed by the kind Dr.

Hwang. Based on my CT scan done the day prior to my surgery, my maxillary

sinuses (cheeks) were still pretty clear from my last surgery, so most of my

polyps were in my sphenoid, ethmoid, and frontal sinuses.

>

> While at Stanford, Dr. Hwang noticed on my blood work for the past month that

my eosinophil count was abnormally high. For those who are not aware,

eosinophils are a type of white blood cells that combat infections and

parasites. Normally, eosinophils counts are 1 to 8. On my blood tests I had

counts ranging from 23 to 31. He also noted from my past hospital stay back in

February I had a fever of 103 degrees and that even the most chronic sinus

infection does not cause a fever.

>

> Within minutes of seeing this, Dr. Hwang asked me if I had ever been tested

for Churg Strauss syndrome, an auto-immune disease. Of course, I haven't and

had no idea what he was talking about. He then told me that essentially, he

could continue to do sinus surgeries on me however, he believed that due to my

eosinophil count being so high he felt my constant sinus issues were indicative

of something else occurring in my body. He then urged me that day, and three

more times the day of my surgery, to get tested for Churg Strauss as soon as I

got home. I then had a follow up/post-op appointment with my local ENT (Dr.

Terrance Kwiatkowski) here in Las Vegas 4 days after my surgery. Dr.

Kwiatkowski had spoken to Dr. Hwang and they both were concerned with my

eosinophil count being so high. As Dr. Kwiatkowski said, " Churg Strauss is not

common. It's something you read in medical school once in a textbook and never

hear about it again. But you are not a common patient. "

>

> In a nutshell, Churg Strauss has three stages and there are 6 criteria used to

classify if someone has it.

>

> The first stage begins with the onset of allergies to things in which one has

not been allergic to before and constant sinus issues. The second stage is the

development or worsening of asthma. That last and final stage is vasculitis,

which involves most organs (skin, lungs, kidneys, nerves). Vasculitis is the

destruction of blood vessels, i.e. organ failure.

>

> The six criterias of Churg Strauss are:

> 1. asthma

> 2. eosinophilia [>10% on differential white blood cell count]

> 3. mononeuropathy

> 4. transient pulmonary infiltrates on chest X-rays

> 5. paranasal sinus abnormalities

> 6. biopsy containing a blood vessel with extravascular eosinophils

>

> One has Churg Strauss if they exhibit 4 of the 6 criteria. So far I have 3.

With the urging of my doctors I have an appointment with a local rheumatologist

however he does not have an available appointment until April 11. So the

waiting game continues.

>

> In the meantime, I am on 20 mg of prednisone daily for almost 30 days now, 750

mg of levaquin daily, and tobramyacin via PIC line until next week. Based on my

biopsy from my surgery, my pseudomonas is still colonizing, hence why I am still

on tobramyacin. I was told to stop baby shampoo as it has not helped and the

belief is that something else is going on beyond the bacteria in my sinuses.

>

> Lastly, I'd like to point out I'm a bit pissed that my infectious disease

doctor who orders my blood work on a weekly basis noticed my eosinophils were

high as well but doesn't think much of it. I proceeded to ask her then why I

keep getting sick and have had 4 surgeries, blah, blah, blah. She then

stammered, " well the pseudomonas doesn't help and you have really bad

allergies. " While it isn't certain I have Churg Strauss, I find it annoying I

had to go all the way to Stanford for another doctor to look at another doctor's

blood work report to point these things out. Essentially, I will be looking for

another infectious doctor moving forward.

>

> In the meantime, I am happy I had a successful surgery and am feeling good

right now. I know whether it's found I have Churg Strauss or not, the polyps

will be back one day. Until then, it's nice to be breathing a bit better and to

smell everything.

>

> If anyone has any suggestions, comments, etc. please share. I always

appreciate you all as an outlet to just vent as most people don't understand

these frustrations.

>

> Best,

>

> Mal

>

[Guest guest]

Yes, Mal, good luck. I also had extremely high eosinophil counts for some months following surgery, and both my doctor and I suspected Churg Strauss. Fortunately each time the eosinophils were elevated, prednisone and antibiotics brought my count down and I think they were associated with infection. I also had at least three of the symptoms, but fortunately in my case it did not develop into Churg Strauss and these days I am relatively well, though due for an eosinophil check.

Mal,

I wish you the best outcome and a full recovery.

What you are going through is why it is important for us, as patients, to become as educated as we can. As you point out, we cannot always depend on our doctors to recognize everything that affects those of us with Samter's. I have an Internist as a primary, along with a rheumatologist, an ENT, and an allergist. Both my Internist and Rheumatologists do regular blood tests and I make sure that all of my doctors are communicating with each other. I recently had major back surgery to bolt my spine back together. I would not let the surgeon do anything until he communicated with my other doctors to insure that he knew what he was getting into since I cannot take any anti-inflammatory drugs.

In any case, the point is, we have to be very proactive with our condition, especially when dealing with a doctor that may not be well versed in Samter's.

Ron

>

> Thanks again everyone for the positive wishes and suggestions!

>

> So I had a very successful 4th surgery at Stanford performed by the kind Dr. Hwang. Based on my CT scan done the day prior to my surgery, my maxillary sinuses (cheeks) were still pretty clear from my last surgery, so most of my polyps were in my sphenoid, ethmoid, and frontal sinuses.

>

> While at Stanford, Dr. Hwang noticed on my blood work for the past month that my eosinophil count was abnormally high. For those who are not aware, eosinophils are a type of white blood cells that combat infections and parasites. Normally, eosinophils counts are 1 to 8. On my blood tests I had counts ranging from 23 to 31. He also noted from my past hospital stay back in February I had a fever of 103 degrees and that even the most chronic sinus infection does not cause a fever.

>

> Within minutes of seeing this, Dr. Hwang asked me if I had ever been tested for Churg Strauss syndrome, an auto-immune disease. Of course, I haven't and had no idea what he was talking about. He then told me that essentially, he could continue to do sinus surgeries on me however, he believed that due to my eosinophil count being so high he felt my constant sinus issues were indicative of something else occurring in my body. He then urged me that day, and three more times the day of my surgery, to get tested for Churg Strauss as soon as I got home. I then had a follow up/post-op appointment with my local ENT (Dr. Terrance Kwiatkowski) here in Las Vegas 4 days after my surgery. Dr. Kwiatkowski had spoken to Dr. Hwang and they both were concerned with my eosinophil count being so high. As Dr. Kwiatkowski said, "Churg Strauss is not common. It's something you read in medical school once in a textbook and never hear about it again. But you are not a common

patient."

>

> In a nutshell, Churg Strauss has three stages and there are 6 criteria used to classify if someone has it.

>

> The first stage begins with the onset of allergies to things in which one has not been allergic to before and constant sinus issues. The second stage is the development or worsening of asthma. That last and final stage is vasculitis, which involves most organs (skin, lungs, kidneys, nerves). Vasculitis is the destruction of blood vessels, i.e. organ failure.

>

> The six criterias of Churg Strauss are:

> 1. asthma

> 2. eosinophilia [>10% on differential white blood cell count]

> 3. mononeuropathy

> 4. transient pulmonary infiltrates on chest X-rays

> 5. paranasal sinus abnormalities

> 6. biopsy containing a blood vessel with extravascular eosinophils

>

> One has Churg Strauss if they exhibit 4 of the 6 criteria. So far I have 3. With the urging of my doctors I have an appointment with a local rheumatologist however he does not have an available appointment until April 11. So the waiting game continues.

>

> In the meantime, I am on 20 mg of prednisone daily for almost 30 days now, 750 mg of levaquin daily, and tobramyacin via PIC line until next week. Based on my biopsy from my surgery, my pseudomonas is still colonizing, hence why I am still on tobramyacin. I was told to stop baby shampoo as it has not helped and the belief is that something else is going on beyond the bacteria in my sinuses.

>

> Lastly, I'd like to point out I'm a bit pissed that my infectious disease doctor who orders my blood work on a weekly basis noticed my eosinophils were high as well but doesn't think much of it. I proceeded to ask her then why I keep getting sick and have had 4 surgeries, blah, blah, blah. She then stammered, "well the pseudomonas doesn't help and you have really bad allergies." While it isn't certain I have Churg Strauss, I find it annoying I had to go all the way to Stanford for another doctor to look at another doctor's blood work report to point these things out. Essentially, I will be looking for another infectious doctor moving forward.

>

> In the meantime, I am happy I had a successful surgery and am feeling good right now. I know whether it's found I have Churg Strauss or not, the polyps will be back one day. Until then, it's nice to be breathing a bit better and to smell everything.

>

> If anyone has any suggestions, comments, etc. please share. I always appreciate you all as an outlet to just vent as most people don't understand these frustrations.

>

> Best,

>

> Mal

>

[Guest guest]

Thanks for such an informative posting.

For almost twenty years my EOS had been over 10 and my doctor would just

tell me that the high level was caused from my allergies. After doing a lot

of research on EOS and effects on our body, I made an assumption that

instead of my high EOS being caused by my allergies, that it was actually

the high EOS that was causing my allergies and polyps.

About three years ago I had a snoot full of polyps and was preparing for

another surgery. But by lowering my EOS to the 2 to 4 range my polyps have

dramatically reduced in quantity and size to the point were surgery was no

longer required. Currently I do not have any problems breathing, but still

no sense of smell.

Maybe in addition to looking for a new infectious doctor you may also want

to consider a blood disorders doctor who may be able to more accurately

address your high EOS level.

Update After 4th Surgery

Thanks again everyone for the positive wishes and suggestions!

So I had a very successful 4th surgery at Stanford performed by the kind Dr.

Hwang. Based on my CT scan done the day prior to my surgery, my

maxillary sinuses (cheeks) were still pretty clear from my last surgery, so

most of my polyps were in my sphenoid, ethmoid, and frontal sinuses.

While at Stanford, Dr. Hwang noticed on my blood work for the past month

that my eosinophil count was abnormally high. For those who are not aware,

eosinophils are a type of white blood cells that combat infections and

parasites. Normally, eosinophils counts are 1 to 8. On my blood tests I

had counts ranging from 23 to 31. He also noted from my past hospital stay

back in February I had a fever of 103 degrees and that even the most chronic

sinus infection does not cause a fever.

Within minutes of seeing this, Dr. Hwang asked me if I had ever been tested

for Churg Strauss syndrome, an auto-immune disease. Of course, I haven't

and had no idea what he was talking about. He then told me that

essentially, he could continue to do sinus surgeries on me however, he

believed that due to my eosinophil count being so high he felt my constant

sinus issues were indicative of something else occurring in my body. He

then urged me that day, and three more times the day of my surgery, to get

tested for Churg Strauss as soon as I got home. I then had a follow

up/post-op appointment with my local ENT (Dr. Terrance Kwiatkowski) here in

Las Vegas 4 days after my surgery. Dr. Kwiatkowski had spoken to Dr. Hwang

and they both were concerned with my eosinophil count being so high. As Dr.

Kwiatkowski said, " Churg Strauss is not common. It's something you read in

medical school once in a textbook and never hear about it again. But you

are not a common patient. "

In a nutshell, Churg Strauss has three stages and there are 6 criteria used

to classify if someone has it.

The first stage begins with the onset of allergies to things in which one

has not been allergic to before and constant sinus issues. The second stage

is the development or worsening of asthma. That last and final stage is

vasculitis, which involves most organs (skin, lungs, kidneys, nerves).

Vasculitis is the destruction of blood vessels, i.e. organ failure.

The six criterias of Churg Strauss are:

1. asthma

2. eosinophilia [>10% on differential white blood cell count]

3. mononeuropathy

4. transient pulmonary infiltrates on chest X-rays

5. paranasal sinus abnormalities

6. biopsy containing a blood vessel with extravascular eosinophils

One has Churg Strauss if they exhibit 4 of the 6 criteria. So far I have 3.

With the urging of my doctors I have an appointment with a local

rheumatologist however he does not have an available appointment until April

11. So the waiting game continues.

In the meantime, I am on 20 mg of prednisone daily for almost 30 days now,

750 mg of levaquin daily, and tobramyacin via PIC line until next week.

Based on my biopsy from my surgery, my pseudomonas is still colonizing,

hence why I am still on tobramyacin. I was told to stop baby shampoo as it

has not helped and the belief is that something else is going on beyond the

bacteria in my sinuses.

Lastly, I'd like to point out I'm a bit pissed that my infectious disease

doctor who orders my blood work on a weekly basis noticed my eosinophils

were high as well but doesn't think much of it. I proceeded to ask her then

why I keep getting sick and have had 4 surgeries, blah, blah, blah. She then

stammered, " well the pseudomonas doesn't help and you have really bad

allergies. " While it isn't certain I have Churg Strauss, I find it annoying

I had to go all the way to Stanford for another doctor to look at another

doctor's blood work report to point these things out. Essentially, I will

be looking for another infectious doctor moving forward.

In the meantime, I am happy I had a successful surgery and am feeling good

right now. I know whether it's found I have Churg Strauss or not, the

polyps will be back one day. Until then, it's nice to be breathing a bit

better and to smell everything.

If anyone has any suggestions, comments, etc. please share. I always

appreciate you all as an outlet to just vent as most people don't understand

these frustrations.

Best,

Mal

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

[Guest guest]

Mal,

Hasn't Dr. Hwang cultured the pseudomonas and tested it against a panel of

antibiotics ? Have you seen any antibiogram results, and what did they say about

the sensitivity of the germs ?

Singulair or equivalent drugs are among the suspects in a number of

Churg-Strauss-Syndrome cases. In such cases, discontinuing the antileukotriene

or reducing the aspirin desense dose lowers the eosinophils. Prednisone is

generally used to reduce the eosinophils. Some members here have also had good

results in reducing the eosinophils with vitamin B3 (niacin, take the non-flush

version). Also check that you do not have any parasite or helminth infection,

which usually increase the eosinophils.

> > >

> > > Thanks again everyone for the positive wishes and suggestions!

> > >

> > > So I had a very successful 4th surgery at Stanford performed by the kind

Dr. Hwang. Based on my CT scan done the day prior to my surgery, my

maxillary sinuses (cheeks) were still pretty clear from my last surgery, so most

of my polyps were in my sphenoid, ethmoid, and frontal sinuses.

> > >

> > > While at Stanford, Dr. Hwang noticed on my blood work for the past month

that my eosinophil count was abnormally high. For those who are not aware,

eosinophils are a type of white blood cells that combat infections and

parasites. Normally, eosinophils counts are 1 to 8. On my blood tests I had

counts ranging from 23 to 31. He also noted from my past hospital stay back in

February I had a fever of 103 degrees and that even the most chronic sinus

infection does not cause a fever.

> > >

> > > Within minutes of seeing this, Dr. Hwang asked me if I had ever been

tested for Churg Strauss syndrome, an auto-immune disease. Of course, I haven't

and had no idea what he was talking about. He then told me that essentially, he

could continue to do sinus surgeries on me however, he believed that due to my

eosinophil count being so high he felt my constant sinus issues were indicative

of something else occurring in my body. He then urged me that day, and three

more times the day of my surgery, to get tested for Churg Strauss as soon as I

got home. I then had a follow up/post-op appointment with my local ENT (Dr.

Terrance Kwiatkowski) here in Las Vegas 4 days after my surgery. Dr. Kwiatkowski

had spoken to Dr. Hwang and they both were concerned with my eosinophil count

being so high. As Dr. Kwiatkowski said, " Churg Strauss is not common. It's

something you read in medical school once in a textbook and never hear about it

again. But you are not a common patient. "

> > >

> > > In a nutshell, Churg Strauss has three stages and there are 6 criteria

used to classify if someone has it.

> > >

> > > The first stage begins with the onset of allergies to things in which one

has not been allergic to before and constant sinus issues. The second stage is

the development or worsening of asthma. That last and final stage is vasculitis,

which involves most organs (skin, lungs, kidneys, nerves). Vasculitis is the

destruction of blood vessels, i.e. organ failure.

> > >

> > > The six criterias of Churg Strauss are:

> > > 1. asthma

> > > 2. eosinophilia [>10% on differential white blood cell count]

> > > 3. mononeuropathy

> > > 4. transient pulmonary infiltrates on chest X-rays

> > > 5. paranasal sinus abnormalities

> > > 6. biopsy containing a blood vessel with extravascular eosinophils

> > >

> > > One has Churg Strauss if they exhibit 4 of the 6 criteria. So far I have

3. With the urging of my doctors I have an appointment with a local

rheumatologist however he does not have an available appointment until April 11.

So the waiting game continues.

> > >

> > > In the meantime, I am on 20 mg of prednisone daily for almost 30 days now,

750 mg of levaquin daily, and tobramyacin via PIC line until next week. Based on

my biopsy from my surgery, my pseudomonas is still colonizing, hence why I am

still on tobramyacin. I was told to stop baby shampoo as it has not helped and

the belief is that something else is going on beyond the bacteria in my sinuses.

> > >

> > > Lastly, I'd like to point out I'm a bit pissed that my infectious disease

doctor who orders my blood work on a weekly basis noticed my eosinophils were

high as well but doesn't think much of it. I proceeded to ask her then why I

keep getting sick and have had 4 surgeries, blah, blah, blah. She then

stammered, " well the pseudomonas doesn't help and you have really bad

allergies. " While it isn't certain I have Churg Strauss, I find it annoying I

had to go all the way to Stanford for another doctor to look at another doctor's

blood work report to point these things out. Essentially, I will be looking for

another infectious doctor moving forward.

> > >

> > > In the meantime, I am happy I had a successful surgery and am feeling good

right now. I know whether it's found I have Churg Strauss or not, the polyps

will be back one day. Until then, it's nice to be breathing a bit better and to

smell everything.

> > >

> > > If anyone has any suggestions, comments, etc. please share. I always

appreciate you all as an outlet to just vent as most people don't understand

these frustrations.

> > >

> > > Best,

> > >

> > > Mal

> > >

> >

> >

>