Update After 4th Surgery

[Guest guest]

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