orbital psuedotumor of the eye

[Mark956]

I have been diagnosed with orbital psuedo tumor for the second time. It is a remission of what i had 5 years ago, it started 5 years ago when i cleaned the boat with a pressure washer and something shot into my eye and the next day it was real infected. It grows at a very rapid rate to a bull blown eye swelling with jellylike film covering the whites of your eye, except for the pupil and needed to be treated at the hospital the first time under IV with anitbiotics and steroids and I mean huge amounts of it. First my eye doctor saw me before i was admitted a week later, he gave me a cream at first and did not work and 12 hours later he had to give me a steroid injection in the butt and it would go away in 6-7 hours completely but to return in 18 hours and the same injection process with oral steroids all over again four more times in four days and had to be admitted to the hospital. after i healed, I still had a cyst like tumor in the corner of the eye where the gland is and it remained ther for 5 years. I had the remission  a few days ago and my first doctor refused to treat me and had to look elsewhere and found some but they had no knowledge of how to treat it and found one specialist  two days later and the eye was already full blown and deformed my flesh holding the eyeball and jellylike film is sticking out about almost half an inch out and cystlike sac had swelled so much that it is outside the eye and the eye specialist treated me with some oral steroids and anitbiotics and still recuperating in bed as I am writing this.
I like some information on how to treat this problem permanently and not to have this remission again. My doctor says it is orbital psuedotumor and has no cure as of now. Couyd someone  please help me with some information on this chronic problem and it can be cured. Thank you and God Bless.
Mark

[John C Hagan]

You should be under the care of an oculoplastic surgeon. The treatment is steroids increasingly those that injected behind the eye. Often a biopsy is recommended. Much is unknown. May persist or may go away at any time. Your story is typical of this miserable problem.  You may want to go to a medical school department of ophthalmology. Again at some point they should make an effort to get a tissue diagnosis.

JcH IIIMC

[Mark956]

Will a culture swab of the infected eye tell if it is bacterial , viral or fungal be sufficient enough or is a removal of a tissue needed for the tissue diagnosis?

How is it injected behind the eye? Is it painful and how often is it done?

My eye specialist recommended that after I heal he will prescribe me the same meds to keep in case it flares up again sooner or later during the years but I think that I will ask him that I will keep the prescription until it flares and I get the meds because if it flares up years from now, the meds may be out of date and old meds tend not to be as effective as fresh meds, am I correct?

Another thing, he also mentioned that the cystlike sac that is in the corner of the eye, not the nose side of the eye but the temple side,,,,it looks  like a oversized sac after the first heal if you compare it to the normal eye by pulling the flesh on the corner of the eye and you can see the tiny saclike gland,,,,he mentioned that he will not removed the oversized saclike gland after it healed the first time because if he removes it, the eye dries up and dies, is that true?   I thought that if he removes it, I will not get this problem the second time.

What would be the trigger to start the flare up?

Please bear with me with these questions. Thanks for the response.
Mark

[John C Hagan]

1. When I say you need a tissue diagnosis I'm talking about a biopsy of the inflammed material behind your eye.

2. The shots called a peribulbar or retrobulbar injection are given through needles that are inserted through the lids. Yes they are painful/uncomfortable. How often its done varies from person to person an average might be once every couple of months.

3. You should discuss therapy for flare ups with your MD.

4. The cause of flare ups is unknown.

5. Sounds like you're talking about the lacrimal gland and that is not removed.

JCH III MD

[Mark956]

Would you recommend to remove the lacrimal gland? What happens when it is removed and its functions?

The inflammed material starts where the gland is in the corner of the eye, it swells up and starts to infect the eye. Does your #1 statement as behind the eye relate to my problem? Thanks

[John C Hagan]

1. That is up to your Eye MD. Usually its not removed.
2. Yes, generally a biospy of the tissue behind the eye is appropriate.

JCH III MD

[Beth101]

Mark, I'm reading this because my orbital pseudotumor is starting to flare up again after having been quiet for about 6 months. I thought that your power washer story was interesting, I believe my condition started after a mosquito flew in my eye and I could feel it but I couldn't get it out. My doctor wanted to give me a steroid injection directly behind my eye, he said it was easy and much preferable to oral steroids because it targeted the affected area and allowed one to avoid oral steroids. I ended up being unable to have the shot because it was discovered that I was a "steroid responder" , so I went on 2 rounds of steroid tapers, both starting at 80mgs. I hoped this was gone but it's starting up with the pain and swelling today. I took some of my leftover steroid and pressure drops and I'm going to make some tea. I'm very sorry to read about your situation, I'm not overly religious but I'm going to say a prayer for you anyway. Good Luck and hang in there. Beth

[John C Hagan III, MD, FACS]

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[Mark956]

Hello Beth, Let me ask, did the mosquito fly in your eye at a high rate of speed that it may have gone behind your eye or out of view?

My blood pressure have gone up dramatically to about 169/90 at times and as low as 150/85. Does the steroids have anything to do with that? Doc says it is normal for the spike and I have gained some weight from the steroids. Does that apply to you too? Thanks, hope you feel better, I know the pressure is awful., Mark

[John C Hagan III, MD, FACS]

Beth it is impossible for a mosquito to cause a case of orbital pseudo-tumor. PERIOD.

No matter how fast the inset was going it would not penetrate the conjunctiva. Orbital pseudotumor is NOT more common in areas with mosquito infestations.

We don't know many things about OPT but we do know it is not causes by insects.

JCH IIIMD

[Beth101]

Hi Mark, This morning my eye was swollen, but the weird thing was that I couldn't see clearly out of it, everything was foggy out of that eye. I waited an hour and a half but it didn't clear up so I called my doctor and he sent me to the ER. They did a cat scan and didn't see anything there or in the exam that would account for the vision problem, so they put me back on Lotemax drops(low intensity steroids) and it seems to be getting better and I can see normally. This is the second outbreak, the first one in Aug. '06 was horrible, my eye was sticking out of my head like a halloween mask by the time I was properly diagnosed and I couldn't go a few hours without vicodin. I was on steroid pills for about 7 months, then drops. The pills made me edgy and crazy and my heart