orbital psuedotumor of the eye

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, FAAO]

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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, FAAO]

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 would pound hard for no reason. I also gained twenty pounds on those things This time the whole orbital psuedo tumor thing seems to be subsiding( I hope) before it really went through the horrible part, maybe that's because I had the steroid drops on hand this time ( they weren't expired yet) and used them right away when I first felt it acting up. I really want to focus on strengthening my immune system from now on, I guess yoga and yogurt are in my future. According to my doctor this is an autoimmine disease and my body is under the impression tht my eyeball is a foreign invader and is fighting it as such. Stress can worsen this condition. I don't know if my blood pressure ever spiked when I was on the pills, the doctors never said anything. They were however concerned about my eye pressure, I think around 17 is OK, sometimes I'd come in and it was 35 and they seemed nervous about that, the first steroid drops were too much for me,(steroid responder), the lotemax drops caused less eye pressure spikes. I wish I could take the shot, It's time released with steriods so it lasts for a long time and it's supposedly easier to tolerate than oral steroids and has less side effects. I hope your eye is calming down. -Beth

[Beth101]

Mark, One more thing, you talk about "jelly like film" on your eye. That is the regular membrane on the surface of your eye that's always there, it just gets inflamed and full of fluids and looks like jelly when an outbreak hits. Mine looked like a giant gob of vaseline. Pretty!!  I just asked the nurse at the ER today the proper name for it, but I can't remember her answer. -Beth

[Beth101]

Thank you for your mosquito opinion, my doctor doesn't buy my theory either, but I am still VERY SUSPICIOUS. It seems to be too much of a coincidence. -Beth

[John C Hagan III, MD, FACS, FAAO]

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[Mark956]

It started with a jellylike film the first day, and after about 36 hours, it is thick like you described" a gob of Vaseline". It was scary to me when I looked at myself in the mirror. The flesh that surrounds the eye looked deformed and streched beyond imagination. The little gland like sac in the corner of the eye had swelled bigger than the size of a pea and popped out of the corner of the eye and was outside the eye with the "Vaseline". Gross, when I went to see the 6th doc,  I asked the receptionist that it was an emergency and need to see the doc fast, there were about 30 patients in the waiting room, gosh, she told me to sit down and wait for my name to be called and I sat down but got up after 10 minutes because the pain is unbearable and I was not under any pain meds for the pain. I went up to the same receptionist and told her again and she kind of looked irate and I just took off my sunglasses and she saw the OPT and she looked like she was going to faint, haha, she got up and went out back and came back and sent me on my way to the doc's office. Groovy.
The Lotemax drops did not work for me and that the fifth eye specialist presribed me some Prednisone and Cephalexin to work on the OPT. It got better but I still have the litle sac looking glandlike thing in the corner of the eye that looks bigger than normal. doc precribed me the extra meds in case it feels like it flares up again and take the meds right away. I really feel for you that it takes so long to take care of the swelling and especially the problem.
Doc says the sac should not be removed surgically because the eye may dry up and die because the little gland has a function for the eye and if you remove that function,,,,
I hear that this OPT thing is in the record books and there is no cure for it but it can be healed. Hope you feel better. Take care.
Mark

[snoel]

Hi, I also have been diagnosed with OPT I have been dealing with it for the past 20 yrs.  It is bilateral and i do respond to oral steroids but can not get off of them I have gained about 40 lbs and have gerd, ulcers and osteopenia now.  I see an occuplastic and nuerophthamologist.  He thinks that I may be causing these symtoms (symptoms) myself.  Is this possible?  My MRIs show that there is inflammation and bx of rt eye and lt lacrimal gland shoe inflammation but I dont have that jelly substance the others talk about.  I do have severe pain that my dr. thinks should not be so severe. I have had strabismus surgery in 2004 and looks like I may need it again since the radiation i received in Sept.  I am off oral steroids and the pain is returning?  All drs. I talk to now say I have to wait 6-8 months before i see any help from the radiation.  I read that there usually is a underlying cause like thyroid, DM, Lupus, or Sarcardosis I have been tested for all of the following but skin disorders?  What kind of disorder I do get small lesions not pimples just red dots that are itchy.  My PCP thinks it is stress related can this be a cause?  I am just grasping at straws here.  I am tired just want a to be assured that this isnt psyhcosomatic.  Thank you
Shean

[John C Hagan III, MD, FACS, FAAO]

Orbital pseudotumor is not stress caused or we would all have it.  The most common cuase of OPT is "idiopathic" which means we just don't know.

You might consider injection of steroids into the orbit rather than oral steroids. Works for some people with fewer side efffects.

I might be a good time to take a fresh look at your problem at a world famous tertiary eye care center. I have listed these in the USA and you can retreive them with the search feature: examples  Wilmer Institute at John Hopkins, Bascom Palmer Eye Institute at U of Miami, Wills Eye Hopsital in Philly, Emory EYe in Atlanta, etc.

JCH MD

[snoel]

THANKS FOR THE RESPONSE I HAVE BEEN TO WILLS IN THE PAST BUT I THINK MAYBE I SHOULD GO BACK.  I WILL LOOK INTO WILMER SOMETIMES DIFFICULT BECUASE OF INSURANCE REASONS.  THANKS AGAIN...SHEAN

[John C Hagan III, MD, FACS, FAAO]

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[speedy32]

3 months ago i was diagnosed wit sixth nerve palsy i was on steroids for this starting at 100mg and weined of them my double vision disapeared
then 2 wks ago my left eye closed and wouldnt open unless i held it open
i was admited into hospital and given iv steriods and azathioprine my scan showed inflamation (inflammation) behind my left eye this has had massive effects on my life as i cant work due to the vision problems i also need to have my blood tested once a wk for lung function test and full blood count and a bone density xray

if this does get better im wondering will it keep coming back

[speedy32]

3 months ago i was diagnosed wit sixth nerve palsy i was on steroids for this starting at 100mg and weined of them my double vision disapeared
then 2 wks ago my left eye closed and wouldnt open unless i held it open
i was admited into hospital and given iv steriods and azathioprine my scan showed inflamation (inflammation) behind my left eye this has had massive effects on my life as i cant work due to the vision problems i also need to have my blood tested once a wk for lung function test and full blood count and a bone density xray

if this does get better im wondering will it keep coming back

[janna2005]

I have had OST in my first eye 20 years ago and then 2nd eye 2 years after the 1st. I was treated by an neuro-octomologist (spelling). I had extreme pain, eye droop, double vision and sensitivity to light. I had to be treated with IV bags of steroids very high doses. I also was treated with high does of the prednisone steroid in pill form. Another drug I had to take to rid me of this horrible eye pain, was a very expensive medicine. I cant remember its name, but it is a medicine that they give people that have recieved organ transplants so that their bodies do not reject the new transplant. I also had 2 weeks of low dose radiation to both eyes (small spot near pituitary gland). After 1 1/2 years of this steroid treament my OST finally went into remission or I think and pray that it has gone away. I have all of the side effects of the steroids after 20 years just as my Dr. warned me of. I have kidney stones, osteoperosis, cateracts (i am only 49), have broken my back, and my leg just in the last 2 years. Just hope this helps somebody. I would do it all the same way again though, because the pain that the OST caused for 1 1/2 years was terrible. I am glad I had the right kind of doctor to help me.