Hi and welcome,

I am being treated for a pseudo tumor/orbital inflammatory disease. I have eye problems for several years. In the beginning I had a very noticeable droop to my left eye and then it went back and forth from right to left.

I was diagnosed with ocular myasthenia Gravis. One positive test and one negative. Well then that went away and I have no problems with that.

Then my left eye began to protrude and after many eye inflammations and blethritis and many MRIs they found a sizable tumor (?) behind my left eye.

It is benign and these tumors do not become cancerous. I am going to Mayo in 10 days and hopefully they can get to the root of the problem.

My vision changes on almost a daily basis and after months of high dose prednisone the tumor is unchanged. So they are thinking perhaps it is something else. I also have frequent headaches, mostly pain behind the eye when the pressure builds. You stated that doctor said swelling, mine is called enhancement. Wonder if they are the same but worded differently?

I would definitely pursue it and I am not trying to scare you. I have had this problem for a long time and I am doing ok. I know it can be treated, just have to find the right doctor to pinpoint it.

Here is what my last MRI report states. Maybe your doctor has mentioned some of these things to you or you can relate to something it says.
I had to look up most of what is on the report so that I could understand what everything meant.

REPORT:
There is proptosis of the left orbit. There is mild enhancement of the
intraconal retrobulbar fat with prominence of the vessels suggesting
increased vascular flow. There is prominence of the superior orbital vein
and sluggish flow could not be excluded. There is enhancement beneath the
sclera which is felt to be outside the orbit and due to prominent vessels.
Uveal scleral thickening is less likely.
There is also mild enhancement of the left optic nerve which is attenuated due to the proptosis.
The lacrimal gland is mildly enlarged as compared to the right but there are no enhancing masses.
The optic chiasm is unremarkable.
There are no enhancing brain parenchymal masses. The ventricles are
midline with no mass effect or shift. There are small foci of abnormal
increased signal in the white matter at the corona radiata which could be
due to mild chronic white matter ischemic change. This was seen on the
previous study and is unremarkable. There is no evidence of acute
ischemia.

IMPRESSION:
(1) Left orbital proptosis with mild enhancement of the retrobulbar fat
with increased vascular flow which could be due to inflammatory orbital
pseudotumor but lymphomatoid granulomatosis or lymphoma is not excluded.
(2) Prominent left superior orbital vein which could be due to sluggish
flow.
(3) Postinflammatory changes with a mucous retention cyst in the right
maxillary sinus, unchanged from the previous study

Only sounds scary until you look everything up. I hope something on here can be of use to you. Again, it is not as bad as it sounds and it is treatable.

Good luck and God bless,

Judy