- CASE FILE
Since 2005, I've been dealing with a tumor behind my right eye. Two surgical attempts to remove, conflicting doctor reports and its back.
ABOUT THIS CASE FILE
In 2005, I went to a doctor for what I thought was allergies due to sinus pressure and pain, and was quickly sent home to take your typical allergy medicine. It wasn't until a week later, when I woke up to bruising all over and around my right eye, that we knew it had to be something more. A visit to my regular eye doctor landed me at an ophthalmologist for what they thought was cataracts. During all the typical preliminary tests and scans, my ophthalmologist found a mass located behind my eye in my right orbital cavity. Originally I was put on steroids to see if the mass's growth could be stopped, but after a month of steroids and continual growth of the mass a resection was deemed necessary in order to prevent my eye being push out of its' socket.
My ophthalmologist initially attempted to resect the mass through my eyelid, but after finding the mass too large to remove that way he cut from my eyebrow to the crease of my eye to remove a piece of my orbital bone to resect the mass from the side of head. After that surgery my ophthalmologist believed he was successful, until about a year later when the same symptoms started to occur again. The same ophthalmologist was quick to act completing the same surgery again, having to permanently remove a piece of my orbital bone leaving in a mini erector set in its place.
Approximately two years after the second surgery, I started to experience minor symptoms again. After visiting my ophthalmologist again and finding out that the mass had begun to grow back again. Seeking an alternative solution my ophthalmologist sent me to the Boscom Palmer Eye Institute in Miami. However that trip resulted in the doctor there saying nothing that could be done. Unsatisfied with that answer my ophthalmologist sent me to the Scheie Eye Institute at UPenn. After numerous meeting and appointments there I was sent away with the conclusion 'not to worry about it' because this mass would not affect me like my previous masses and it wasn't going to grow back. Coming back to my original ophthalmologist, he decided that for the time being I'd be fine and I should reach out if I started to experience any symptoms moving forward.
Fast forward to November of 2018 and the symptoms were back in full force. After reconnecting with my ophthalmologist, we discover that the mass had in fact grown and was bigger that before. There is an extensive lymphangioma diffuse throughout my right orbit, very intertwined with normal orbital structures. My ophthalmologist said after visits and scans, that it needed to be surgically removed however it was out of his realm. He placed me on a variety of restrictions like no bending over, no straining, being on a stool softener, no working out, no lifting things over 5 lbs-- basically nothing that'd cause any internal pressure. Unsure of how to proceed my ophthalmologist has been working hard to find a doctor to help me with what is going on. Unfortunately, I've spent most of 2019 driving between doctors trying to figure out what to do about it, each having complete different ideas/restrictions/views on how to proceed.
I visited a new ophthalmologist at the Boscom Palmer Eye Institute in Miami, in his opinion surgery wasn't an option, so he referred me to a Neurosurgeon at the Jackson Memorial Hospital to discuss sclerotherapy and have an angiogram done. Following the angiogram, the neurosurgeon determined that sclerotherapy was not an option for my case. And referred me back to the ophthalmologist at Boscom Palmer Eye Institute for possible surgery.
In order to get a second opinion, my original ophthalmologist referred me to a neurosurgeon at the Department of Neurology for USF Health. There they looked at my charts and assessed my case, and deemed not doing the surgery would result in loosing my eye. The neurosurgeon paired with an ocular surgeon from the USF Health Eye Institute would attempt to remove the mass via a craniotomy. Pre-op appointments, tests, scans and the surgery where all scheduled, and the big surgery was set for August 1st. Only two weeks before the surgery the ocular surgeon withdrew from the procedure after consulting with a ophthalmologist from the Medical College of Wisconsin that did not recommend orbital surgery because the risk of not being able to completely excise the lesion, which would leave me susceptible to the same symptoms I currently have, with an added risk of ptosis, strabismus, vision loss among others that occur with a craniotomy.
Following the cancellation of my surgery, I had an appointment with the ophthalmologist at Boscom Palmer Eye Institute. Now he is suggesting a gamma-knife radiation and/or steroids, but wanted to consult with the neurosurgeon from the Jackson Memorial Hospital to see if I was a potential candidate for this option. He also claimed that the restrictions he had originally agreed with and increased where no longer necessary. At this point I am waiting for follow-up instructions from this ophthalmologist.
Two days after my appointment with the ophthalmologist at Boscom Palmer Eye Institute, I received a phone call from a different neurosurgeon from the Neurosurgery Department at USF Health who had been consulting with the neurosurgeon from Jackson Memorial Hospital. She said the restrictions were in fact needed, bringing up other procedures that had been ruled out (ie sclerotherapy) and suggesting a new MRI. Her concerns were with surgery I would loose my eye completely.
And that leaves me where I am today. Waiting for a phone call for what test to do next, and what procedure may or may not work. I'm willing to jump through the hoops, but right now the doctors don't know and can't agree on what hoop to jump through next.