Hello everyone! As we have been published Case Studies telling that individual stories of those who have had Schwannomas - we have strived, where possible, to tell the stories of the kinds of Schwannomas that are both common, and some which are less common or downright rare. A friend of the Schwannoma Survivor page Susan Hicks got in contact with me regarding a rare Left Orbital Schwannoma (This is a Schwannoma behind the eye)...and since hers was one of the first such cases I had heard of, I asked her if she would do a Case Study for us. She graciously agreed to tell us her story - and we publish it here with the hopes that it may help others. We thank Susan for her time, and wish her the best in her recovery - Neil
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1) How old were you at the time of your diagnosis?
I was 51 years old.
2) Do you have any history of Schwannomas in your family?
No.
3) Where was your Schwannoma located?
The schwannoma was located in the left orbit. Initially it was labeled as an angioma.
And what were the symptoms that lead to your diagnosis?
We had moved recently. I have glaucoma and the new doctor did not like the look of my optic nerve. I have always been told they are small, almost childlike. I went for the MRI he ordered in January 2013.
The MRI discovered a tumor by accident; it was not what was expected.
4) Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)
Initially, they were going in for an angioma, so the procedure was as an outpatient. The Doctor went in at the corner of my left eye. He removed a piece of the skull to get behind they eye. After he got inside he realized it was not an angioma. He removed the tumor and sent it off for biopsy. I was put back together with a titanium plate in the temple. He told me he got 100%. I had double vision for 3 months and the pupil was dilated for 6 months. Then the pupil shrank smaller than normal and no longer responds to light normally.
Fast forward 15 months, I was having problems with the left eye. They were minor complaints. Intermittently I would have trouble keeping the eye lid open, at times the eye itself felt like it was pulsing, and increased light sensitivity. I was sent back to the surgeon.
He ordered an MRI. There was a 7 MM tumor. Here is where the potential for malignancy is brought up by the doctor. The surgeon sent me back to the neurologist. We waited another 3 months to try and determine if it was growing or what was left behind in the first surgery. We never did a post-surgery MRI.
The next MRI showed growth, the tumor was now 1 CM. Now the surgeon and neurologist think malignancy is a real potential. They want to wait another 3 months. I sought out a second opinion at Johns Hopkins. It does take a while to be seen here. At this point, I began to have pain on the left side that would wake me when I slept. Also, a bright room would cause a horrible headache.
The next MRI shows marginal growth, now 1.1 CM. Now they want to wait 6 months. I am uncomfortable with this. I kept my Johns Hopkins appointment. This doctor was sure it was a schwannoma again. We discussed the risks of doing nothing, the risk of surgery, and the very off hand chance of malignancy. He recommended surgery. We decided to take this path.
I had surgery in March. I was scheduled for an hour but it actually lasted 4 hours. He followed a similar path as the first surgery. The titanium plate was removed and the same pieces of skull were removed. There was so much scar tissue and the tumor was very ingrained in the lateral muscle controlling left and right movement, it turned into more of an event than expected. He also chose not to put the titanium plate back in when he replaced the pieces of skull; he said I would heal faster and with less pain without it. I stayed in the hospital overnight.
I can see from that eye but it no longer moves causing double vision. I am also cross eyed on the left. If this does not improve, I will see yet another surgeon in September to center the eye. I may always have some amount of double vision to the side even after the next surgery.
He was only able to remove 95% of the tumor. He says it will return but estimates 10 to 20 years. He said sometimes with schwannoma’s you only get only one chance to completely remove them. So we monitor with routine MRI’s. Biopsy reveled it was a schwannoma again.
5) Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?
Getting the right doctor with the correct experience is critical. I was misdiagnosed initially. Ask about all the possibilities. Also, get second and third opinions. Ask about their experience with all the possibilities. If you have a tumor in the orbit, seek out a neuro-ophthalmologist!
6) Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you? (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)
The first surgery was rough. I was home and probably should not have been. I was not able to function. I was in this state at least two weeks. Someone had to be around constantly. The white of the eye was gone, replaced with blood. My left eye no longer responded to light normally. There was significant damage to the left optic nerve. The left eye was rotated a bit; the new glasses had to have a 10 degree rotation in the left lens. I returned to work 6 weeks post-surgery.
The second one was easier. I was up and moving without assistance within 8 hours post-surgery. The eye was crossed but looked fairly normal. There was white to the eye and no blood at all. I was back to work at 2 weeks post-surgery, from home. I began driving at 3 weeks post-surgery. The doctor told us how to see just one image. Place scotch tape over the left lens of the glasses. It works great. At 4 weeks post-surgery, I was back at the office.
7) Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)
Most things, I still miss seeing from the left side but it will return. I have significant optic nerve damage future. The tumor will also regrow another unknown.
I choose not to sit and worry about any of this. Instead, I choose to live and deal with the bumps as they pop up on my journey.
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