Aa
Optic nerve tumor
I'm new and not sure if I'm posting this in the right place. I was just diagnosed with a tumor on the optic nerve of left eye. The tumor is behind the eye, pushing up and in toward the brain. I had started having migraine-type headaches, almost everyday. I also started having episodes of kaleidoscope vision, which could last anywhere from 30 seconds to 20 min. Sometimes after the vision disturbance, I would get a migraine and sometimes not. I went to my family doctor, who sent me to a neurologist.
The neurologist did a thorough exam, and she thought maybe these headaches could be migraines with auras, due to hormonal changes of menopause. But, she sent me for an MRI to be sure because she noticed, while examining my eyes, that the left eyelid was a little droopy, and the vision in the left eye was blurrier than the right, even with my glasses on. She was just as shocked as I was that a tumor was found in the MRI.
For now, I'm taking Gabapentin, 300 mg. twice a day. It's helping with the headaches, although I feel a dull ache all the time (much better than the migraine pain I was experiencing before). I have alot of pain that runs down the back of my head and into my neck, which is the main thing that's driving me crazy.
Today, I got up and noticed a black dot in my vision in the left eye. It's just always there now, and I didn't have that before. I also noticed my left eyelid is a little more droopy than it was. My neurologist is setting up an appointment for me to see a neurosurgeon to see how this should be treated. She thinks the tumor is probably benign, but it's something they just don't know for sure right now.
This is all a shock to me, and I have no idea what to expect. Help!
The neurologist did a thorough exam, and she thought maybe these headaches could be migraines with auras, due to hormonal changes of menopause. But, she sent me for an MRI to be sure because she noticed, while examining my eyes, that the left eyelid was a little droopy, and the vision in the left eye was blurrier than the right, even with my glasses on. She was just as shocked as I was that a tumor was found in the MRI.
For now, I'm taking Gabapentin, 300 mg. twice a day. It's helping with the headaches, although I feel a dull ache all the time (much better than the migraine pain I was experiencing before). I have alot of pain that runs down the back of my head and into my neck, which is the main thing that's driving me crazy.
Today, I got up and noticed a black dot in my vision in the left eye. It's just always there now, and I didn't have that before. I also noticed my left eyelid is a little more droopy than it was. My neurologist is setting up an appointment for me to see a neurosurgeon to see how this should be treated. She thinks the tumor is probably benign, but it's something they just don't know for sure right now.
This is all a shock to me, and I have no idea what to expect. Help!
Hi there-
Sorry to hear about your optic nerve tumor. It sounds like your neurologist is on the right track to send you to a neurosurgeon. Like Surgi said getting the best one will be the best way to proceed once you know more about what is going on.
You might start gathering copies of everything that you can like your medical notes, all lab tests, a copy of your MRI on a disc. As you may decide to surgeon shop and will need those things. Also it will help you to really learn and understand more about what your situation is all about.
You might even keep a journal to write things down as you learn more and questions pop up. Another thing that helped me when I was diagnosed with a pituitary tumor was to involve my husband and Mom. I now try to always have a second person with me at my medical appts mostly to observe. But then they help me to debrief afterwards because sometimes there is information overload. Also I sometimes get emotional/frustrated at my appointments and then I hear everything through that lens and might misunderstand things. So having that second person really helps me to be a better patient and be more objective in how I hear what is being said.
Do you know if this tumor is in your pituitary gland or not?
Horselip
Sorry to hear about your optic nerve tumor. It sounds like your neurologist is on the right track to send you to a neurosurgeon. Like Surgi said getting the best one will be the best way to proceed once you know more about what is going on.
You might start gathering copies of everything that you can like your medical notes, all lab tests, a copy of your MRI on a disc. As you may decide to surgeon shop and will need those things. Also it will help you to really learn and understand more about what your situation is all about.
You might even keep a journal to write things down as you learn more and questions pop up. Another thing that helped me when I was diagnosed with a pituitary tumor was to involve my husband and Mom. I now try to always have a second person with me at my medical appts mostly to observe. But then they help me to debrief afterwards because sometimes there is information overload. Also I sometimes get emotional/frustrated at my appointments and then I hear everything through that lens and might misunderstand things. So having that second person really helps me to be a better patient and be more objective in how I hear what is being said.
Do you know if this tumor is in your pituitary gland or not?
Horselip
And also, if you are a Christian, definitely get a network of other believers to cover you in prayer during this stressful trial!
You are in the right place, though you might also try this post in the Eye care forum, where a doctor replies to many of the posts & because the moderator on this forum is away right now. I can only tell you what I know from my own experience with an immediate family member who has a menigioma that was extremely close to the optic nerve. Her tumor was between her eyes and she had gamma knife surgery over 8 years ago and the tumor shrank for awhile and then has remained the same size.
But since they say yours is on the optic nerve and your vision is being affected, they probably would say gamma knife was not an option for you. What they had wanted to do was shave one side of my family member's head cut out a piece of skull, move aside brain tissue so they could manually remove the tumor. But my relative didn't want to go that route. If they say surgery is your only option, I'd recommend trying to search out the best neuro brain surgeon in the U.S.A..
But since they say yours is on the optic nerve and your vision is being affected, they probably would say gamma knife was not an option for you. What they had wanted to do was shave one side of my family member's head cut out a piece of skull, move aside brain tissue so they could manually remove the tumor. But my relative didn't want to go that route. If they say surgery is your only option, I'd recommend trying to search out the best neuro brain surgeon in the U.S.A..
Have an Answer?
You are reading content posted in the Brain/Pituitary Tumors Community
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.
