Any Optic Nerve Meningioma Patients Who've Had Surgery?

I was diagnosed last June; left eye has a meningioma wrapped around the optic nerve causing vision loss, color blindness, pain, and pressure.

The tumor spread into my brain near the sinuses as well. I had surgery the day before my birthday; July 31, 2018. They were only able to remove the part that had spread into my brain. The neurosurgeon didn't dare to remove any from the eye once they realized how wrapped up it was in the blood vessels. He was nervous it would blind me for sure and didn't want to take the chance.

I did 6 weeks of radiation. Last treatment was New Year's Eve. My oncologist and the rest of my medical team is disappointed that things have not only not improved, they have become worse. Testing shows the nerve is thinning and my vision continues to deteriorate.

I have been strong throughout this journey but that strength is waning... I have been monitoring this feed for a while but didn't feel up to posting; at this point, however, I could really use support from others that understand what I'm going through.

I know how you feel. My tumor is wrapped around my left optic nerve also. I have lost most vision in my left eye and eventually will be blind in that eye. I had 85% of the tumor removed August 2018. Dr is continuing to monitor the remaining tumor. I get so frustrated with how this has changed my life completely, don't get me wrong, I am thankful I am still here but I feel worthless now. I no longer can work and don't understand why God didn't go ahead and take me. I'm so sorry you are going through this too. Let me know if I can help in any way. I'm here to listen.
Mandy Rector

This was my first operation. My surgeon said he wouldn't go back in again. My surgery was done in Murray UT. Now we are planning on radiation that will last 6 weeks, 5 days a week. I am having MRI's every 3 months.This has been a crazy journey. Im sad that my vision didn't change with this surgery and am doing all I can to stay positive..

@kelleroberts My surgery was done by a team of neurosurgeons at Tuft's in Massachusetts. Every day I was there the entire team would come in to check in on me; as this condition, as I'm sure you're aware, is so rarely seen.

I hate to say this; I had high hopes and tried to stay as positive as possible throughout this journey too. However, these past couple of months I have struggled. None of my doctors have any insight to provide besides saying we're essentially in a "holding pattern". I swear, I am going to write a bio and name it "Holding Pattern; The New Normal."

@mrector It sounds like we were hospitalized around the same time! I was in from July 31-August 6. As I said in my message to Kelle; My surgery was done by a team of neurosurgeons at Tuft's in Massachusetts. Every day I was there the entire team would come in to check in on me; as this condition, as I'm sure you're aware, is so rarely seen.

I totally get the way you feel... I just spoke with my Long Term Disability Insurance company's attorney to start the process of applying for SSI....I know that supposedly the universe doesn't give you more than you can handle... But I tell you what, my fingertips are about worn out and I think I'm starting to lose my grip. 😭

What symptoms are you having at this point? I'd like to compare, just out of curiosity. 🤔

I had my surgery in Columbia, South Carolina and had a great team of doctors. The vision loss is my main obstacle. I also have trouble trying to hold conversation. It's like I know what I want to say but it doesn't come out right. I have to concentrate on trying to say what I'm thinking. I still have some dizziness but not as bad as it was. I guess I just don't feel like I'm the person I used to be if that makes sense.

I 1,000% understand all that too!!! I was so frustrated one day that I wrote out everything I was experiencing (and shared it with my family and doctors) because when having an in the moment conversation, it's like my brain would freeze up. I would know what I wanted to say was in there but couldn't get the words straight.

My Oncologist has had me on steroids since radiation and my neurosurgeon had me on them for 2 months-ish after surgery; thankfully, we are FINALLY down to 2 MG every 2 days. To add to everything else, I have also put on about 40 pounds... The mix of the inability to be physically active and those meds, really, didn't do me ANY favors...

I tried so hard to work. So hard that I literally was making myself sick because I wasn't listening to my body saying "REST!!!" I've been a hard worker for the almost 38 years I've been on this Earth... it took my management telling me to "STOP WORKING AND GET HEALTHY!" They, of course, couldn't hold my position forever; We just recently decided it was time to end on good terms. :'( I LOVED my job but it involved all the skills the "Old Lindsey" was a pro at. This "New Lindsey", well, apparently, she's also part of the "New Normal."

I hate to hear you are going through the same thing but it does help me to know that I'm not alone. I was a nail Technician and can't see well enough to do nails anymore. I completely understand the "new" normal. I live one day at a time and do the best I can to try and stay positive.

Im so glad I found this site.. I haven't had anyone around here that has had the problems that I do. They just dont understand. After trying to work this last week, Im a nail technician, I almost decided that there isn't anyway to keep doing that. After a day of trying to see where to place the brush, my headaches are horrible. So disappointed that the removal of this didn't help with my vision and somedays I think it is getting worse. I to am trying to stay positive and I know its only been a short time. But, this is really starting to work on me. Thanks for listening/reading.

I'm also having hand tremors since the surgery, so with those combined with vision loss there is no way I can do nails. It's so frustrating. Does the dr say if your vision will improve? My neurosurgeon says I will be completely blind in my left eye eventually. The remaining part of my tumor is still wrapped around my optic nerve and there is no way to remove it. He tried to remove as much of the tumor during surgery but the risks were to great to continue. I have brain MRI's every 6 months to monitor it.