lynzee (@lynzee)

Hey guys, been a while. Had a follow up MRI done and the tumor has progressed into the soft tissue. We also found that the tumor in my brain has regressed, at least that's good news. I am still struggling with the doctors in my area as none of them know what to do. I am beyond frustrated. I still have constant discomfort; I limit my daily activities or else risk having to lay in bed, sobbing, because the pain is so much. I have relayed this information to doctors, and still, they will not provide me with anything for pain relief. I am currently on gabapentin and Celebrex. They help to an extent, however, when it gets really bad, it doesn't help at all.

I have had several vision tests done and the results vary. I keep asking if they want me to strain or not to see (which causes more pain from trying to focus) and they won't give me a solid yes or no. So, it seems to run anywhere from 70/20-90/20.

@andavis1189 when was the decision made to remove that nerve? I have mentioned several times to doctors that I'm at the point of just one of the eye removed.

@mrector and @kelleroberts Wow, as much as it pains us to learn that there are others dealing with this, it almost is a relief too. Just knowing that there are others who understand; especially when no one else does. But, how could they, right?

I totally get the pain after TRYING to focus on something. Oh my goodness, especially after vision testing, it hurts so badly the rest of the day. Bright light, reading, using electronics, you name it, I pay in the end. 🙁 I've tried eye patches, a bandana, etc. It would help some to keep it covered, but the fabrics irritate my eye, argh! So, now I just close my left eye when I'm doing things or it is bothering me.

I am at the point where I just want them to take the dang thing out. I even asked my optometrist if she could find me a "black out" contact for my left eye. Unfortunately, they cost around $200! 😲

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."

@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. 🤔

@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."

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.