84 gram Clear Cell Meningioma grade 2!/blindness

Hello, my name is Jason and I am 28 years old. I was diagnosed on August 19 of this year. I went in for an MRI and several hours later got the "you may want to sit for this" call from the doc. She said I had a huge and rare tumor in my head. I made the appointment for the Neurosurgeon who also expressed amazement as to the size of the tumor and that it was looking more and more like it was benign. I had the surgery on the 25th of August and pathology confirmed the tumors benign status. The tumor itself is called a Clear Cell Meningioma grade 2 and it wieghed 84 grams and was huge. Due to it's size, it was pressing on my brain for so long my vision went out on me and thus the MRI (after years of extreme headaches and daily throwing up. I have healed well and want to go back to work and otherwise continue with the gift that is life..................except for one problem, I can't SEE. My vision remains messed up to the point that I cannot drive,read,draw,watch TV, or even clip my own nails. Is there anyone else out there who has had or has the same problem (with vision loss)? Plese help if you have any info you may have to ease this hell on earth, thank you

Jason,

It's amazing what you were able to bear -- the pain, the nausea. You must be incredibly tough. My son looks back on his pre-diagnosis days too and thinks, "How did I DO that?" He's really brave too... every day.

So I just wanted to say that I'm rooting for you and I think you have already survived one of the worst things that can happen to a person, so now finding a way to give your life value and purpose and to bless others with every day you have on earth... well, it's a journey for all of us but for you it's going to be an INCREDIBLE journey. As you say, the gift of life. It's complicated now.

I don't know a lot about the specific skills and tools that blind people work with but I bet there is a chapter of the Amercian Foundation for the Blind in the city nearest you. Is there someone helping you work on this? Click on http://www.afb.org/ They say: "AFB's priorities include broadening access to technology; elevating the quality of information and tools for the professionals who serve people with vision loss; and promoting independent and healthy living for people with vision loss by providing them and their families with relevant and timely resources."

If I were you I would also get a lot out of some wise counselling... maybe the Foundation can recommend someone with the right perspective for you. You have a lot to grieve and let go of, but you also get to be alive, and many like my son are grieving not only various functions but their very lives, knowing that they will not get to live for long, never get to grow old.

THat doesn't help you and I am not minimizing your loss... I'm just saying I understand extreme grief. Losing your sight is plenty to grieve over.  I'm sure you know of the 'stages' of grief: denial, anger, bargaining, depression, acceptance. Except the joke is that it's not at all a linear experience. It's a big chaotic mess. You can feel all those things at once.

We're all in this together Jason, and truly I wish you all the best. Hope you feel the steady love of friends and family all around you as you find your way... literally and figuratively.

Love, Sarah

mom of Andy 27 dx gbm 1/09

Hello again, thank you so much for understanding so well the humanity behind something so profound for a single person. You are very right in that I do have the opportunity to wake up in the morning and hear birds chirp or feel the morning sun on my skin. I was diagnosed with type 1 diabetes when I was 16 and subsiquently fell into a depressed and rather angry way of life. I also met my soon to be wife who has been in this fight with from the get go (1998)and she is the one helping me with daily menial tasks.  It is hard to balance the hope that I will one day soon wake up and be able to see again, I have never wanted anything more in my life. I go in for my MRI tomorrow and hope on all levels it has not come back! Either way I will live everyday as though it were my last. Thank you for all your info and hang in there yourself, time doesn't heal all wounds but Love and light can help them heal.  Take care PLUR, Jason

Here's hoping on your MRI. Brains are amazing... how they can recover over time. I heard a great story on public radio about a woman who didn't talk for years after a stroke but her son kept playing classical guitar for her, and she ultimately went from moaning along to singing and back to speaking. Brains do stuff like that that the doctors can hardly explain. One part of the brain can 'learn' from the other or take over functions for the other. People who have lobectomies find that they do get their memory back in time... it's incredible.  I hope your brain will recover in a way that nobody can foresee or explain! Of course it would be really great, the best, to have someone look at the MRI and said YES straight-up, you're gonna be fine. But even if they don't, I still think amazing stuff might happen.

Sarah