Love these & all at Mayo ❤️
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Love these & all at Mayo ❤️
Sep 23, 2019 · Optic Nerve Sheath Meningioma, Radiation and Vision Issues in Brain Tumor
Thank you so much! I just completed 28 days of fractionated radiotherapy. No improvement yet, but my fingers are still crossed. The Drs seem to think there is a small possibility, but not likely, that my eyesight will come back. Thanks so much for the balance article. It is so well written, like an instruction manual. Will definitely be trying this out. So thankful for people like you & this wonderful resource!
Sep 6, 2019 · Optic Nerve Sheath Meningioma, Radiation and Vision Issues in Brain Tumor
Hey guys! I am 37 years old & was recently diagnosed with an optic nerve sheath Meningioma. In a matter of three years I have lost all vision in my right eye. Most would think, as I did, you have 2 eyes- you’ll be okay with just one & boy was I wrong. My life has changed drastically! Between no longer driving at night (or in the rain) & the balance and double vision issues, I have slowed down a lot!
I am currently at the half way mark of my radiation vacation at Mayo in Jacksonville & I have a wonderful team taking care of me & couldn’t ask for any better. ❤️
I am interested to see if any of you treated with radiation, with vision issues, regained any of your sight?
I know it has been a few months since your post, but have you heard of the fibromyalgia 2day class that teaches you how to manage symptoms? I am scheduled this next week to participate- so no suggestions yet! I know it it offered through the dept of psychiatry. You provide answers to questionnaires, then meet with the dr for consultation before the class, and the class follows, 2 days from 8-4. I am super excited to see what they can help with as I have been on multiple medications that never really seem to do the trick.
Hope this helps & you start to feel better soon 💚
So sorry to hear about your diagnosis. I know it is very nerve racking!
I recently had a biopsy on my optic nerve & was diagnosed with a WHO grade 1 ONSM- benign- thank the Lord. I started radiation last week & all is well so far.
Just wondering if by surgery you mean biopsy, or are they planning to surgically remove the tumor? Will you have radiation & what grade have they told your tumor is?
I hope all goes well, I will be praying for you to have a quick, easy recovery. I will be here in Jacksonville for the next six weeks for treatment; would love to meet up & chat if you can. You can never have too many friends in a situation like we are in. ☺️
Rest assured you are at the right place & that the wonderful group at Mayo will take really good care of you. ❤️
Hi Mandy! My name is Melissa James & I was recently diagnosed with ONSM on my right eye. I had biopsy surgery for proper diagnosis before starting radiation this past week. I noticed you said you had surgery to remove part of the tumor, did you have radiation/Chemotherapy for the rest? Wondering how you’re doing & if you’ve regained any of your sight? Hoping you’re doing well & sending prayers & good vibes your way ❤️
Thank you Scott for sharing your thoughts. I’m equally sorry for your struggles, both past and present, well, & future for that matter. 😊
I know when we got the offer for hospice, the first time, it was absolutely shot out the window. The second offer was no easier than the first, but much needed. In just a few short days the stigma was evidently removed from both our minds. I will forever be grateful to Emerald Coast Hospice for what they did for our family, exactly how I feel about Mayo now. I wish there were some way to advocate for Hospice agencies to remove the stigma entirely. I’ll have to look into that….
Your wife sure was a lucky woman to have you care for her. My caregiving adventure didn’t amount to as much as yours, isn’t it a blessing to be able to care for the one you love (in a way you would like to be cared for)? To this day, I still look back and think how lucky I was to have that special time with my Granny. I don’t remember the bad, only the good, & it instantly brings a smile to my face. I sure do miss her, as I know you do your wife. They watch over us today and are eternally grateful for what was done for them through love, & one day you will be rewarded for that service!