Oh my God. Sorry folks. I completely forgot to post. The news is good. The tumour is benign.. I will have another MRI in August and then a follow-up appointment in September. All they suggested is to increase the Lyrica for the pain in the shoulder. I'm already taking it three times a day. At this point there is no plan for surgery to remove the tumour. It is too extensive and wrapped around veins that can bleed like a bitch. So I'm happy to say I'm good for now. All that worrying for weeks. Thank you again for all your support and love and checking and reminding me to stay connected. May is NF month so if you haven't heard of Neurofibromatosis now is a good time to educate yourself and stay connected with new research. And if you have ever heard of Dr. Frances Collins he is a remarkabe doctor who discovered the gene that causes NF. He's been in the news as he took his talents and is doing remarkable work in other areas of health care. Remember May is NF month. NF is more common than many other neurological conditions but less heard of. Why is this? Probably because those of us who have it have been affected in severe ways that they feel embarassed and ashamed because of how they look. Full of tumours that they have no control about. I feel I'm also here to educate and share my experiences with those around me. Especially since I have gone through so much and have learned so much, most of it doing it by my own research. I have an article that I wrote that was published in the NF Newsletter years ago. Thank you to all for your patience as I go on and on. God bless.
http://www.nfon.ca/ (If you scroll down the page on the first page there are photos of some members. I'm in there as well. I don't know if we're permitted to know what we look like but I'll take my chance. The last column, second from bottom. I'm famous.
Another fact that many people are not aware of...
Neurofibromatosis Type 1 (NF1) is among the world’s most common genetic disorders, occurring in about one of every 3,000 births. This makes it more widespread than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay Sachs combined.