Category: Health and Wellness
This is the reasonn why I am legaly blind. Any one else have neurofribomatosis? Cause if you do, you aren't alone.
No way! I didn't know anyone out there in the blind community had NF2. Well, not sure if you have 1 or 2. I have 2. I had a manigioma the size of a grapefruit wrapped around my brainstem. When they removed it I woke up blind. I also have schwannomas on each 8th nerve. The one on the right has already done it's damage. I can still hear in the left, but how long that will last I have no idea. I am trying to get to a place to get the right tumor removed and have an auditory brainstem implant put in that way when the left goes I'll have a little something. I hope I can keep my hearing for a while to come though. I'll keep hoping that they come up with a cure for this. If you are interested in a yahoo group or a website to talk to other nf2 ppl just let me know.
I have NF1. But unlike you, I still have my tumors. I have low vision due to a tumor in my optic nerve. It doesn't allow enough blood to get to my eyes. And I have one tumor in a part of my brain that controls the throat. So, in result, I have a speech inpedimetn, and I can also choke out of no where.
Oh no, I've just had 8 tumors removed, there are still plenty. The one that messed my vision up was a huge one on my brainstem. I woke up with no vision. I kind of think the doctor messed up. Then they removed one from my optic nerve hoping to get vision back but it didn't work. Then they removed 5 from my spine. But I still have one on each ear nerve, and i don't know how many in the brain, and dont' know for sure how many on the spine. add me to messenger if you got it. I got some stuff I want to talk with you about. A doc in Japan thinks he found the cure for NF1, or as close as their going to get.
Oh I see. Well, I've had no surgery done on me. I've only had Chemotherapy.
As for the doctor in Japan, sounds cool, but frankly, I like having Neurofibromatosis.
waht? Say that again? How do you like having tumors? That makes absolutely no sense. Explain.
Yes, I don't understand it myself. Some people with neurofibromatosis are not so lucky. I've seen a show about a woman who had a two hundred pound tumor removed from around her midriff. That required an eighteen hour surgery, and multiple blood transfusions during the operation itself. If she had not had it done, the thing would have eventually killed her, because it was feeding off of her blood supply and putting a great deal of strain on her heart. The risks for developing a postoperative infection were extremely high, but she was willing to take it to live again. Lori Hugawin's her name, if you'd like to look her up. sorry for the botched spelling. lol
Yes, all very good points. And yes, I'm considered lucky to have a small case of Neurofribomatosis. Some people aren't so lucky, and I thank God every day for me well being. The reason I don't want my tumors taken out is because it would mean having regular sight. I like being legally blind, it's my way of life. I don't want to have normal vision. Plus, I'm use to it by now. And even if they tid removie my tumors, hey could grow back. NF is a genetic diseace or a mutation, so it's in your D.N.A.. The tumors could grow back.
are yours inoperable? just curious
No, I'm albe to be treated on and have surgury done on. I've had Chemotherapy, but it didn't really work. and I really don't want surgury right now.
i know you had said you don't want to regain your vision if the tumors were removed, but what are the odds of that happening?
Pretty much slim to none. If i do get surgery, it's most likely that I'll go totally blind or just stay the same. Or, since my tumors are so close to my brain, i could get brain damage.
Ok Little Mermaid. You are an odd one. I don't understand what you are saying! This disease is horrible! I pray every day that God will heel me. You say if they remove it because it's so close to your brain you could get brain damage. GBelieve me, if they don't remove it you won't have to worry about brain damage, it will kill you if it is that close to the brain. But since I have type two mine is actually more dangerous than yours. I have schwannomas on the right and left ear nerves they are both pressing on the brainstem. I am trying to get to a place to get the right one removed since I am already deaf in that ear to get some pressure off the brainstem but I am having insurance problems. You say you don't want it to mess with your vision because you like the way it is now? There are just things in life that we have to accept and do any way. I don't want the left one removed because then i'll be deaf ontop of blindness. But if there were a way for me to get it removed without taking my hearing completely I'd be all over it. I just honestly don't know where you are coming from.
Holly-Bear I pray for you. May God help you get well. I sometimes do want my tumors gone, but at times, I don't want to. I confuse myself all the time. The Chemotherapy stopped my tumors from growing for now. So, as long as they don't grow, I don't want surgery, but trust me, if they do start to grow, I will probably consider sugery. I hate the headaches I get due to my tumors, but at the same time, I'm afraid to be operated on. I'm not sure what do as of now. Right now, I'm just glad to be alive and healthy. Plus, this deseace is very risky to cure. As you may already know. The consequences are very risky and daring. I have to accept who I am. Even if I do have a horrible life threatening deseace.
I hope things work out for you. If you ever want to talk, send me a quick note.
And yes, I am odd.
it's finally going to happen.
I'm having surgery on my neck to remove a ball of nerve tissue from neck.