Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
I wanted to start a discussion and get the opinion of everyone about if the current medical treatments are capable of keeping those of us with NF from becoming deformed and covered in bumps.
I see a lot of pictures of people covered in bumps, and with large tumors on their face and I wonder why they didn't have them removed before they became a problem. I would think if a bump was removed soon enough, it could be removed and not leave too much of a scar, but once it gets to a certain point, removing it without causing damage is almost impossible.
Are some people in the situation where their bumps became bad before the technology existed to remove them correctly?
Do you think dermatology and plastic surgery have gotten to the point where most people with NF can count on not becoming too deformed and having to put up with bumps that cause a lot of pain?
I know part of this question might sound vain, and most people should be happy, just to have their health, but I think theres nothing wrong with wanting to be without bumps, at least in places that are visible.
If we werent a little vain, then I dont think anyone would be discussing procedures like ED and traveling to New York and Texas just to have it done.
I was just wondering what the group thought and also looking for a little comfort. :)
Thanks,
James
I see a lot of pictures of people covered in bumps, and with large tumors on their face and I wonder why they didn't have them removed before they became a problem. I would think if a bump was removed soon enough, it could be removed and not leave too much of a scar, but once it gets to a certain point, removing it without causing damage is almost impossible.
Are some people in the situation where their bumps became bad before the technology existed to remove them correctly?
Do you think dermatology and plastic surgery have gotten to the point where most people with NF can count on not becoming too deformed and having to put up with bumps that cause a lot of pain?
I know part of this question might sound vain, and most people should be happy, just to have their health, but I think theres nothing wrong with wanting to be without bumps, at least in places that are visible.
If we werent a little vain, then I dont think anyone would be discussing procedures like ED and traveling to New York and Texas just to have it done.
I was just wondering what the group thought and also looking for a little comfort. :)
Thanks,
James
Still other are afraid of surgery and won't risk disturbing the status quo if there is no major risk to their health by not having the surgery.
There was a special on the History channel I believe. I'm fuzzy on the details. These men in India had huge tumors, possibly plexiforms on their faces. One of the men absolutely refused to see the specialist and discuss surgery. His wife did not want him to and for cultural reasons, he could not go against his family. And you know that his surgery would have probably been at no cost to him for being part of the show.
My personal stand. I've had some removed that were on my face and my bra line. The ones on my face were for cosmetic reasons mostly and the ones on my bra line were getting rubbed and irratated. I am happy that I did it. I have many more that I would love to see go away but I just can't do it right now.
I also have many other medical conditions that are HUGE drains on my time, energy, money, and my life. There are weeks that I will have 5 different Dr. appts on 5 different days for 5 different issues, yikes! If I had to add one more on that pile, I'd scream!
Do not judge others because they choose a path that is different than yours. Seek first to understand!