The pain is unmistakable! People who suffer with Neurofibromatosis, who also complain of pain in their fingertips, seek answers to questions that often go ignored. "Why am I having this pain?" "Why does it hurt so much?"
The first doctor to recognize the pain that I could only explain as "nails through my fingers", was Dr. Stewart at the National Institutes of Health in Maryland.
During my trip to NIH 2 years ago, while participating in a study for Neurofibromatosis, a simple question, would change my life forever. "Do you happen to have pain in your fingers or toes?"
A light went on that day.....
First, what the heck are Glomus Tumors?
Common with Neurofibromatosis, Glomus Tumors are benign, slow growing tumors, that often grown in the fingers and toes, although they can grow anywhere in the body. These tumors cause significant pain and are classified into 3 groups: solitary lesions, multiple painful lesions, and multiple painless lesions.
Treatment of glomus tumors is surgery. The surgery involves medication to numb the hand, and removal of the nail, to expose the nail bed. Full removal can be difficult and recurrence rates reportedly are as high as 20%!
The pain from the surgery, was pretty bad....and recovery took a long time, but the outcome was worth it. A total of 5 tumors were removed from one hand, with more on the other hand, to be explored at a later date.
When I see the hundreds of stories, from people who have Neurofibromatosis and finger pain, I can relate to the pain and frustration they feel. I had gone into many doctors complaining of my pain, only to have no answers...no hope of ever getting better.
But there IS hope. If you are having trouble getting your doctors to understand your pain, the first step is to go into the doctors office, armed with accurate information.
Some doctors, in my experience, have barely heard of Neurofibromatosis, let alone glomus tumors and there is nothing wrong with helping to educate the doctors you see.
Thriving with NF is "EASY", when you go after the care you deserve,
while respectfully educating those who take care of you.