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.
EDUCATION/ATTITUDE/SHARE/YIELD
Thriving with NF is "EASY", when you go after the care you deserve,
while respectfully educating those who take care of you.
Nice post.
ReplyDeletefinger pain
Good post.
ReplyDeletefinger pain
I had a glomus tumour removed about a year ago, the surgeon said he had not seen one for 10 years it is very rare he gave me a photo. The pain returned after about 6 months its horrendous. I went back and he said it is rare for it to recur so sent me to the pain clinic, I have had two nerve block injections and he said he would do an MRI. The result came back yesterday and guess what? Another glomous tumour, it feels like someone hitting it with a hammer, it is in my thumb. Nothing works for the pain so I will be glad to get more surgery. Thanks for this article I am posting it on the NF sites in FB.
ReplyDeletecould they tell before they removed it that it was a glomus tumor I have been hurting for 9 years no one will help...I have nf1 but never any problems related to it the mri show a growth but still no one will help they don't believe how excruciating the pain is
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ReplyDeleteI am in the same position. Worst pain ever. I am so careful with my fingers. I dread knocking them, it just hurts so much. The slightest bit of cold weather and i am miserable. I have nf1, which is getting progressive worse as I get older but this is by far the worse part of it. I can just about cope with lumps and bumps. Anyway, after years of going to see my G.P. I have finally been referred for surgery for removal of suspected glomous tumours....hooray.
ReplyDeleteThey just don't know or believe how bad the pain is.
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