Hi I am a 23 yr old female, I have had cafe au lait spots basically my entire life, as long as I can remember, I have the freckles in my armpits and large plexiform neurofibroma which was located on the top of my right foot. I am of shorter stature then the rest of my family though they are not significantly tall I am the shortest one that includes immediate family as well as younger cousins and so forth. I had my first MRI when I was nine and the doctors seemed to assume that it was a neurofibroma though it did not cause me significant pain they saw no reason to remove it because of my age. Basically I only had pain when there was a large amount of pressure on my foot and I was not able to wear any high heeled or nice shoes or it would either press down on the lump or make it even more obvious in which case people would think I had hurt my self or was wearing shoes that were much too tight. Last year I underwent another MRI in preperation for surgery to remove the lump (because it was starting to be more painful to wear other shoes such as sneakers) and was at first told it was a rapid cancer that i needed to take care of immediately, my family was devesated, I scheduled a biopsy and they finally realized it was a Neurofibroma. I had even told them that my old family doctor thought it was a Neurofibroma but they didnt believe me because it didnt cause me pain and they could see my spots which thankfully are hidden under my clothes. It was a cancer doctor that performed the surgery and he only removed a portion of the fibroma so that he would not hit the nerve and risk me not having feeling in my foot, but it has definately been an imporovement. I am lucky enough to have a mild case from what I have read about the disease over the years, I have yet to be officially diagnosed with the NF and I am I trying to set up appointments with doctors as well as genetic councelers should I decide to have children in the future, or maybe adopt. Any information anyone would have that would be helpful would be much appreciated!!! Thank you all in advance!
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- By mfehr
- Posted October 29, 2009 at 10:20 pm
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Im not sure what my fiance and I are going to do yet, its something we are discussing. But my NF is also spontaneous nobody in my family has NF or has ever heard of it before learning that that is what the lump on my foot was, but I research as much as I can to learn as much as possible about everything.
- By pamelamarsden
- Posted October 30, 2009 at 10:12 am
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wow, that is a hard choice. There are many great children to adopt for sure, but if you do decide to have a baby of your own. Note that it is a 50%chance. If you do and your child does inherit the disorder, you cant blame your self. This is such personal choice and a hard one at that. I send my best to you with saying this. Even if I knew then what I knew now, I would have still had my girls.
- By sweetiecat
- Posted October 30, 2009 at 10:48 pm
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I agree, I wouldn't get an offical diagnosis until you decide if adoption is the route you want to go. Although you have a mild case of Nf that doesn't mean your children will. So, think about that. This is a very personal decision. I would spend sometime in prayer over it. Best Wishes.
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