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Neurofibromatosis?

Started by Carl Myers26 · · 👁 3 views · 8 replies

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Participants Carl Myers26Lawrence WellsAngela Wright
Carl Myers26 Carl Myers26 NewcomerOP
5 messages
joined Feb 2008
#1 ·
Hi everyone, let me start by laying everything out...
Basically, over the last two or three months, I’ve noticed these little lumps appearing—it looks like fatty tissue, though I honestly have no idea what they actually are. They're about the size of marbles, mostly concentrated around my thighs...
I’ve actually had one larger one, maybe an inch or two long, for quite a few years now. It never really bothered me, though, since it wasn't painful. Back then, I saw a couple of doctors, but nobody could tell me what it was, so I eventually just gave up on it...
But then, as I mentioned, about ten of these smaller lumps popped up in the last few months. One of them actually grew to match the size of the old one in just a matter of days (thankfully it seems stable for now and isn't growing anymore)...
I went to see my primary care physician, who referred me to an orthopedic specialist. At first, he was just as stumped as the others; he even asked if I had some kind of allergy to animals, thinking maybe that was the cause. But I’m not allergic to anything, and I can't even remember the last time I was around an animal...
Ultimately, though, he suggested it might be neurofibromatosis, but he admitted he couldn't know for sure until he removed one and examined it under a microscope...
Following that, I saw a neurosurgeon, who recommended I get an MRI of my brain and an abdominal ultrasound before proceeding with a biopsy...
I’ve already done the brain MRI and the abdominal ultrasound, and both came back clear. Everything looked fine, although the technician did mention I have a folded gallbladder—supposedly something I was born with—and a slightly enlarged spleen, or something to that effect...
Now, I’m scheduled for the biopsy on this neurofibroma in a few days, and I’m wondering: is there any risk that this biopsy could cause harm?
I've also noticed a few smaller lumps near my elbows, which feel more like they're just under the skin, unlike the ones on my thighs...
If this really is neurofibromatosis, I assume it's some kind of hereditary condition...
My GP actually told me there's no real need to bother with the tests or the biopsy, implying it’s nothing to worry about and that I'll probably live to be a hundred regardless...

Has anyone here dealt with something like this? And is there any way to at least stop new ones from appearing, or even get rid of the ones I already have?

Any advice would be greatly appreciated, thanks!
Lawrence Wells Lawrence Wells Regular
312 messages
joined Jun 2006
#2 ·
So, did your primary care doctor actually send you over for an MRI? Honestly, I think a biopsy would be a huge help here—you really won't know what kind of tumor we're dealing with until that's done.
Carl Myers26 Carl Myers26 NewcomerOP
5 messages
joined Feb 2008
#3 ·
Michelle Cook83 said:Did your primary care physician actually refer you for an MRI? Honestly, a biopsy would be incredibly helpful here, because you won't truly know what kind of tumor you're dealing with until they get those results back.

It wasn't my GP, actually—it was a neurosurgeon who ordered the MRI...
I mean, I get that a biopsy tells you exactly what type of tumor it is, but I guess there's a risk involved, right? Like, could it cause issues if they end up removing something they weren't supposed to?
And regarding the biopsy itself—if they just take a sample versus performing a full resection of the neurofibroma, does that change the recovery? I wonder if someone can walk around just a few hours after the procedure, or if it takes much longer than that.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#4 ·
I think you've got lipomas. My boyfriend actually has them all over his arms and legs, and he just stumbled upon one on his back the other day. Basically, a lipoma is just a benign fatty tissue tumor. If they really start bothering you, you can always have them surgically removed.
http://www.chennaionline.com/health/...s/lipoma02.jpg
Carl Myers26 Carl Myers26 NewcomerOP
5 messages
joined Feb 2008
#5 ·
Angela Wright, I guess that might be what we’re looking at. Thanks for helping me wrap my head around it, but I suppose I won't know for sure until I get the biopsy results back...

To be honest, I have two spots just like the ones in this photo on my thighs. They aren't quite as obvious since there's hair covering them 😁, but the others can definitely be felt if you run your hands over them—even if they don't stand out visually like these two do...
If I'm being real, the psychological aspect of this bothers me way more than the actual physical sensation...
As for the ones on my arms, I only noticed them by touch recently; you can barely see them with the naked eye...
I usually notice them after a workout at the gym, like they start "acting up" a bit, though they don't cause any real medical issues...
By the way, did your boyfriend end up getting a biopsy, and did he have any of them removed?
And is there some kind of medication or treatment to stop more from popping up? I'm assuming there isn't, but I figured it wouldn't hurt to ask...
Lawrence Wells Lawrence Wells Regular
312 messages
joined Jun 2006
#6 ·
Relapses can happen after you get cleared, though—it’s not exactly common.
Carl Myers26 Carl Myers26 NewcomerOP
5 messages
joined Feb 2008
#7 ·
So, I went ahead and got the biopsy done, and the results are back—it turns out it’s just an angiolipoma.
Lawrence Wells Lawrence Wells Regular
312 messages
joined Jun 2006
#8 ·
There’s nothing to be afraid of when you're dealing with something benign. In your case, we're just talking about a little cluster of fatty tissue and blood vessels. Don't worry, be happy🙂
Carl Myers26 Carl Myers26 NewcomerOP
5 messages
joined Feb 2008
#9 ·
Alright, thanks Piggy 👍

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