NO!!!!! Doctors will use that as an excuse not to remove them. Not true. I have had many removed that did not come back. One I had removed 32 years ago, when I was 16. It wasn't id'd as NF at the time, but was all wound up with nerve tissue, so I am sure it was. Had another removed 10 years ago, hasn't come back. I think if they get the whole thing, they don't come back.

no mine havent come back

I have only had 2 removed, they were wrapping (stems) around my bone in my ankle, it was an outer one that had a mind of its own and the other from my back wrapping around tissues then spine, doc said 99% chance they will not return.

when I had my hysterectomy the dr said they removed a 7 cm tumor also but could not remove more they were conserned about scar tissue and a tumor growing in or around it.

I hope this is not making you scared in re: to your question about whether or not they grow back,

NO NO NO NO NO I was tld they may come back over time but not worse. So far the one I had removed has not come back and it has been 5 years

I m not sure if you guys are talking about the ones you can see,, like the ones that are on our skin the little bumps or the pea sized ones or the internal ones, Because I was told that if they cut any off that are on the surface they may come back by the hundreds....and because I only have smaller ones on the surface I am scared to have them removed incase I get more.....Thanx everyone for your replies!!! I soooooooooo appreciate it !!!

The ones on the skin, what they told you is a lie. I don't know why, but docs don't like to remove them and will use any excuse. I think it doesn't pay enough.

they are right. They dont come back. The doctors are lazy and just dont want to remove them. Trust and believe if it was their child they would make sure its remvoed and never come back

Hi. .(I had a different axrpeince from others. I had hundreds removed and many of them end up returning. But that is in my case and everyone with nf is different. They do not necessarily come back worse. But the ones I have surgically removed to return after a couple of years... I am soooo sick of hospitals and doctors offices, and tests and procedures. I think mentally I am drained.Especially after my crainialectomy last year......

My understanding of this is that what you remove won't come back. However, it doesn't necessarily stop your body from producing more.

I'm hopeful that what you say is correct, because I know how much stress it puts on my wife at times, and it was the worry about fibromas coming back that has held us back from opting for this.

In my opinion, anything that legitemately increases hope is a good thing. And your comments may be just the thing to do so for us.

I had one removed from under my chin when I was in high school, it came back. I had it removed again, about 20 years later. It's staying gone. I think my parents took me to some idiot the first time that didn't get the whole thing.
I've had others (approx 8) removed from my face and chest over the past 5 years and they are staying away also. My genetics doc claims that the scar tissue resulting from surgery can be more problematic then the neurofibroma itsself and that they should only be removed if they are causing problems. I've never met one that isn't a problem!

all the doctors that dont help us are idiot doctors.. we should protest.. LOL no suregery no peace no surgery no peace.. just kididng...hey we have to laugh at ourselves sometimes.. im tired of crying..

I was always told they can grow back!
And that Dr's don't like to remove them BUT the Dr whol did my surgery a few weeks ago ( wasn't even going in for that) had no problem removing it when I asked him "while I'm out for this ( the other surgery) can toy remove this too?" pointing to the tumor on my shoulder and he said SURE.... I am so glad he removed that one!

gotta run more blood work to be done!

make it a great day!

My doctor(s) both have told me that they can come back, but it really depends on whether or not they were able to remove ALL of the tumor tissues.

In both of my removal cases, the lab report stated that the edges of the "specimen" were positive (not as in malignant, but as in the fibrboma tissue was still present along the edges of the removed tissue.

The one on my finger is slowly returning, but the one on my side has not shown any signs of growing back.