Neurofibromatosis Support Group

I had one like that once. The doc didn't want to remove it, but I couldn't wear a ball cap because it really hurt, so I talked him into it. It has not come back and all is well. So don't worry. I had it removed in his office, took about a week to heal.

Thanks Marah I really do want it removed. It is still pretty small so I think if its done now it would be best. And if its the reasons I am getting my headache that would be better. Well it might not be the reasons for the headache but I just know that when I get my migraine and I press there it does hurt where I am pressing, but it relieves the pain from my head. That is the reason I first brought it up to my neurologist. I figure if it is a nf tumor, and I am really hoping that is all it is, then just get it out now while its easy to removed being that its small. Thanks for your reply it makes me feel a bit easier that it just might not be that complicated.

Have you ever seen a doctor that specialize in NF or a neurologist ? NF tumors can grow anywhere in or outside of the body. If you can see one of these specialist to get another opion. Not all NF tumors needs to be removed though.

I see a neurologist for my migraines, he is the one that checked it after I mentioned it to him. He did a cat scan after I mentioned it to him instead of a MRI at the time because I hate MRI and he said that we can start with that. Anyway the Cat Scan did not show anything so that is why he said it is not on the brain and wanted me to see the dermatologist and go from there. As far as removing it I think if it is a not going to be a big deal I would want it out since it does hurt and when I get my headache it is worse. I just am nervous because all the ones I have had removed have just been on my legs or arms, not really to deep and not in bad places. I go tomorrow so I am nervous to find out what he will say just because I never had to remove one like this before. But like I said it does hurt so I am hoping that removing it will also help my headaches

If an NF tumor is bothering you or causing you pain, then it needs to be removed. IMHO.

I have had several removed due to joint pain...at my cost...and it's not cheap.

The Dr I am going to takes the insurance that I have now. Another reason I need to do it soon, since I will be divorced soon and he might not take my new insurance. I am also axtious to get it done now besides the fact it does bother me, I will just keep think about it if I don't do it. Don't get me wrong I am nervous since I never had anything removed on my head and it does seem that it would be different then my arms, legs and even my back. But I shall have to talk to the Dr I guess and see what he says.

I went to the Dr today and he did remove the tumor he left it up to me and I said it does not belong there lets get rid of it. I have to say the needle did not hurt at all. I was expecting a lot worse. I have had the needles in different parts, and this was nothing. I am glad I had it done now we have to see if this was what the neurologist was talking about because the dermatologist said it was small so he didn't understand what the problem was. I did say to feel the difference between the left and right side of the head, but he just wanted me to show him where it bothered me. so I showed him the area and he said he felt the tumor, but it was small. Now what I original felt was a big bump so I have to wait until I remove the bandage to see what is going on and if what I was talking about is gone.

I have 2 lumps in the back of my head. My DR doesnt seem worried about them. he says they are fibromas. I dont worry to much about them its when my DR says the MRI shows new growth in my sinuses or wrapped around my optic nerves and corotid arteries. Those are the tumors I cant afford to have again. You'll be ok.

I have a question what does your neurologist persribe for your migrains. Mine is giving me topamax. It really doesnt work.