Fibromas on scalp

has anyone had any fibromas removed from their scalp? Im having surgery to remove the last of the tumor from shoulder and he is going to remove a few other ones from my torso. Im going to show him the one on my scalp but I dont know if I want to get it removed. Also Im very excited because Im finally going to get to meet some other NF'ers. On the 29th there is a symposium in Coralville IA. Should be an interesting day all around

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Hi honor.
This past april I had 3 removed from my scalp. Everything went well. I had surgery on a thursday and was back to work on monday.
let me know if have any other questions.

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I have one in my scalp which I plan to be removed...

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I have several . When combing my hair irritates them I have them removed

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I have had at least a dozen removed from my scalp that were painful. I am very glad I had them removed. My quality of life is improved as I can more easily have my hair washed, brushed, and styled. A scratch to my head no longer immediately reminds me of my NF.

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Had couple on my scalp removed one came back and had re removed
Only downside is area that shave hair never really grew back 😣but thankfully was in back head were my hair able to cover the then out spot . Have several more that are on scalp but will do wait and see game.Good luck

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I have quite a few on my scalp which don't bother me too much. I don't even know they are there unless I drag my hands through my hair. I do keep my hair should length so they cant be seen by anyone else. I hadn't even considered having them removed with the exception of one which is a little larger than the rest. However if the doctor said to me he could have to shave my hair in that spot I would probably forgo having it removed.

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I did not have to have any hair shaved when the neurofibromas under my scalp were removed.

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Thanks everyone. the one I have isnt that big, my only concern is if its growing on the inside. thats what happened to the one on my neck. Its wasnt very big on the outside but on the inside it was growing into my spinal cord. that being said, and as vain as this sounds, i dont really want to have part of my hair shaved. I've been letting it grow out, it kinda helps me feel a little better since Im getting so many on my face. I think I will talk to the Doc about it and see what he thinks. I truly value his opinion and I will go with his decision.

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hello I have had about 12 removed all were quite big, but it was not painful after surgery and they heeled very quickly, and I only have a few small ones left, but when hair grows you can see them ,and where most of the nf cant be seen on other parts of your body they can on the head, so I was so pleased they was removed good luck

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So, how did it go? Did you have them removed? I also have three on the scalp...

- K

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I have them in the scalp and I want to get them removed but don't want my hair to be cut

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Surgery went well. The fibroma on my shoulder is almost completely gone. Im waiting for the swelling to go down and he stitches to come out to really see how it is doing, but it looks 100 times better than it did. As for the one on my head he was able to take it off pretty easily. He said afterwords that it was bigger than he initially thought but he got it off with no problems. And he only had to shave a little bit of my hair to get to it. In fact you cant even tell unless I hold my hair up and pull it apart. Which I am grateful for. Im not really that vain but I've been growing my hair out for along time now and I really didnt want a big old bald patch of course it was in the back of my head so I couldnt have seen it anyway :). It does itch like crazy though

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I have quite a few on my scalp but have never had them removed...seems I have gotten more lately. They itch all the time-esp the ones near my neck. I would be worried about having bald spots if I had them removed.
I'm still waiting for that miracle pill or injection to just make them go away forever.

Good luck with your surgery.
;)

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i NF1 I have few nodules on my scalp. I have one large one on my scalp had it for a few years. I have enough hair to cover up the big one and cover up some small one. I had this nodule for so long that its part of me. If it does get any bigger than what it is then I will decide to take it off. In the past I had nodules taken off my forehead, chin, wrist and arms(where they had not return) I just recently had two taken off my upper part of my leg. Good health to all NF1&2

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The entire right side of my scalp is/was covered with them. Have had the removal done 2 times over 10 years. Not going to lie I had a painful recovery and had to shaved my head for the first one and chop all my hair off for the second but it was so covered I needed the surgery. After more than 100 staples and massive scars my hair hair covers it mostly. I think it's worth it. However not sure if I'd do it a 3rd time. Luckily I had a great surgeon. He tried to make the first scar smaller. The first surgeon butchered me. Research your surgeon!!!!

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