FAQ - neurofibroma
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I am a female with neurofibroma, could this effect my dating and social life? I'm really looking for other females who have this, is it going to be harder for me to find a man who won't judge this? Also is it going to be hard for me to have children?

Well, leave the children up to God for blessing. As you already know about neurofibroma here is what it is:

Neurofibromatosis is a genetic disorder of the nerve tissue presenting in two forms. Type 1 (Nf1) affects one in every 2,500 people world-wide. This equates to more than 23,000 people in the UK. An affected person of either sex has a 1-in-2 chance of passing the defective gene on to any or all of their children. However, everyone is at risk because 50% of cases result from spontaneous mutation in families with no previous history of neurofibromatosis.

Type 2 (Nf2) affects one in every 35,000 people world-wide (more than 1,500 in the UK) and, as with Nf1, an affected person has a 1-in-2 chance of passing on the defective gene to any of their children.


Type 1 (Nf1) – Six or more coffee colored (café-au-lait) marks on the skin in the first five years of life and/or nodules (lumps and bumps) on or just below the surface of the skin.

As far as dating - be honest and trust me - one will come around with a - "no problem" for your illness.  (+ info)


Last week I went to my dermatologist to have some bumps removed off of my neck. His office just called and told me that the biopsy he took came back as Neurofibroma and he wants to see me because he is concerned because I have so many. Does anyone know what neurofibroma is and is this something that I should worry about? I can't go to see the dr. until the middle of next week...should I be really worried? I looked Neurofibroma up on the internet, but really couldn't understand what it is or if it's dangerous.

if u have many of them then u may have whats called NEUROFIBROMATOSIS. which is of 2 types : type 1 & 2.
its not really dangerous but causes those ugly lumps here & there.
some are associated with kidney problem, hopefully yours will not.
in anycase, u may need some more investigations to rule out other associated conditions.
its not a dangerous disease or life threatening.
i wish u the best, u may try this website
http://www.emedicine.com/derm/topic287.htm  (+ info)

What should be done in case of the Neurofibroma Type 1 tumor (under the skin) becomes very painful?

I have Neurofibromatosis Type 1. One of the tumor under the skin is very painful since last 14-20days. I would like to know what should be done as normal pain-killers do not work.
Please advise.



I would like to suggest you that best solution should be taken through any physician or skin specialist. Pain killers should supress the pain for time being not the problem. And I should also suggest you that never use any pain killer for long duration otherwise other problems should arise as side effects and became the cause of some fatal disease.

take care

lucknow  (+ info)

One of my Neurofibroma (type 1) Tumor under the skin has become very painful. What should be done?

I have Neurofibromatosis Type 1. One of the tumor under the skin is very painful since last 14-20days. I would like to know what should be done as normal pain-killers do not work.
Please advise.


First and foremost, you should go to your doctor or at least contact him/her right away. Something that may not seem like a big deal to you, could be a reason for concern. Any changes in symptoms should always be reported to your doctor, because the slightest of details could change what the dr thinks. As for the pain, I'm sure your dr would also be able to help you with that. He can prescribe a pain pill that will work for you.  (+ info)

Has anyone ever had or heard of a neurofibroma?

I may have this in my right forearm, wrist and growing into my right hand. I just wondered what I might have to look forward to. I am going to get all the facts from the surgeon next week, but am nervous right now, and thought maybe if someone had personal experience, you could share, and help my scaredness a little.
Thanks for that detail. It was interesting, but now I am even more nervous. I would still like to hear from someone with direct experience, if you are out there????

My son has Neurofibromatosis, while I can't go into as much detail as the last answer, I have read up a lot on it.

Firstly, it's normal to be scared, but I am sure your surgeon will put you at ease. A simple operation may be all it needs. People with Neurofibromatosis get these their whole life, they wait til they get a few, then have them operated on. They are quite common, and some people just choose to live with them, referring them to a nuisance, more than anything.

I wish you all the best, I am sure everything will go fine. Just think of the chocolates you'll get in hospital.  (+ info)

My doctor thinks the lump in my back is some kind of a neurofibroma.Do i need to worry?

I did not talk to the doctor myself..my father did...so i don't know all the details...any help would be appreciated...oh and its in my back..my upper left side..the surgery to remove it has already been scheduled..

A fibroma is a benign growth which should be removed for a few reasons
1. in order to biopsy it to be 100% sure that the
physician's thinking is correct.
2. to prevent the growth from becoming irritated
and creating future issues when clothing rubs
against it.
3. For cosmetic reasons, especially for a young person.
4. To rule out other medical diagnoses which produce small growths such as these.

This is a normal part of health care. I would be reasonably concerned and have the procedure done and do proper follow up. I would not be overly worried or frightened.
In general, one should get all the information necessary before worrying unduly. So far, you know only that you likely have a fibroma. Whether it is attached to a nerve sheath or not remains to be seen.  (+ info)

Should I have a neurofibroma biopsied?

Found out that I most likely have a neurofibroma that the doctor will be taking out soon. It is very deep so outpatient surgery is necessary. Should I ask if they are going to biopsy it?

You should definitely talk to the doc about this - before and after. Most of the time, the docs will recognize this type of tumor as benign and no biopsy is necessary. However, if the doc finds that the tumor looks a little odd, then it might be worthwhile to have it biopsied.  (+ info)

Who is the best peripheral neurosurgeon in the U.S. to remove a neurofibroma?

My 41-year old husband needs a surgery to remove a neurofibroma from his tibial nerve, behind his knee (causing significant foot pain, weakness and difficulty walking). We are looking for the top peripheral neurosurgeon (or plastic surgeon who does peripheral nerve surgery and nerve reconstruction) to do this. Who is the best in the U.S.?

  (+ info)

What ages do people get neurofibroma?

That disease is so horrible. I'm scared of getting it. I'm 20

If you are talking about Neurofibramatosis they usually start before 9 years old and tends to get worse over time. It is genetic disease ... thus it has to be inherited. Depending on the type of disease and how bad it is, treatment may include surgery to remove tumors, radiation therapy and medicines.

Fortunately, the future for those with Neurofibromatosis future looks much brighter than it did even a few years ago. Surgical techniques have improved, and early detection of complications has led to more successful management of the disease.
You should seek help as soon as possible. Also, when going gets tough, tough get going. Read about some of the famous people that defied incredible odds to overcome the same and achieve incredulous things ... Gandhi, Lincoln, Hellen Keller ... and so on. I know it can be tough and frightening, but getting worried and depressed is not going to help you. But with a positive attitude you can make it better.

You should see a doctor as soon as possible and he will be best to suggest what is next. Remember doctor is not god, but can help you a lot. I hope you will remain positive and face challenges and become a guiding light for others around you.

Good luck,  (+ info)

Who has and how have they dealt with neurofibroma, i need as much info email me if u want thanks?

I have this condition and will be need surgery because of it and want as much info before i go under the knife, i know what it is just wondering how must have dealt with it and if anyone has had surgery if anyone has one inside near vital organs???

you could try

http://www.allexperts.com/  (+ info)

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