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Information on neurofibromas - Online Doctor Chats

Date : 21-Feb-2012
User rating for this question
Very Good Posted in: Brain and Spine
Answered by

General & Family Physician
Practicing since : 2005
Answered : 2408 Questions
User :   Dear Sir, I am new to this discussion. I am 30 year old male. I have multiple lumps all over my body. some of them are on my arms, thighs and buttocks. they are all smaller in size , around a cm in diameter, soft, round shaped. I have consulted doctors and have all the tests done way back in 2005. They said they are fatty tumors and they also informed me nothing to worry about them. Since then the number of tumors remained almost the same. I have recently visited a surgeon for removing some of them on my arms. He said they are neurofibromas simply by physical examination. And two days later i had a surgery and removed 3 of them. Now i am really confused whether I have lipomas or neurofibromas. The removed lumps are in light rose color. Moreover, in this month i am going to get married. Does they affect my married life. Can I have children like others? Neither my father nor my mother has them. I have seen lot of pictures in the internet. Most of the pictures resembles my lumps are actually lipomas. Was in confusion. Help me.
Doctor :   Hi.
Doctor :   Dr. XXXXXXXX here.
User :   hello sir
Doctor :   let me read what you have typed
User :   please go ahead
Doctor :   when you were operated, were the excised lumps sent for biopsy?
User :   the surgery was about three weeks back
User :   no they haven't sent for biopsy. doctor said no need to sent for biopsy as they are fatty in nature
Doctor :   if they were fatty in nature then they would most probably be lipomas
Doctor :   however it is better to get a confirmation done
Doctor :   visit a neurologist and get yourself examined
User :   yes you are right sir
Doctor :   request for a bioipsy
User :   ok sir
Doctor :   *biopsy
Doctor :   to see what they actually are
Doctor :   if they are lipomas, you can levae them alone, no need to worry
User :   what if they are neurofibromas?
Doctor :   if they come out as neurofibromas, then the type has to be determined to see what effects it can have in your children.
Doctor :   depending on the type, the severity will vary
User :   oh i see
Doctor :   for symptoms and complications in you and also your children
User :   i recently read about neurofibromatosis (NF). it is too early for me to dig much into it. But except multiple lumps i dont have any other symptoms.
Doctor :   that is why I suggested for a biopsy to see if they are NF
User :   As i said, my dad and mom don't have any of these lumps
Doctor :   if they are, then further investigations can be done
Doctor :   to see which type it is
Doctor :   sometimes NF can be asymptomatic also with only a few nodules/lumps present
User :   the lumps i have are on my arms, buttocks, shoulders and thighs
User :   but the pictures of patients with NF i saw on internet doesnoty resemble my lumps
User :   *does not
Doctor :   ok.
Doctor :   is it possible for you to send a picture of the lumps now?
Doctor :   if yes, send it to YYYY@YYYY
User :   in a couple of mins, i will send them sir
Doctor :   ok
User :   some more doubts
User :   recently i talked to a cosmetic surgeon through this website
User :   Once i remove them which are on my arms, wil they grow again
Doctor :   ok. what did the cosmetic surgeon say?
User :   he said nothing to worry about them. They may not pose any difficulties for you. if you want to remove some of them for cosmetic reasons, you may - like that he said
Doctor :   ok
Doctor :   you can go through this link to learn more about NF in your free time
Doctor :   WWW.WWWW.WW
User :   what i want to confirm is , do they grow enormously and throughout the body
User :   as i said i have these lumps at some places only and count is about 30-40
User :   the first few lumps i notices was about some 5-6 yrs back and that were on my arms
Doctor :   ok
User :   consulted many docs and the reply was the same fatty doposits
Doctor :   was anytime biopsy done to confirm?
User :   i am sorry sir, at the time i the doc had collected some kind of liquid from the lumps and performed some tests and later confirmed them as fatty lumps
Doctor :   ok
Doctor :   have you sent the picture?
User :   i m sending sir
User :   please give me couple of mins
Doctor :   ok
Doctor :   tell me when you have sent it
Doctor :   are you there?
User :   are you there dr. XXX ?
Doctor :   yes.. please proceed
User :   pls hold on i m sending, just took the pictures
Doctor :   ok
Doctor :   tell me when you have sent it for me to check them
User :   ok sir
Doctor :   do not worry I will wait for you to send picture
User :   I sent them
User :   please have a look
Doctor :   ok. let me check
User :   ok
Doctor :   your pictures are not very clearly showing the lumps
Doctor :   so I am unable to comment on them
Doctor :   I would reemphasize a reexamination and biopsy from the lumps
Doctor :   to have a clear picture of the disease
Doctor :   such that further prognosis can be clear and definitive treatment initiated
User :   ok sir
User :   among all the lump near buttock is larger something around 1 inch diameter
Doctor :   ok
User :   as is clear in one pic
User :   want to know u r first impression sir
Doctor :   Since I am not examining you personally I cannot give a clear impression, you will need to get it examined.
Doctor :   since there was fatty fluid associated with them
Doctor :   as supported by your history details, they could probably be lipomas
User :   alright sir
User :   the liquid they collected was white in colour
Doctor :   but getting a reexamination and biopsy will put all your questions in rest
User :   i can understand sir
Doctor :   and also tell you about the future complications if any is associated with child bearing
User :   what are the common places where say neurofibromas grow
Doctor :   it can grow in any area
User :   oh i see
User :   sorry if u feel i am asking too many questions
Doctor :   it is fine. I am here to answer your questions
User :   as i am getting married this month, i am bit worried
Doctor :   i can understand. hence the need for a biopsy to confirm is even greater
Doctor :   to get answers to your questions
Doctor :   about your children getting affected
User :   initially i was thinking them as mere fatty ones, but the surgeon who did my surgery said them as neurofibromas by simple physical examination
User :   is it possible to say anything by simply examining them without any tests?
Doctor :   by appearance a surgeon can say if they are neurofibromas, but it needs to be confirmed
User :   oh i see
Doctor :   when doing the surgery, and after surgery it was not sent for biopsy
Doctor :   and you were told that it contained fatty liquid, which again supports them to be lipomas
User :   no sir, doc said no need to send it for biopsy
Doctor :   so there is a conflict here, since it was not sent for biopsy, we cannot say for sure what exactly it was
Doctor :   since you mentioned 'doc said no need to send it for biopsy as they are fatty in nature'
Doctor :   one assumption can be made that they were lipomas which got excised
Doctor :   and with the assumption that they were lipomas, there wil not be any risk for your children to get them
Doctor :   they may or may not get them, if there excess fat deposition occuring in them, then they might get it, which will be of no harm
Doctor :   have you followed what I have said?
User :   yes sir i am with you
User :   initally i was not at all worrisome. but as and when i met my surgeon i heard a new word neurofibroma and it came to know it is heriditary. But i mentioned before my parents are free from any of these lumps. So i am bit confused to be frank
Doctor :   it is not necessary that your parents should have a manifestation, they can be carriers of the gene
Doctor :   which got passed to you and you manifest it
Doctor :   but since most of the eveidences as per your details suggest them to be lipomas
Doctor :   you can relax about them being NF
Doctor :   if you still continue to have doubts, then get them re-examine and biopsied
Doctor :   to know what exactly they are
Doctor :   and if at all they are NF, then a karyotyping for you and your parents will help you to find out
Doctor :   from where you got it, and what are the chances that your children will get it
Doctor :   have you followed what I have said?
User :   yes sir
Doctor :   is there anything else I can help you with?
User :   am having some more doubts
User :   can i go ahead
Doctor :   yes, please proceed
User :   moreover i met a doctor in my institute dispensary. he checked them by touching them. he said neurofibromas will move freely direction where as lipomas are not just beneath the skin and can freely move in all directions. Is it true? my lumps are soft and are moving freely in all directions. He also said them as lipomas
User :   i m sorry
User :   i m typing again
Doctor :   if the examination sugested them to be lipomas then they are lipomas
Doctor :   the description to you about the difference between lipomas and NF are true
User :   moreover i met a doctor in my institute dispensary. he checked them by touching them. he said neurofibromas will move freely in one direction where as lipomas are just beneath the skin and can freely move in all directions. Is it true? my lumps are soft and are moving freely in all directions. He also said them as lipomas
User :   oh i see
Doctor :   NF move along the nerve fibres in one direction or max two
Doctor :   lipomas move freely in all directions and are not fixed
User :   oh i see
Doctor :   and after examining you he said they ere lipomas, so in all probabilities they were lipomas
Doctor :   *were
User :   moreover NF tumors i found in intenet are small bumps , infact very small, numerous in number mainly found on the back side ie. below the neck .
User :   my situation resembling that of multiple lipomas
Doctor :   NF can vary in sizes, depending on the type. do not rely on information from internet, they should be correlated with your symptoms and examination findings
User :   ok sir
User :   i am madly searching the internet
Doctor :   better would be to do what I suggested, to get a definitive answer rather than getting loads of information
Doctor :   and getting more confused
User :   yes sir you are correct
User :   one more thing
User :   i read the symptoms of NF where they list some symptoms related to NF1: they are - - -
User :   The diagnosis of NF1 is made if any two of the following seven criteria are met: Two or more neurofibromas on the skin or under the skin or one plexiform neurofibroma (a large cluster of tumors involving multiple nerves); Neurofibromas are the subcutaneous bumps that are characteristic of the disease and increase in number with age. Freckling of the groin or the axilla (arm pit). lait spots (pigmented, most often a shade of brown, smooth edges(coast of XXX)[2] birthmarks). Six or more measuring 5 mm in greatest diameter in prepubertal individuals and over 15 mm in greatest diameter in postpubertal individuals Skeletal abnormalities, such as sphenoid dysplasia or thinning of the cortex of the long bones of the body (i.e. bones of the leg, potentially resulting in bowing of the legs) Lisch nodules (hamartomas of iris), freckling in the iris. Tumors on the optic nerve, also known as an optic glioma
Doctor :   do you have any of the symptoms listed under any f the types?
Doctor :   what you read is correct
Doctor :   but do you have any of these symptoms affecting you?
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