Discussions By Condition: Medical Stories

Neurofibroma - Now Two?

Posted In: Medical Stories 2 Replies
  • Posted By: Mom_2_Abby
  • November 22, 2009
  • 04:33 PM

Hello All. I was found to have a solitary Oral Neurofibroma (hard palate) about two years ago. The Oral surgeon removed it and missed part of it. Now, I have another one. I am scared! There does not seem to be much information related to Neurofibromas with no relation to NSF1 or NSF2. I am calling tomorrow to make an appointment at Cleveland Clinic. Does anyone know anything about these? Do you think I need genetic testing? I am a 40 year old female with no prior symptoms. Although at one time I remember developing a lump at the top of my spine/neck which has since disappeared. (was as a teenager). I am lost and confused!

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  • Hello All. I was found to have a solitary Oral Neurofibroma (hard palate) about two years ago. The Oral surgeon removed it and missed part of it. Now, I have another one. I am scared! There does not seem to be much information related to Neurofibromas with no relation to NSF1 or NSF2. I am calling tomorrow to make an appointment at Cleveland Clinic. Does anyone know anything about these? Do you think I need genetic testing? I am a 40 year old female with no prior symptoms. Although at one time I remember developing a lump at the top of my spine/neck which has since disappeared. (was as a teenager). I am lost and confused!Hii I would like to share something with you. I am also suffering from neurofibroma but few days ago someone suggested me to perform few yogas and i am practicing those yogas every day and now my tumors/cysts are getting reduced in size and i am confident that it will remove completely. The yoga which i am performing are (1) Kapalbhati pranayama (2) Bhastrika pranayama I am sure if any suffering from NF will practice these yoga asan then he will feel the benefit.
    jayantbesu 3 Replies Flag this Response
  • jayantbesu : can you please tell me if you are seeing more progress on your cysts? I have neurofibroma in my hands and also in my face. I am desperately looking for a way to reduce or atleast stop any more new cysts. I have started yoga for the past 1 month and am not seeing any progress. I am seeing more cysts appearing.
    Anonymous 42789 Replies Flag this Response
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