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Neurofibromatosis: MRI can help! March 11, 2008

Posted by tomography in Cancer, MRI, Radiology.
Tags: , , ,

Today, I was browsing WordPress randomly, and I came across a blog titled Neurofibromatosis Cafe. It is run by Reggie Bibbs, who has a rare disorder called neurofibromatosis. NF is an autosomal dominant genetic disorder, and it has two types:

  • NF 1: Incidence 1:3500
  • NF 2: Incidence 1:40,000

NF 1 is characterized by skin lesions (neurofibromas), hamartomas of the iris, pigmented birthmarks, and tumors of the optic nerve. A typical example is shown here:


NF 2 is characterized by bilateral acoustic neuromas on the vestibulocochlear nerve. Here is a CT scan showing an example of NF 2 (black arrows):

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The problem with neuromas is that they are very difficult to operate and may cause serious symptoms, though benign. A team of surgeons at the Mayo Clinic reported that they can identify patients with confidence whose operational outcomes would be favorable using an 3-Tesla MRI scanner. This is great, because we are talking about a rare disorder, therefor surgeons cannot get adequate experience to operate neurofibromas with high success. If the surgeon is able to visualize the anatomical position and relation correctly beforehand, then the operation will more likely succeed.

This new technology allows a multidisciplinary approach to be performed safely in these rare tumors that were once considered unresectable, says Dr Spinner.

If you would like to get more information, I recommend the following articles and websites:

And a video from YouTube:

– Andras



1. Bill - April 1, 2008

For those looking, more useful medical information about neurofibromatosis can be found here.

2. tomography - April 2, 2008

thank you very much for this useful link! It is by all means thorough and complete! Great suggestion.

3. Kristi - February 11, 2009

Your pic of “Typical example” is actually a RARE example of the disease. I have NF 1, as do a few people I know…..

4. Amy Yowell - June 27, 2009

My son has NF 1 and he doesn’t have any of the tumors like shown here in this picture. He does have several LARGE ones inside his body that are wrapped around his esophagus, his spinal column and his airway. Pretty much the only two things in that general area that aren’t wrapped in neurofibromas are his heart and lungs. As they grow, they are afraid that they will close his airway but we are hoping to find something to help get rid of them or at least slow them down. I have written a book about him and our lives and I have learned so much about NF patients and their families through talking to others. I think my next book will be a book about different NF patients and what they go through with this disease and how they are affected. You can come to my blog if you like http://www.MyMommyNeedsALife.com. My son will be 13 in a few months and we are very lucky to still have him.

5. Laura - November 2, 2009

me and my son has NF …look at nf.org..they have a lot of inof be good for and camp

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