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Any Non-surgical Medication For Neurofibrosis?

Posted on Wed, 4 Jul 2012

Question: I have been diagnosed for neurofibrosis.are there any medicines available to cure this?Is surgery only option?Is surgery safe?Please clarify.
Thanks & Regards, XXXXXXX

Answered by Dr. Shivakumar S. Kupanur (1 hour later)

Hello,

Thanks for posting the query.

Neurofibromatosis is a genetic inherited disorder. As far as treating it is concerned, unfortunately, there is no cure for it. Surgery can be required when compression of other organs or structures. There are no medicines to cure this disorder.

Surgery is usually safe. It needs individual evaluation by Neurosurgeon for status of disease before surgery.

I hope, I have answered your query. I will be available for follow up queries if any.

Regards

Above answer was peer-reviewed by : Dr. Prasad

Follow up: Dr. Shivakumar S. Kupanur (14 hours later)

Sir,
I have many small boils or cysts like formations more on my back.I feel they are increasing in numbers ,also one has become very big.Thinking it is some skin related problem I went to skin doctor ,she daignosed it as neurofibromatosis and has asked me to go to a cosmetic surgeon to get it removed.Initially i did not get any pain from that cyst,but now i get pain sometimes.
Sir,My worry is if I dont remove those cysts will it lead to cancer like disease:-(
If I undergo surgery normaly how many days it takes for recovery?
I am scared since it is nerve related if there is any problem to any of my single nerve during surgery, I may end up in permanent disablity:-(
sir,I know I may be wrong in my above thoughts but want my doubts to be clarified before going surgery.
Lastly,can we stop getting new cysts or boils formation atleast?
Sir,if u r from Bangalore where and when can I XXXXXXX you please let me know.
Please clarify my above doubts.
Thanks & Regards, XXXXXXX

Answered by Dr. Shivakumar S. Kupanur (2 days later)

Hello again.

Sorry for replying late.

Removal or non removal does not affect malignant transformation of disease. There is overall risk of less than 10% of lesion turning into cancer.

You can undergo surgery for bigger lesions if it is causing compression. It will take Approx 1 week to recover.

Rarely may it involve spinal nerves. But, usually it will not happen. This also depends upon surgical skill of surgeon. You may feel little numbness after surgery for few weeks.

Unfortunately, there is no way to stop new lesion formation.

I am practicing in Bangalore only. You can contact me on this forum for any further issues.

I hope, this answers your query. I will be available for follow up queries if any.

Wish you good health.

Regards.

Above answer was peer-reviewed by : Dr. Shanthi.E