What is neurofibromatosis?
Neurofibromatosis is a genetic condition that causes the development of tumors on virtually any nerve in the body, including the brain and spinal cord. It is usually diagnosed in childhood and can be inherited from an affected parent in approximately one-half of patients. In other words, there is roughly a 50 percent chance that an affected parent will pass on the condition. In the remainder of patients, there is no known previous family history. Currently, there are 3 types of neurofibromatosis identified.
Dr. Andre Panossian has been treating patients with neurofibromatosis for more than a decade. He recognizes the unique requirements and challenges faced by individuals with NF. His primary focus is in the surgical removal of NF tumors almost anywhere on the body, including major peripheral nerves. Throughout his approach, Dr. Panossian implements a logical surgical plan that takes into account the physiology of neurofibroma tumors. He frequently meets with patients from all over the world through seminars and conferences as well as Skype. Dr. Panossian is always striving to improve surgical techniques to minimize scarring and to maintain long-term reduction of tumors.
"For many years, people with neurofibromatosis have been told that there is little to be done. Dr. Panossian believes that a thoughtful surgical strategy can improve the lives of patients living with NF."
What do I do next?
If you have neurofibromatosis, contact our office today to schedule a consultation with Dr. Panossian. He will perform a thorough evaluation at the time of your consultation and develop a treatment plan based on your unique situation. Additional diagnostic studies may be recommended. Treatment plans may include surgical excision of large plexiform neurofibromas to large volume destruction of cutaneous neurofibromas using electrodesiccation.
In addition, Dr. Panossian advocates consultation for neurofibromatosis as early as possible. Early treatment is highly desirable in order to experience the greatest improvement and the best aesthetic outcome.
Neurofibromatosis Type 1
Type 1 neurofibromatosis is the most common type with approximately 1 in 3000 people in the US having the condition. It is linked to a gene mutation, approximately 50 percent of individuals with the condition have no known family history.
Neurofibromatosis Type 2
Type 2 neurofibromatosis usually occurs within the central nervous system and the cranial nerves of the head and neck area. The main feature involves tumor formation along the 8th cranial nerve, called acoustic neuromas.
This rare condition involves tumor formation on large peripheral nerves (such as the sciatic nerve) throughout the body. It differs from NF-2 in that there are no acoustic neuromas. There are also no skin findings in most cases.
Dr. Panossian has received the highest honor bestowed by the Plastic & Reconstructive Surgery Journal, the pre-eminent publication of the American Society of Plastic Surgeons. Read about his ground-breaking smile reanimation technique.
The mainstay of treatment, surgical excision is the primary intervention for neurofibromatosis. In simple terms, it involves surgically removing large tumors of the skin and underlying tissues through a traditional incision. However, there are many considerations in the treatment of individuals with neurofibromatosis. A strategy must be developed preoperatively for safe removal and for optimal results.
This newer treatment for neurofibromatosis targets the multitude of surface tumors that can occur in Type 1 NF. These tumors typically occur in patients who are in their 20's and 30's and continue to enlarge over time. They also multiply in number causing significant disfigurement in some people. Electrodesiccation is a treatment that destroys tumors of a certain size by the hundreds.
Treatment of neurofibromatosis must be initiated early before the development of large tumors. No longer do patients have to live with neurofibromatosis or told to come back when their tumors become a problem. There are surgical options available for virtually every patient.
In our practice, we advocate EARLY surgical treatment of neurofibromatosis. Neurofibromas can often be removed more expediently and completely without large disfiguring surgeries when they are small. Whether a large plexiform neurofibroma or smaller clustered cutaneous neurofibromas, treatments tend to be more effective when caught early. Dr. Panossian recognizes the frustration that many patients have when they seek medical advice from their doctors. Although a relatively common condition, much of medical practice is out of touch with recent interventions. To avoid confusion, feel free to contact our CA office ahead of your consultation, if you need your questions answered. We service clients from Glendale, Santa Monica, Arcadia and all California.