Neurofibromatosis: Treatment, Procedure, Cost and Side Effects

Neurofibromatosis is defined as a genetic disorder that leads to the formation of tumors on the nerve tissue. The development of tumor can occur at any place within the nervous system, including the nerves, spinal cord and even within the brain. The tumors that form in this case are usually non-cancerous (benign). However, a few cases, though rare, has been reported regarding the development of malignant tumors. This problem is generally diagnosed within a person in their childhood or during early adulthood.

There are mainly three types of neurofibromatosis. These are neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis. The symptoms of NF1 involve occurrence of flat light brown spots on the skin, freckling in the groin area or armpits, bone deformities, formation of tumor on the optic nerve, tiny bumps on the iris of the patient’s eye, soft bumps under the skin, headsize larger than average. Symptoms of NF2 involve headache, visual problems such as cataract, balance difficulties, partial or total deafness, numbness or weak arms and limbs and multiple benign tumors. Schwannomatosis involves the formation of tumors within the schwann cells or glial cells and is accompanied by acute pain and requires surgical treatment.

The treatment begins with diagnosis which involves reviewing of the patient’s medical history and family history followed by various physical examinations. The physical examination of the person includes examination of the eyes and ear, genetic studies and imaging tests such as Xray imaging, CT scan and/or MRI to detect bone deformity or tumors in brain and spinal cord.

Once the type of neurofibromatosis is determined the treatment begins and it involves surgical methods to remove tumors, stereotactic radiosurgery, use of auditory brainstem and cochlear implants, radiotherapy and chemotherapy (if the patient is detected with malignant tumors).

The treatment of neurofibromatosis begins with diagnosis of the symptoms of the patient. It is recommended that the patients having neurofibromatosis should go for treatment under the care of an experienced doctor, as soon as possible, for better and effective results. The diagnosis of the patient for such a condition involves reviewing the patient’s medical history and family history as well as other physical examinations. The physical examinations for the treatment of neurofibromatosis includes monitoring of blood pressure of the patient, growth and development, eye and ear examination, checking for skeletal deformities and imaging tests such as Xray imaging, CT scan and MRI to detect bone deformity and formation of tumors in brain and/or spinal cord. It should be remembered that the problem of neurofibromatosis cannot be totally cured, but the treatments that are available can reduce the signs and symptoms of the condition.

The patients having neurofibromatosis type 1 (NF1) are recommended to visit their doctor for yearly checkups. The checkup involves examining of the patient’s skin for newly formed nuerofibromas or changes in the pre-existing ones, monitoring for symptoms of high blood pressure, eye and ear examination, checking for skeletal deformities. Imaging studies such as Xray imaging, MRI and CT scan assists in such diagnosis. Though the possibility for such tumors to be cancerous is rare, a thorough check up is necessary to rule out the chances for cancer. In cases of severe symptoms, the doctor might even recommend for surgical treatments if necessary.

For patients having neurofibromatosis type 2 (NF2) and experiencing complete or partial hearing loss or tumor growth, the doctors might recommend for surgical treatments to remove the tumors that were causing the problem. Stereotactic radiosurgery might help in cases where the patients of NF2 are suffering from hearing loss. Radiotherapy and chemotherapy is given to the patients if they are diagnosed as having cancer.

Patients having flat light brown spots on the skin, freckling in the groin area or armpits, bone deformities, one or more tumors on the optic nerve, tiny bumps on the iris of the eye, soft bumps under the skin, headsize larger than average, headache, visual problems such as cataract, balance difficulties, partial or total deafness, numbness or weak arms and limbs and multiple benign tumors accompanied by acute pain, may go for diagnosis after consulting an experienced doctor. Once the problem of neurofibromatosis is detected, such patients are eligible for the necessary treatments.

It is always recommended that if a patient is having the symptoms of neurofibromatosis then he/she must go for its treatment under the supervision of an experienced doctor, at a young age, as soon as possible. Patients, who are aged enough and cannot withstand the trauma of radiotherapy, chemotherapy and surgical treatments which may be necessary for treating the conditions, are not eligible for the treatment. In addition to this, the patients who do not have the symptoms for neurofibromatosis are not eligible for the treatment.

The treatment of neurofibromatosis does not generally have major side effects. However, in case some major side effects are seen to occur, then the patient must immediately consult his/her doctor. Some of the side effects of the treatment of neurofibromatosis include headache, nausea, skin rash, impaired wound healing, irregular menstrual cycle, fatigue, dry throat, dry skin, dry eyes, cracked cornea, heart problems, premature ovarian failure, rectal bleeding, brain bleeding, gastrointestinal bleeding, high blood pressure, stroke, hoarseness of voice, nasal septum perforations, nephrotic syndrome, taste change, sensitive tongue, back pain, abdominal pain, dry sinuses, inflammation of nose and others.

It must be kept in mind that there is no complete cure for the problem of neurofibromatosis. However, only the symptoms of the problem can be treated. The post treatment guidelines of neurofibromatosis involve taking the prescribed medicines regularly on time and taking rest if the patient has undergone surgical treatment. If the patient is diagnosed with cancer (though rare), then he/she must go for radiotherapy and chemotherapy regularly as directed by the concerned doctor. In case the patient suffers from any side effects from the treatment of neurofibromatosis, then he/she must bring this to the notice of the concerned doctor, as soon as possible.

The problem of neurofibromatosis, being a genetic disorder, has no complete recovery as such. Only the symptoms that develop within the persons suffering from this problem, can be treated temporarily by medication, surgical methods, radiotherapy and/or chemotherapy. In case a patient suffers from any side effects of the treatment then he/she should consult a doctor as soon as possible. It is recommended that the treatment of neurofibromatosis should begin at a young age, when the symptoms of this problem first appear, in order to get effective results.

The treatment of neurofibromatosis is achieved by medication, surgery, chemotherapy and/or radiotherapy. The cost of the overall treatment of this problem in India is lower as compared to the other countries and it ranges from about Rs. 30,000 to Rs. 40,000. The treatment for neurofibromatosis is available at the reputed hospitals in all metropolitan cities of India.

To be honest there is no permanent cure for the problem of neurofibromatosis. However treatment of patients suffering from such conditions can be done in order to recover them from the symptoms that occur in such cases. Patients suffering from such condition might need to take regular medicines or go for surgical treatments in order to suppress the symptoms that occur due to such a problem.

Many recent researches have tried to find out several medications that would help to improve the conditions of patients suffering from neurofibromatosis. However, the effectiveness of these methods of treatment has not yet been full proven. It is wise for patients having neurofibromatosis, to consult their doctor for genetic counselling and various physical examinations for the early detection and treatment for this problem. Recent studies have also come up with various natural medications to help patients with the problem of neurofibromatosis. Avoiding sugar and other carbohydrates and consumption of cannabis oil, other products of cannabis, Aloe Vera juice, anti-angiogenesis herbs, green tea, liposomal curcumin are a few natural ways that have been helpful for patients suffering from neurofibromatosis.