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Neurofibromatosis: Treatment, Procedure, Cost and Side Effects

What is the treatment?

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).

How is the treatment done?

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.

Who is eligible for the treatment? (When is the treatment done?)

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.

Who is not eligible for the treatment?

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.

Are there any side effects?

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.

What are the post-treatment guidelines?

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.

How long does it take to recover?

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.

What is the price of the treatment in India?

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.

Are the results of the treatment permanent?

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.

What are the alternatives to the treatment?

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.

Safety: Medium Effectiveness: Low Timeliness: High Relative Risk: High Side Effects: Medium Time For Recovery: High Price Range:

Rs. 30,000 – Rs. 39,000

Popular Health Tips

Know The Warning Signs of Brain Tumor!

MCh Neurosurgery, MS - General Surgery, MBBS
Neurosurgeon, Guwahati
Know The Warning Signs of Brain Tumor!

There is no trustworthy evidence regarding what causes brain tumors, but there are a few risk factors that have been substantiated through research. Children and young people who receive radiation around the head are susceptible to developing tumors in the brain once they grow up. Also, people with a certain kind of rare genetic condition like neurofibromatosis may develop a brain tumor though such cases are very few in number. Age is also an important factor as people aged over 65 years are diagnosed with brain tumors at quadruple times higher than children and younger people.

Types of Brain Tumours:

A primary brain tumor originates in the brain, and they may or may not be cancerous. Some tumors can be benign, which do not spread in the surrounding tissues and are not very malicious. However, that does not signify that they will not cause any harm over time. Sometimes these tumors can be severe and cause a threat to the life of the sufferer. The National Cancer Institute reports that approximately there were 23, 380 fresh cases of brain tumors in 2014.

Identifying the Symptoms of Brain Tumors:

The symptoms of the brain tumor are dependent on various factors such as the size, type as well as the exact location of the tumor. These symptoms are triggered when any tumor is pressed or clashed against a nerve or disturbs a part of the brain. Symptoms are also felt when any tumor particle blocks the fluid flowing around the brain or when there is a swelling in the brain owing to the build-up of fluid.

Common symptoms include: headaches that get worse in the morning, nausea along with vomiting, an alteration in the speech, hearing and imbalances in walking and movement, mood swings, change in personality and ability to concentrate or remember things and seizures or convulsions.

Treatment for Brain Tumor:

Surgery is normally the most usual treatment for brain tumors, and the patient is given anesthesia, and the scalp is shaved before the surgery. Then, craniotomy is performed to open the skull, and the surgeon removes a bone piece out of the skull. Then the tumor is removed as much as possible. The bone is then restored back, and the incision on the scalp is closed. Sometimes surgery is not viable in case the tumor has developed in the brain stem or some other complex parts.

Neurosurgeons can surgically remove some tumors completely (called resection or complete removal). If the tumor is near sensitive areas of the brain, neurosurgeons will only be able to remove part of it (called partial removal). Even partial removals can relieve symptoms and facilitate or increase the effectiveness of other treatments.

The role of surgery in treating brain tumors:

Surgery can provide:

  • The complete removal of some brain tumors
  • A sample to enable doctors to diagnosis the tumor and recommend the most appropriate treatment
  • Better quality of life:
    • Reduced symptoms and improved ability to function (e.g., to think, speak or see better)
    • Less pressure within the skull from the tumor
    • A longer life

In case you or any of your near ones is affected with brain tumor, you should visit the doctor to know the possible treatments other than surgery and other important questions related to brain tumor.

2733 people found this helpful

Popular Questions & Answers

please sir i'm suffering from neurofibromatosis no family history regarding this disease, i'm 22 year male so please sir tell me medicine.

MBBS, M.S. General Surgery, M.R.C.S. England, M.Ch. Surgical Oncology, DNB Surgical Oncology, FEBS Surgical Oncology, DNB General Surgery, MNAMS, FMAS, FIAGES, FAIS, FICS, FEBS Breast Surgery, FACS, Fellowship IFHNOS & MSKCC USA, Fellowship in breast and oncplastic Surgery
Oncologist, Mumbai
There are three major clinically and genetically distinct forms of neurofibromatosis, neurofibromatosis types 1 and 2 (NF1 and NF2) and schwannomatosis. NF1, previously known as von Recklinghausen disease, is the most common type. Longitudinal care for individuals with NF1 aims at the early detection and symptomatic treatment of complications as they occur. The approach to treatment of the various tumors associated with NF1 depends upon the type of tumor, its effect on adjacent tissues, and related complications. No specific medical treatment for neurofibromas exists. Surgical treatment and pain management of plexiform neurofibromas can be challenging. Surgical resection often is limited to debulking of a specific area of a large lesion. Malignant neoplasms, particularly malignant peripheral nerve sheath tumors (MPNST), are the primary cause of decreased survival. If you want to discuss this further, feel free to contact me directly.
2 people found this helpful

Is there any positive treatment for a girl person age 28 yrs, from Neurofibromatosis. Or medicine that can reduce the small lumps, on her hands, back and abdomen.

MBBS, DNB, Fellowship In Neurosurgery
Neurosurgeon, Kolkata
Dear lybrate-user ji, Neurofibromatosis is a genetic disease. It has no cure or no medicine. If any lump increases in size, it can be removed by small operation.
3 people found this helpful

I am 23 years and suffering with neurofibroma at the age of 10 a surgery is done before that surgery I have only 4 tumours on my body but now I got the the tumours all over my body and on my face also. Is laser surgery is good to remove this tumours? please refer one gud hsptl in India.

Homeopath, Hooghly
No ,, surgery won't cure this problem,,if u wants to cure ur problem then u have to do proper homoeopathic treatment,,only by proper homoeopathic treatment it can be restricted,
1 person found this helpful

My dad is having neurofibromatosis. There are many lumps is his entire body any cure for that. X.

MBBS, MD-Pediatrics
Pediatrician, Kolkata
This is genetic disease, lumps are increasing (both size and number) in advancing age. Disease is not curable. Treatment require when mass causing local effect.

Table of Content

What is the treatment?
How is the treatment done?
Who is eligible for the treatment? (When is the treatment done?)
Who is not eligible for the treatment?
Are there any side effects?
What are the post-treatment guidelines?
How long does it take to recover?
What is the price of the treatment in India?
Are the results of the treatment permanent?
What are the alternatives to the treatment?