Treatment Management

Last Updated: 03/28/17

Management of developing tumors includes a list of options, for both surgery and health recovery. Learn more here.

1. Hospitals / NF2 Treatment Centers

Treatment and managing NF2 is not just about surgery, it is about managing all of the issues caused by NF2. This means, being able to locate different types of doctors, physical therapists and special sources who have also dealt with NF2.

2. Individual Tumor Management

Microsurgery (Surgery)

Microsurgery, to remove either a brain or spine tumor to alleviate brain or spinal cord compression is not without risk.

Tumor removal, is currently the most effective means of tumor management for NF2 at this time. However, since this only helps one tumor at a time and individuals with NF2 tend to have a vast number of tumors, a better treatment needs to be found.

Radiation Treatments

Several different radiation treatment options for the treatment of inoperable and recurrent benign NF2 tumors are available.

While radiation is an option in specific situations, it is important to understand the questions surrounding these treatments and issues that could arise. Radiation treatment may be the choice to take care of an immediate tumor problem; but can mean the start of problems months or even years later. These pros and cons should be thoroughly discussed with your doctors in order to make the right choice for you. Radiation treatments, tumor removal (microsurgery) or doing nothing (watch and wait) are currently the only three options. This section aims to educate you on the good and bad of radiation treatment so that when you are discussing your MRIs you'll know the hard questions to ask.

3. Targeted Tumor Treatments

Currently no Tumor Suppressor Medications have been proven to be 100% effective to helping NF2, however several are in different stages of Clinical Trials. There are a few options that have been found to have some success, but different forms of Microsurgery (Traditional Surgery) and Radiation are still the primary method in treating NF2 tumors.

Tumor suppressors are medications that are possible treatments for NF2 might be referred to in different sources by different chemical or inhibitor type, current options are only Targeted Tumor Treatments that are able to help only one tumor type, not all. This is an serious issue in tumor control since individuals with NF2 can face up to three tumor types that may cause issues; Schwannoma, Meningioma and Glioma (Astrocytoma or Ependymoma)

4. Hearing Loss Options / Hearing Implants

NF2 eventually leaves most of us at least HOH (Hard of Hearing), if not completely deaf. The auditory nerves are the most commonly damaged before any other nerves. Traditional hearing aids will not help, but there are other options.

5. Long Term Management / Observation

Individuals diagnosed with NF2, who are asymptomatic, may not need treatment immediately. However, you should get regular MRI's to have tumor development monitored.

6. Health Recovery

As each tumor grows, damage develops to the nerves in the surrounding area as well as the nerves the tumor might be attached to. After treatments to stop the development of the tumor, physical therapy and other treatment options are often the determining factor in how much recovery will occur.

7. Preparing for Surgery

Certain Medications, Vitamins, Herbal Supplements and Herbs taken regularly can have a harmful effect if in the body during surgery.

8. Medical Confidentiality

There are many reasons medical confidentiality is important to individuals with NF2 or any long term health condition.

9. Better Health

The constant damage to the body resulting from tumor growth and treatments to manage them make proper nutrition and exercise very important for the perpetual recovery process of nerve damage and low immune system from the constant fight.

10. Stem Cell Treatments

Research using stem cells is probably the most controversial area of scientific research today. The ethical controversy has resulted in delay of treatments. Stem Cells are so early in development, all uses are still experimental and will continue to be so for some time.

Researchers have since found new methods of acquiring stem cells that would not require the use of the initial controversial method. In fact the newer uncontroversial methods are proving better methods for obtaining stem cells.

11. Medication Side Effects

Seizures, Tinnitus, Dizziness and Headaches are not always from tumor pressure, tumor change or even your actual treatment, but instead from pain and other treatment medications. Read the side effects for; Aspirin, Codeine, Oxycodone/Acetaminophen (Percocet), Prednisone (steroid) and Morphine (Injection).

12. The Cost of NF

Three forms of Neurofibromatosis (NF?): NF Type 1 (NF1), NF Type 2 (NF2) and Schwannomatosis (SWN) are very different, but they all result in the growth of slow growing but still painful, dangerous, potentially life threatening tumors. There is no treatment to permanently; stop, shrink and prevent more NF tumors from growing, but all NF tumors do not require treatment.

The constant need to see doctors, purchase medications, have different medical test and treatments are a financial burden that results in issues that increases the risk of the dangerous, life threatening health issues, when not lowering the quality of life due to financial limitations.

Read more to understand; the unfortunate aspects of NF, why a cure for each NF type is needed and why it is to the advantage of many other than people with NF to find a cure.

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