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Last Updated: February 03rd, 2012
There are advantages and disadvantages of each medical option: Microsurgery, Radiation and Chemotherapy. Knowledge of which will help you make better medical decisions when choosing when talking to your doctors.
Index
- Observation - Watch and Wait
- Monitoring Tumor Development - MRI's
- Clinical Trials - Tumor Suppressor Medications
- Supplements - Botanicals
- Microsurgery - Surgery Options
- Radiosurgery - Radiation Treatment
- Hearing Implants
- More Information on NF2
Observation - Watch and Wait
Individuals diagnosed with NF2, who are asymptomatic may not need treatment immediately, but should get regular MRI's to have tumor development monitored. Doctors will determine how often a patient will need to undergo an MRI. Typically brain MRI's should be every 6 months and spine once a year. Spine tumors for individuals with NF2 typically grow a lot slower than brain tumors.
Doctors will advise patients as to when treatment will be necessary as well as which types of treatment would be appropriate for a particular case.
Unfortunately "Watch and Wait" is the only advice most Neurologists give between surgery and symptom management. However you may want to consider trying to do what you can between to live a healthy lifestyle and consider nutrition and exercise as a way to potentially fight off tumor growth and as an aid to recovery from each NF2 medical concern.
Return to TopMonitoring Tumor Development - MRI's
The First test of an MRI (Magnetic Resonance Imaging) was done in 1977, but was not available for commercial medical use till 1980. MRI scans use harmless radio waves. NF2 was a lot more complicated to treat and unlikely to be properly diagnosed prior to the availability of MRI's and is making a big difference in NF2 management.
Monitoring tumor growth is allowing for better planning of treatments. Regular MRI's allow doctors to see tumors and with follow up MRI's monitor the rate of growth for each tumor. Your neurologist will help you determine how often MRI's of both brain and full spine should be taken.
- MRI vs. CAT Scan - MRI's offer better imaging then CAT Scans. CAT scans use ionizing radiation and individuals with NF2 should limit the amount of radiation exposure as much as possible since radiation can encourage tumor growth. Since people with NF2 are a lot more prone to being effected by anything that might encourage tumor growth as a result of the lack of the tumor suppressor gene MERLIN, CAT scans should be avoided.
- MRI's and ABI's - Anyone with an ABI (Auditory Brain Implant), needs to make sure to ask and confirm that the MRI strength is not more than 1.5Teslas. Anything more than that can hurt you or damage your ABI.
Clinical Trials - Tumor Suppressor Medications
While none of the current medications given to us have been found to completely stop ALL tumor development in individuals with NF2, or even work for everyone, that they help at all is a good sign of advancement in winning the battle against NF2.
More information on those can be found here: Tumor Suppressor List - Chemotherapy
Return to TopSupplements - Botanicals
There are Supplements and Botanicals each of us with NF2 may want to consider. None of the Supplements or Botanicals is as potent as the Chemo therapies available as options for NF2. The main advantage of this is it means these are things that can be taken long term to help overall health as well as to assist in slowing down tumor development to not reach a critical point as fast as simply doing nothing.
None of the supplements are in an official medical trial in the US at this time and while the NF2 community has started a database to collect and compare general data from those of us on BIO30. Many of us who have taken Bio30 / Propolis are finally seeing some stabilization. However this leads to 2 issues:
- A comprehensive database needs to be designed to understand if these supplements are actually helping or results seen is actually only a result of natural tumor random stabilization rate, which periodically happens in NF2 tumors.
- Since it is not a medically approved option, the cost makes it difficult to stay on Botanicals consistently long term. Some of us willing to take it have not been able to even start for financial reasons.
More information on those can be found here: Tumor Suppressor List - Natural Compounds / Supplements / Botanical
Return to TopMicrosurgery - Surgery Options
Several factors determine which approach a surgeon will suggest for a particular situation. The three surgical approaches used to remove Vestibular Schwannomas (Acoustic Neuromas) include:
- Translab Approach aka Translabyrinthine - Entry point to remove tumor is through the ear canal.
- Pro: Facial Nerve has best chance at being saved.
- Con: Hearing Loss and Balance problems are guaranteed.
- Mid Fossa Approach aka Middle Fossa - Entry point to remove tumor is over and forward from the ear.
- Pro: Best chance at saving hearing, only an option for smaller tumors.
- Con: High risk of damage to the Facial Nerve and there is a chance of possible risk of problems with speech and memory.
- Suboccipital Approach aka Retrosigmoid - Entry point to remove tumor is behind and below the ear.
- Pro: Chance at saving Hearing and Facial Nerve. This has a better chance with larger tumors.
- Con: 50% of patients loose hearing and there is a high risk of consistent regular headaches.
Complete tumor removal is typical but an option that can prevent some of the damage listed in the surgical approaches previously mentioned is Surgical Debulking. The process of Debulking is when only part of the tumor removed. This option is only available when tumors are over a certain size based on location. There is no way to know how long it might take for the tumor to grow back to the size it was at before being partially removed and would require additional treatment to prevent. At the minimum the tumor size should be very closely monitored, but Chemotherapy might be recommended.
Return to TopRadiosurgery - Radiation Treatment
Radiosurgery also known as Stereotactic Radiosurgery (SRT), is not invasive. In this method, a CAT scan is first taken, a computer then uses a precise high powered dose of Radiation to a tumor. Dose of radiation, number of treatments, how often treatments need to be given, and which type of Radiosurgery Device is used depends on tumor type, size and exact location.
The following should be taken into consideration when making your decision for one of these treatment types:
- Since the goal with Radiosurgery is to prevent a tumor from not growing larger, it may not be known if the treatment is effective till months later.
- Surgery for tumor removal in the area Radiosurgery treatment was given is often more complicated for surgeons to remove.
- Radiosurgery is not an option on the side of the brain an ABI (Auditory Brainstem Implant) is on since the treatment would damage the ABI.
- With the tumor suppressor gene missing, as is the case with individuals with NF2, Radiation treatments can increase the risk of Cancer in the areas treated with Radiation.
- Radiosurgery may damage brain matter in the surrounding area, but since the brain is not cut open recovery time is minimal in comparison to surgical methods.
Forms of Radiosurgery Treatment Types include:
- Gamma Knife
- Cyberknife
Hearing Implants
CI (Cochlear Implant): In some cases,, patients auditory nerve will still be intact after an acoustic neuroma is removed and the nerve may be functioning well enough for a patient to benefit from a CI.
ABI (Auditory Brainstem Implant): The majority of NF2 patients use an ABI. In many cases during surgery to remove acoustic neuromas, the auditory nerve is severed or not functioning well enough us to benefit from a cochlear implant.
Return to TopMore information on NF2 see: What is NF2?
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