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Long Term Management (Observation)

Last Updated: 03/28/17

  1. Monitoring Tumor Development - MRIs
    1. ABI and CI Warning
    2. MRI and Volumetric Measurements
    3. History of MRIs
    4. CAT Scans
    5. Dental X-Ray Warning
  2. Medical Records
    1. Record Keeping
    2. Obtaining Records

1. Monitoring Tumor Development - MRI

Unfortunately "Watch and Wait" is the only advice most Neurologists give between surgery and symptom management. Individuals diagnosed with NF2, who are asymptomatic may not need treatment immediately, but should get regular MRIs to have tumor development monitored. A doctor, who specializes in NF2, should be helping to follow the health of all individuals with NF2. This doctor will determine how often brain and spine MRIs are required. Typically brain MRIs should be done every 6 months and full spine MRI once a year.

Spine tumors for individuals with NF2 typically grow a lot slower than brain tumors and might not need to be monitored as closely. There are cases where shorter times between MRIs should be done; first year after surgery and for anyone in a medical trial.

Doctors will advise when they feel treatment will be necessary for different health issues, as well as which types of treatments they feel would be appropriate in each case. Since there are pros and cons to every treatment, a patient knowing as much as possible can make a better personal decision.

Monitoring tumor growth is allowing for better planning of treatments. Regular MRIs allow doctors to see tumors and with follow up MRIs monitor the rate of growth for each tumor. Your neurologist will help you determine how often MRIs of both brain and full spine should be taken. You will want to live a healthy lifestyle between MRIs 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.

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1.1. ABI (Auditory Brainstem Implant) and CI (Cochlear Implant) Warning

Anyone with an ABI (Auditory Brain Implant), or CI (Cochlear Implant), needs to make sure to ask and confirm that the MRI strength is not more than 1.5 Teslas, anything more than that can hurt you or damage your implant. Also be aware that if your magnet is internal you should have it removed before having an MRI or mention it to the MRI Technician prior to starting your MRI.

Learn more about ABI's and CI's.

1.2. MRI and Volumetric MRI Results of Tumors - vMRI

When MRIs are done, a formula to find the total mass of the tumor, based on the total dimensions in 3D (3 dimensions), can be used to calculate the exact tumor mass.

To note exact change over time, vMRI data can be very helpful in determining exactly how much a tumor is changing over time. This method is currently only done for people with NF2 when they are a part of clinical trials, and normally only on the tumors that the doctors are expecting to change from the specific clinical trial being done. The vMRI data is not otherwise calculated since the process or making this measurement takes too long, when people with NF2 can have dozens of tumors that this would require calculations for.

There are numerous approaches for obtaining volumetric results. To measure the volume in a tumor, a trained MRI Technician can use a formula that includes measurements of individual cross sections of multiple MRI images to give the volumetric results. Additionally, there are some more automated methods involving computer software to calculate tumor volume, as well as a combination of both.

For more information on vMRI Methods: Measurement of Brain Volume using MRI: Software, Techniques, Choices and Prerequisites

1.3. History of MRIs

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 MRIs and is making a big difference in NF2 management.

1.4. CAT Scan

CAT Scans should be avoided. MRI's offer better images than CAT Scans. Also, CAT scans use Ionizing Radiation and individuals with NF2 should limit the amount of radiation exposure as much as possible, because 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 functional tumor suppressor protein MERLIN, CAT scans should be avoided. There are cases where CAT Scans might be necessary, but to monitor tumor growth MRIs should be done.

1.5. Dental X-Ray Warning

There is a risk of Tumor Growth with X-Rays for any reason. Learn more about Tumor Growth and NF2.

2. Medical Records

2.1. Record Keeping

It is important to keep your own records of your health situation. An individual with NF2 frequently requires visits with multiple doctors sometimes in various treatment locations. While it can help to have as many medical treatments done at the same facility, for an easier share of medical information between all of the doctors that might be assisting you, even in the same facility records are only kept so long.

Things you should have on personal record:

  • Copies of MRIs (in either print or digital format) and MRI Reports.
  • A list of medications and supplements you have or are taking, start date, stop date and dose.
  • A list of Allergies and what the reactions were.
  • A list of special treatments, date, doctor(s) and the location that treated you.

2.2. Obtaining Records

  • Pathology Reports
  • Operative Consultation
  • Scan Reports
  • Office Visit Reports
  • Scans:
    • MRI - Magnetic Resonance Imaging
    • fMRI - Functional Magnetic Resonance Imaging - blood-oxygen-level and changes in blood flow
    • Ultrasound - Sonogram (Sound / Radio Technology)
    • CT - Cat Scan - Read more about Tumor Growth
    • PET Scan - Positron Emission Tomography Tumor Growth
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