For anyone; with neurofibromatosis type 2 (NF2), or if you are a doctor with an NF2 patient, this medical listing is to help determine what to look for outside of a primary care physician (PCP) to help manage various issues.
Individuals with NF2 need to see specific specialists for different issues. Finding a treatment location where the NF Clinic Coordinator or Administrator can help plan out MRIs and doctor visits with Interpreters helps. Otherwise, the only doctors an individual with NF2 might see regularly could be a; Neuro-Oncologists, Neuro-Ophthalmologist, and Otolaryngologist (ENT).
It is helpful to manage NF2 symptoms to find a hospital that has NF2 specialists for all the doctors necessary. It helps the team plan treatments better based on all of your issues and will be reviewed by all of your doctors when needed.
Some of the professionals that might help in proper follow-up treatment include:
A treatment center coordinator helps plan medical visits for tests and all specialists necessary for a follow-up. This person might go by a different title in each hospital and is often done by a nurse or doctor.
For regular NF2 Neurological checkups, the proper doctor to see is a Neuro-Oncologist, not a Neurologist. A Neuro-Oncologist understands; 1) tumor development, 2) risks based on tumor locations, and 4) when nerve issues that are seen means tumor treatments might be required.
Many NF2 issues can be identified by a neuro-ophthalmologist. Some NF2 eye issues that can develop in children can result in vision loss, other eye issues can develop later. Eye exams should be done regularly. follow-up for possible NF2 eye issues requires a recent MRI reviewed by a Neuro-Ophthalmologist, but would not be noticed if reviewed by an Ophthalmologist.
An Neuro-Ophthalmologist, ear nose and throat doctor (ENT) is necessary to monitor hearing changes, speech recognition, and methods to aid in hearing. These include devices such as a Cochlear Implant, or Auditory Brainstem Implant (ABI). An ENT should consult with the patient's Neurologist or Neuro-Oncologist.
NF2 is an Autosomal Dominant disorder and what that might mean for diagnosis or an individual and family planning with genetic testing would require help with a Geneticist.
For many NF2 brain surgeries, it is best for two surgeons to be present since the brain is very complex, these should be surgeons who specialize specifically in brain surgery only. For the same reason, a Spine Neurosurgeon should help with tumors along the spinal cord.
Neurosurgeons for treatment for individuals with NF2 should have education in NF2 tumors. A Brain Neurosurgeon, who has done surgery, or radiation/ radiosurgery on individuals with Vestibular Schwannoma (Acoustic Neuroma) for individuals without NF2, does not automatically qualify them as a surgeon capable of treatment for NF2 Vestibular Schwannoma.
Radiation / Radiosurgery should be done by surgeons who understand the long-term effects on NF2 patients. These treatments work on non-NF2 tumor differently.
Audiologists are specialists who understand how a variety of hearing implants work. This includes Cochlear Devices like the Cochlear Implant (CI), or Bone-anchored hearing aid (Baha), as well as the Auditory Brainstem Implant (ABI).
Audiologists in NF2 Treatment Centers should know how to MAP, or tune, ABIs as well as CIs.
An Audiologist should not just be to help inform an individual of the Cochlear Device options and setup after implanted, but should also be a part of at least ABI surgical placement.
A Dermatologist can be consulted for help with a diagnosis of NF2 based on skin irregularities, even if skin irregularities alone would not be the only indication alone of diagnosis unless skin tumor biopsy is included.
Some NF2 skin tumors can be removed easily in a dermatologist's office others might be best done by a surgeon.
Insurance companies do not pay for plastic surgeon use for cosmetic needs but will pay for aid to help in the removal of a painful tumor or help with vision.
NF2 skin surface tumors might be best managed by a plastic surgeon due to skin surface tumors connectivity to nerves.
Plastic surgeons trained in Facial Reanimation including the 'Eye Spring' method for eye closure due to Facial Nerve damage can be consulted.
An Epileptologist is a Neurologist who specializes in the treatment of Seizures and Epilepsy. A Neurologist may be able to diagnose and prescribe medication for Epilepsy, but when the seizures are not controlled with medication an Epileptologists is needed for additional tests to understand an individual's situation better. They are more knowledgeable about different epilepsy treatments.
Some medical follow-up can be done at home by means of different visiting nurse services. These are people who work directly for a hospital or organizations that work with multiple hospitals and organize nurses of different types. These nurses can be an option for individuals who need follow-up after surgery before doctor visits to make certain blood pressure and heart rate are doing well, write reports for doctors about an individual's adjustment following surgery. These services can also include some physical therapy services.
These services can be requested at the hospital before discharge or during a medical visit.
There are different kinds of physical therapists available depending on a person's need. It is important to know that many will travel to a patient's home to provide services such as balance recovery.
Some medical follow-up can be done at home by means of different visiting nurse services. These are people who work directly for a hospital or organizations that work with multiple hospitals and organize nurses of different types. These nurses can be an option for individuals who need follow-up after surgery but before doctor visits to make certain blood pressure and heart rate are doing well add to here write reports for doctors about an individual's adjustment following surgery. These services can also include some physical therapy services.
A Primary Care doctor is necessary for regular physicals and blood work to be sure an individual is in overall good health despite having Nf2. Blood work can also help to determine what medications an individual should take.
The more doctors know about NF2, the faster individuals with NF2 can be helped.
The job of a Radiology technician for scans to review tumor change is a difficult one. Their job is to make sure the MRI machine takes as many scans as possible specifically noting irregularities in the time span a machine has to do a scan. Note in lesion changes is the job of the radiology technician, not the identification of the lesion types, even if types are notes on reports. Lesion types are noted for the best use of identification between irregularities for reports. In some cases, even a Neurologist or other doctor type might not be able to identify masses seen in MRIs due to MRI clarity others might require a biopsy.