Expert Second Opinions for Neurofibromatosis
Cincinnati Children’s offers neurofibromatosis second opinions for children and young adults.
An expert second opinion from our team can provide clarity, answer important questions and help you understand all available treatment options so you can make the most informed care decision for you or your child’s care.
Our team has extensive experience diagnosing and treating neurofibromatosis. Families choose Cincinnati Children's for a second opinion because of our nationally and internationally recognized neurofibromatosis experts, team-based approach to care, and access to innovative treatments and clinical trials. As a Children’s Tumor Foundation-designated Comprehensive NF Center, we bring together specialists from many areas to evaluate complex cases and develop personalized recommendations.
Our expert pediatric neurofibromatosis specialists offer second opinions for many conditions, including:
- Neurofibromatosis type 1 (NF1)
- Neurofibromatosis type 2-related schwannomatosis
- Schwannomatosis
- Neurofibromatosis-related tumors and complications
What Are the Benefits of Getting a Neurofibromatosis Second Opinion?
Many families seek a second opinion to confirm a diagnosis or treatment plan. Others come to us when symptoms continue despite treatment, a condition has progressed, or they want to explore additional options.
Neurofibromatosis can affect many parts of the body and often requires care from multiple specialists. A second opinion from our team provides access to experts in neurofibromatosis, neurology, genetics, ophthalmology, orthopaedics, neurosurgery and other specialties who work together to review your child’s case.
As a leading pediatric academic medical center, we provide access to advanced diagnostic tools, innovative therapies and clinical research opportunities that may not be available elsewhere. Several of our physicians serve as principal investigators for national neurofibromatosis clinical trials. Whether confirming your current treatment plan or identifying additional options, our goal is to help your family find the best path forward.
How Do I Get a Second Opinion for Neurofibromatosis?
There are several ways you can request a second opinion with one of our Neurofibromatosis Program specialists:
- Fill out our online form. In the “Requesting” field, choose “Requesting a Second Opinion” from the drop-down menu.
- Call us to schedule an appointment. If you call after hours, leave a message and we’ll return your call as soon as possible.
- Ask your primary care doctor for a referral. They can reach out to us to start the second opinion process on your behalf.
What Can I Expect During the Second Opinion Process?
Our referral coordinators will collect information about your child’s diagnosis, symptoms and medical history. We will help gather relevant medical records, including imaging studies, laboratory results, pathology reports, procedure reports and previous treatment information.
Once our specialists have reviewed the records, we will schedule your appointment. If additional testing is needed, we will work to coordinate those services in advance whenever possible.
During your appointment, our team will review your child’s diagnosis, discuss previous evaluations and treatments, and answer your questions. We will explain our recommendations and discuss all appropriate treatment options.
Following the evaluation, we will provide a care plan and discuss where recommended treatment can be received, whether at Cincinnati Children’s, closer to home or through a combination of both.
If your family chooses to receive care at Cincinnati Children’s, the same team will continue to guide and support you throughout treatment. Your clinic nurse and care team will help coordinate follow-up care, answer questions and connect you with additional support services as needed.
Do I Need to Bring Anything With Me?
Our team will work to obtain your child’s medical records before your appointment. However, we recommend bringing any records, imaging studies or test results that you already have on hand.
Please also bring:
- Insurance card(s)
- Current medication list
- Custody paperwork or power of attorney documents (if applicable)
- A list of questions you would like to discuss with the care team
