Craniopharyngioma Symptoms

Craniopharyngioma can most easily be detected with a brain MRI or CT scan if it is causing symptoms.

If you suspect yourself or a loved one to have this, your primary care doctor, or any other doctor you have met with about the related symptoms, could be asked to order a brain MRI or CT scan.

Find a Doctor Here (Enter the city you would prefer to have care in, and look for a primary care provider, neurologist, neurosurgeon, or neurooncologist. If you are experiencing vision symptoms, visit your eye doctor or search for ‘eye & vision services’ on the link)

If you are working and need time off for surgery/treatment, there are a few things to keep in mind:

• Get a note from your doctor stating the time you need off and communicate with your employer / human resources (HR) department

• Use your paid sick time and other paid time off.

• Check if you are covered by FMLA (Family and Medical Leave Act) which protects your job while you are on medical leave or short-term disability.

• If you are NOT covered by FMLA, ask your HR for unpaid extended medical leave as a reasonable accommodation through the American Disability Act (ADA).

• If you are enrolled in a short-term disability insurance policy, file a claim if you need to utilize it.

Review your employee handbook and see if they have things like donated paid time off or other medical leave programs.

• FMLA Info

• ADA Info (Reasonable Accommodation)

Going Back to Work After Surgery

If you or your loved one can’t go back to work due to the impacts of the tumor or surgery, this is where durable power of attorney comes in to help you get long-term disability and/or Social Security Disability Insurance.

Social Security Disability Insurance

Long-Term Disability could be claimed if you have elected a policy for Long-Term Disability Insurance. Check your insurance elections or ask your HR department to see if you have this if needed.

No one wants to think of something going wrong, and we pray that nothing will go wrong in your treatment. However, the only thing worse than something going wrong is something going wrong and not being prepared for it. Here are links with instructions on how to set up the most important items to have in place in the event of the worst case scenario.

• Durable Power of Attorney is a legal document that allows you to name a trusted person to make legal and medical decisions on your behalf in the event of your incapacitation. Here’s how to go about getting this set up before your treatment.

• A Living Will is a statement that you write about how you would like to be cared for if you are incapacitated. This can include things like ‘do not resuscitate’ orders, wanting or not wanting breathing machines, feeding tubes, or other specific items. Here’s more info on creating a Living Will. You will need it notarized, but most public libraries offer no or low-cost notary services (call them to check and see what you need). You will want to make sure your Durable Power of Attorney has access to this info.

Here is a longer list from the NIA on future affairs planning

Outside of an Advance Care Directive and Employment Considerations, and in the likelihood of a patient having a successful treatment but just needing time to recover, here are a few other items you may want to set up plans for:

• How you will pay all your bills post treatment (Auto-Pay, a loved one, etc)

• Where you will stay after treatment and who will take care of you

• Obtaining doctors notes and treatment plan

• Making sure your spouse, caregiver, and/or person listed in your power of attorney documents has the rights to communicate with your doctor and view medical info. (Work with your healthcare professional to set this up)

Because this tumor often impacts the patients hormones, it can be wise to visit an endocrinologist before and after treatment to see the impacts that the tumor may have had on hormones. Hormones can have a significant impact on overall health of a person, especially female patients.

Study on Hormones & Craniopharyngioma

Finding an Endocrinologist (Enter you preferred city of care and look up endocrinology)

Treatment Options

Find a Healthcare Provider (Enter your preferred city of care, and search for a neurologist, neurosurgeon, or neurooncologist)

Brain Surgery Recovery

When you get home, you need to rest, eat good food, and get tons of sleep. Take it easy and listen to your doctors orders for a successful recovery. Make sure you have a loved one who can help you while you recover.

If you have health insurance and/or a health savings account, utilize those as appropriate.

If you do not have health insurance or need supplementation, consider signing up for Medicaid, checking if you can get special enrollment on healthcare.gov, working with your healthcare provider on reducing the cost / setting up a repayment plan, or getting involved with a healthcare cost sharing organization like Crowd Health.

A Story of a Child with Craniopharyngioma

It is more important that parents are observant of potential symptoms in children:

• Squinting or vision issues

• Height not keeping up with peers

• Abnormal weight gain

• Excessive thirst

• Clumsiness

• Nausea and vomiting

• Excessive sleepiness

If you suspect your child has this, find a doctor that can order a brain MRI or CT scan (Types of doctors that can do this include: primary care providers, neurologist, neurosurgeon, neurooncologist, endocrinologist, or eye and vision services.)

Find a Doctor (Search your preferred city of care and one of the above specialists)

Proton Therapy at St. Jude Children’s Hospital

Keep in mind, a perspective from endocrinology can be far more critical in children that have not been through or are currently going through puberty.