Life After a Benign Brain Tumor

Going Home

After brain surgery, as with any type of surgery, it will take time to recover.  Recovery is different for everyone and depends on: 

  • The location of the tumor within the brain 
  • Areas of the brain affected by the surgery 
  • The patient’s age and overall health 

At the time of discharge from the hospital, the patient and his/her caregivers will be provided with detailed written and verbal instructions about the transition to care at home. The instructions include care of their incision, prescriptions for medications, appointment for a post-operative examination with the surgeon and telephone numbers for any questions or concerns that may emerge after discharge. 

Most patients are discharged to home and in some cases may require additional care. Brain tumors as well as surgery for brain tumors can occasionally result in problems with thoughts, behavior and physical abilities. OT (occupational therapy), PT (physical therapy), speech therapists, VNA (visiting nurses) are available to assist them in transitioning to healing after discharge. 

Occasionally some patients may require additional care that is unable to be accomplished at home. If this is necessary the patient can be admitted to an in-patient rehabilitation facility for a short time to insure their safe and effective recuperation.  

Rehabilitation Therapies include: 

  • Physical therapists will assess and, if necessary, help the patient to improve their ability to walk safely and climb stairs before being released from the hospital. They may also help the patient improve strength and balance. 
  • Occupational therapists will assess the patient’s ability to perform more detailed activities involved in "real life" such as getting dressed, using the bathroom and daily personal hygiene.  
  • Speech language pathologists will assess and, if necessary, help improve problems with speech, language or thinking. They are also able to assess patients who may have problems with swallowing. 
While care delivered by physical therapists, occupational therapists, speech pathologist and nurses are available in all in-patient rehabilitation facilities they can also be arranged for home visits as well.   

All inpatient units at YNHH have a care coordinator who will assist the patient and their caregivers with OT, PT, VNA, rehabilitation or any other special needs the patient may require for their recovery. 

Being at home: 

Driving 

  • Driving after surgery is dependent on the extent of the surgery and the patient’s recovery; additionally, having seizures may limit driving for a time. Usually post-op visits are approximately 2 weeks after surgery and clearance to drive is evaluated at that time. Laws for driving after seizure(s) vary according to states. The laws for each state can be found on https://www.epilpsy.com/driving.laws. The guidelines for Connecticut require input from a treating physician and can be found on https://www.ct.gov
  • Driving during surveillance only treatment and radiation, also depends on the presence of seizures, otherwise driving is not restricted. 

Traveling 

  • Traveling after surgery depends on the extent of the surgery, the patient's recovery and planned treatment. It is also dependent upon the destination. Traveling after surgery and during surveillance and radiation should be discussed with the healthcare practitioner on an individual basis. 

Working 

  • Working after surgery depends on the extent of the surgery, the patient’s recovery and the type of activity involved in the job. Generally returning to work in 6 to 8 weeks is reasonable. Certainly the ultimate decision will be decided upon individually between the health care practitioner and the patient. 
  • Patient’s or family member’s places of employment will occasionally ask for the employee to file for FMLA, or family medical leave of absence paperwork. These forms require the participation of a treating physician and we are happy to comply. During the period of time that the patient is unable to work, he or she can still collect a salary through short term or long term disability coverage. Generally, short term disability benefits expire after three-to-six months and then long term disability insurance may take over. The plans for coverage may vary, but in general, an employee may receive 60% of his or her monthly salary after a certain waiting period, and the maximum monthly benefit is capped. It is important for the employee to review their short term or long term disability policies with their human resources manager to review the terms of coverage and to know that they are in compliance with the policy. 
  • Working during surveillance can certainly be managed by scheduling appointments around work hours. 
  • Working during radiation can be arranged to fit in to the patients work schedule. Stereotactic radiation is a single treatment and fractionated radiation takes only minutes each day. If a patient lives a long distance from the hospital the possibility of having daily radiation at a local facility may be an option.   

Eating and Drinking (Nutrition) 

  •  Prior to surgery patient will have been instructed to stop eating and drinking after midnight the evening before. After surgery the patient's diet will be progressed slowly as the patient tolerates, beginning as soon as the day of surgery. Due to general anesthesia and pain medications affecting the digestive system the patient may experience bowel changes. The most common is constipation which will be treated with medication. 
  • Digestive issues related to radiation therapy are not common, though keeping in mind the differences of each patient, any discomfort can be treated.  

Activity/Exercise/Sports 

  • Activity after surgery depends on the extent of the surgery, the patients recovery and the type of activities in question. Patients are typically assisted with getting out of bed on the first or second post-operative day. Moving around is encouraged, should start slowly and progress as the patient is able. The ultimate decision regarding extreme sports/activities will be decided upon individually between the health care practitioner and the patient. 
  • Activity/exercise/sports during surveillance and radiation are not limited. 

Medications 

  • Regular medications such as vitamins, and many other prescription medications will be continued while the patient is in the hospital and can be continued upon discharge after surgery. 
  • Regular medications are not disrupted during surveillance and radiation. 
  • Medications specific to the brain tumor and/or surgery such as steroids, anti-seizure medications, medications for dizziness, pain and nausea/vomiting will be adjusted by the health care practitioner after surgery according to the patient's individual needs. 
  • Steroids, anti-seizure medications, medications for dizziness, pain and nausea/vomiting are not disrupted during surveillance, radiation. 

Sexual Activity 

  • Sex before and after surgery is only limited by the patient’s ability and desire. Sex during surveillance and radiation is not discouraged. 

Pregnancy 

  • Pregnancy prior to surgery and during radiation is not advised due to the risks of anesthesia, certain medications and radiation on the unborn embryo/fetus. The timing of pregnancy after surgery and radiation, and during surveillance should be decided upon individually between the health care practitioner and the patient. 

Pregnancy Prevention 

  • Pregnancy prevention methods that require hormone administration may have an effect on certain types of tumors and their use in general should be discussed with the healthcare practitioner; any barrier method of contraception is acceptable at any time and with any type of treatment. 
Subsequent treatment 
  • You've been diagnosed with a brain tumor and it is determined to be benign... now what? Your treatment will be determined by the type of tumor, it's location, symptoms, your general health, among other things, and your follow up will depend on the type of treatment decided. 

Surveillance 

  • It is often possible to postpone treatment and watch a benign brain tumor closely. This is called surveillance, observation or watching. Surveillance may be an option if a tumor is believed to be benign, small, growing slowly, and is not causing symptoms. 
  • Surveillance alone may also be recommended for people who are older and/or those who have other serious medical problems making other interventions, such as surgery, too risky. 
  • Surveillance or monitoring can be in the form of an MRI or CT scan to observe the brain and any changes involving possible tumor growth that may, or may not, occur over time. The time intervals for surveillance imaging will be decided upon by your doctor based on the type of tumor you have and your treatment so far. An example would be: having imaging done three to six months after the first brain scan, then once per year. If the tumor remains stable the interval time may increase. In addition, if the tumor remains unchanged surveillance alone may be all that is required yet if the tumor begins to grow or cause symptoms, treatment may be recommended. 

Radiation Therapy

Emotional 

  • A brain tumor diagnosis can be frightening and confusing physically and emotionally, as well as financially. The confusion of a new diagnosis is overwhelming yet it is very important to gather all the information you can, organize it in your mind, and therefore be better able to effectively communicate with your caregivers. 
  • Knowing your potential plan of care allows you to organize your life, your thoughts and your means of support appropriately. It also helps to identify which questions to ask your caregivers. Your caregivers are your greatest source of support on every level and knowing that you can utilize them while feeling comfortable doing so is incredibly valuable. 
  • In addition to your direct care team (doctors, nurses, therapists) who are well equipped to meet many of your physical needs, YNHH has a Social Work Department. Your social worker will meet with you, upon request, to assist you in understanding your body and mind’s reaction to your diagnosis. He or she can help you identify areas in which you might need assistance and provide connections for the best type of support for you. 

Financial 

  • While our social workers are able to provide you with referrals for financial support YNHH also has a number of financial assistance programs. 
  • https://www.ynhh.org/patients-visitors/billing-insurance/financial-assistance.aspx 
  • Financial Assistance Programs 
    • Yale New Haven Health understands that it can be difficult for some patients to afford paying their hospital bills. That is why we have a variety of financial assistance programs designed to help. Patients are required to complete a financial assistance application and provide requested documents to verify financial need. 
    • To learn more, obtain a free copy of our Financial Assistance Policy and application, or for help completing an application contact Patient Financial and Admitting Services or go to www.ynhhs.org/billpay or visit us in our Admitting offices at: Yale-New Haven Hospital 20 York Street, New Haven, CT; Bridgeport Hospital 267 Grant Street, Bridgeport, CT; or Greenwich Hospital, 5 Perryridge Road, Greenwich, CT. 

Free Care Program 

  • You may be eligible for free care if your family earns less than 2½ times the Federal Poverty Level, you apply for State Assistance (Medicaid) and receive a valid written decision from the State; and you complete a Yale New Haven Health financial assistance application. 

Discounted Care 

  • You may be eligible for discounted care if you do not have any type of health insurance and you complete a Yale New Haven Health financial assistance application. 
  • These programs cover medically necessary care and cover ONLY Yale-New Haven Hospital, Bridgeport Hospital & Greenwich Hospital bills. Patients eligible for financial assistance will not be charged more than the amount generally billed to patients with insurance for emergency or other medically necessary care. Yale New Haven Health will respond to each application in writing. If your application is rejected, you can re-apply at any time. Additional free bed funds become available every year. 
Financial Counseling 
  • Additional programs are available to help patients and families in need of financial assistance. We can often help you find out if you qualify for federal or state funds to cover your hospital costs. Our agency coordinators are also available to help patients apply for Medicaid benefits. Call to speak with or schedule a free, private and confidential appointment with one of our patient account representatives.