Approach Brain Surgery with Care

Being told I had a brain tumor was the scariest thing that ever happened to me in my life. The first doctor I saw advised brain surgery. The second was opposed, strongly opposed. And I was totally confused. And I kept asking -- what will be the impact of removing a tumor in the right front alone? Will it affect my feelings? My ability to relate to others? I was told there would be no impact, maybe a bit of impact on my personality and anger, and I never really got clear answers.

Then I went to a brain tumor conference and heard a neuropsychologist speak. She went through possible impacts of damage to various parts of the brain. Radiotherapy can cause this damage. I also learned that surgery can as well, even if there are no complications. She pointed out that not all changes may happen as a result of damage.

• Frontal Lobe Damage Personality Changes:
• Childlike or immature behavior
• Socially inappropriate behavior, such as saying things that are true but that people normally keep to themselves
• Impulsivity
• Problems with judgment, such as around money management and in dealing with other people, etc.
• Lack of sensitivity to others feelings, i.e. empathy
• Disinhibition
• Flat affect
• Can learn and store information; hard to retrieve
  
• Frontal Lobe Damage Cognitive Problems:
• Reduced attention and concentration
• Problems planning and organizingeasily distracted
  Trouble getting the main idea
• (left brain) Naming or word finding difficulties
• Can do concrete thinking but not more abstract, see concrete meetings only
• Reduced mental flexibility
• Lack of awareness of deficits: forget that you don't know how to do things above. It then takes a second person to remind or to do this things for you. In the more extreme versions, it is possible that the person has lost the ability to learn.
• (Right brain) Awareness of change is reduced [I think I got this right]
• are you Chemotherapy can cause subtle cognitive problems

I spent two days wrapped in emotions of terror upon learning this. Both at work and my personal life I use high-level cognitive skills, communication skills, empathy, ability to form heart connections, my judgment. I have a goal of becoming a Nonviolent Communication (Www.CNvC.org) Trainer -- this would not be possible if I lost these abilities. I would lose the core who I am.

Out of this terror I came up with my goals for living with what I thought was a brain tumor. For as long as possible I want to:

1. Maintain my current high-level "personality," i.e., ability to navigate political situations, excellent communication skills, empathy, and ability for continued personal growth.
2. Maintain my current high-level cognitive skills.

I then made an appointment with a neurooncologist I had heard speak at the conference. When the day came for my appointment I was super scared. The doctor looked over all my previous records and previous MRI scans and gave me her recommendation -- to meet your goals given your medical condition do not have surgery. Surgery, even if there are no complications, can result in losing personality/cognitive skills.

Furthermore, the doctor was not sure I had a tumor. A tumor has clear edges -- mine does not. If it were taken out normal brain tissue would have to be taken out around it, increasing the chances of surgery side effects. It's highly possible that the lesion is something I was born with, or... I forget the other possibilities.

As soon as the doctor left the room I knew I had made my decision. I'm not going to have surgery. I'm not going to live my life in fear of a brain tumor. Oh get my periodic scans every 4-6 months, take care of myself because I want to anyway, and IT'S OVER.

Your story may turn out different. Because of the medical facts surgery may be the best choice for you. I encourage you, based on my experience, not to take a single doctor's opinion to have surgery.

Take your time. Even if you are in the emergency room will find out if surgery is essential right then. If not, take the time to visit at least two neurooncologists and two surgeons from different institutions. Even if you have to travel. I have been amazed at the difference in focus and recommendations.

If you have a grade III or grade IV tumor, surgery is your best hope if the tumor can be removed.