Modern Psychosurgery

The following is an email exchange, reproduced with permission, between myself and a worried parent who recently wrote to me:

—– Original Message —–

From: motty beckham

Date: Wednesday, October 22, 2003 10:03 pm

Subject: about psychosurgery

Dear Christine,

I agree completely, we should never forget the days when doctors did lobotomies, cutting or destroying tissue without carefully choosing the correct target. But it is different now, with new neuroimaging and targeting technology it is much safer. My daughter who is 30 years old had a bilateral amygdalotomy in 2000. She had severe aggressive and self abusive behavior. Without it she would most likely be dead by now, or institutionalized. She would cry all the time, hit and scratch other people, beat her head and scratch her face and dig her fingernails into her arms and legs. Her aggressive and self abusive behavior has decreased by 90% and she smiles a lot and stays in a good mood and interacts with her family. And before she had any surgery, her neurosurgeon explained what the goods results could be, what complications there might be, I was fully informed. when I thought about without surgery, how if something happened to me and she wound up somewhere restrained and sedated maybe aspirating on her own vomit because she couldnt help herself, it wasnt a hard choice, and I wouldnt go back and undo it if I could. So, no we cant ever forget, but give a fair view of both sides. Yes there can be complications, but if psychiatric neurosurgery is successful, you can often have a better life without drugs and the awful side effects they have. And there might be someone out there whos loved one problems have not been solved by medication or behavior therapy, and feel there is no where else to turn, might have one more option, and they might not feel things are hopeless as I once did.

Sincerely, Motty Beckham

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Hi Motty-

First off let me tell you how nice it is to hear from someone with a good outcome. I’m very, very glad for you. I usually hear very sad stories.

We are probably closer on this topic than you might think. My main complaint about the treatment of mentally ill people is that our society does not care for them properly. Let me elaborate.

When I heard that the President request 87 billion dollars to rebuild Iraq, I was livid. No administration, Republican or Democrat, would ever dream of spending that kind of money here at home. Can you imagine what it would be like if we spent $1 billion per year on mental health care? There would be money for research, for group homes, for improved care, for higher salaries to attract the best caregivers, etc. In this fantasy of ‘what could be’, you and your daughter would have had many, many options on how to get help.

What if, when you were looking for help for her, there had been a really great group home for her that was nice, safe, and staffed by well-paid, devoted people … a place you felt really good about? Would you have chosen to take the chance on the surgery first?

I feel that usually people don’t have many choices and that’s the part that keeps me up at night. They are forced to make hard decisions and take big chances that maybe they wouldn’t have to take if there were more options available.

Please, do not take this as a criticism. I understand very well that in the real world our options are few and help is not easy to get. You and your daughter did what you felt was right and, thank God, it has worked out well so far. But I think that our society tends to disregard the mentally ill until they do something terrible. I’m tired of hearing people complain about the homeless mentally ill when we offer them few decent alternatives. Their choices are to be locked up in a hellhole or live on the street. I know what I’d pick.

So, that’s my problem with all this. No choices, no funding, and no compassion lead to no hope and desperate decisions. We owe more to these vulnerable people who need our care, and to their families struggling to deal with their ill loved ones.

Please wrote back if you want to talk about this more. I think it’s important that people like you and me stay in touch. I strongly believe in intellectual honesty and ethics in all things. Maybe, if you want to at some point, you and I could work on some sort of article … an open discussion comparing and contrasting the past with the present, and what really needs to be done to help people in your position.

Best wishes,

Christine

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Dear Christine,

Thank you for your kind email. I agree with all points made in your letter. I have been my daughters caregiver for the last 20 years at home because she was not well taken care of in the institution where she spent two years. I think about all the people like me who at 51 years old are getting weaker, and think about people in their 70’s and eighties still trying to take care of their 50, 60 and 70 year old children. And I hear the stories where people, especially the elderly who kill their children, because they dont want to leave them behind, to suffer as you say a living hell, till they themselves die from, too often inadequate medical treatment and neglect. Yes, I would very much like to stay in touch with you and perhaps help write an article in the near future. Please email me with any thoughts or questions you might have.

Sincerely,

Motty Beckham

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Dear Christine,

Thank you for allowing me to voice my feelings and opinions. I would like to say that in the conversations I have had with my daughter’s neurosurgeon and other neurosurgeons I have talked to, they are well aware of the shadow that the lobotomies of the past has cast on them. And they want to make sure that never happens again. They are now working on procedures that use “deep brain stimulation” to create reversible lesions using implantable electrodes, similar to what is used now for parkinsons disease. At present they are using deep brain stimulation for obsessive compulsive disorder, and in the very near future may be using it for tourettes syndrome, eating disorders, epilepsy, and other movement disorders.

So in the future, if a procedure is done, if the procedure is not a success, they will be able to take the electrodes out, and you would return to the presurgery state, and you could research what went wrong and redo it. And of course, even with deep brain stimulation, there is a slight chance of complications, or temporary side effects, as is with all brain surgery.

Sincerely,

Motty Beckham

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I appreciate Motty’s opinion, and the terrible choices that mentally ill people and their families face. For a while I tried to run a website called mentalhealthoptions.com, with the idea that I could create a referral service to assist people in finding professionals that could help them. I quickly made a dreadful discovery … there is very little help out there. What help is available is often very costly and out-of-reach for the average family.

I believe this is the case for several reasons. First, it is very risky to run a psychiatric program, group home, or assisted living center because of lawsuits and prohibitively expensive malpractice insurance. Second, the general health care crisis that has left so many Americans without decent insurance coverage that would pay for long term care. Third, there is little real interest in our society in caring for these people.

The lack of decent, affordable facilities has, in my opinion, led us back to the same place we were in the 1950s … looking for great and desperate cures (to borrow a phrase from Dr. Elliot Valenstein).

I deeply disagree with Motty about the safety of modern psychosurgery, but I feel it’s important to allow room for all opinions. (UPDATE 1/6/04 I have since learned that Motty’s daughter has had four different brain operations to treat mental illness which I personally find very shocking) it is not the intention of this site to impose our opinions on others, but to have a rational, though often critical, discussion about the entire concept of operating on the brain in an attempt to treat mental illness.

-Christine

Christine@psychosurgery.org