A difficult choice

Graham Jones

1/27/2012 3:07:21 PM

My wife of nearly 40 years is bi-polar and has made 3 suicide attempts since I have known her, two very serious including one resulting in her heart stopping for 4 minutes. The ER doctor said it was a miracle that they managed to revive her and that she didn't suffer any serious brain damage [determined via subsequent cognitive testing]. She has been hospitalized more times than I can remember. In other words her illness is chronic and based upon recent medical evidence every major episode itself causes permanent brain damage.

After we were married I discovered that she had had ECT for depression [wrongly daignosed like so many people when she was really BP]. I had no idea what all of it meant until she became ill after 13 years of good marriage at which point she was correctly diagnosed. In the following years she became ill several times each time taking longer to recover, often 9 - 12 months. With a young family this made for a very difficult life. ECT was a regular part of her treatment and I must say that seeing her immediately after a treatment in those days [20 - 25 years ago] was not pleasant - "the lights were on but nobody was home". On one occasion a close family friend stepped in and got the treatments stopped. I am sure that she meant well but that should not have been possible without family approval!

Fast forward to last few years - my wife's illness is still chronic and with ever shortening periods between minor or major episodes. Over the years she has tried just about every antidepressant known without any clear success. About 3 years ago her problems became worse when, unusually for her, very clear periods of mania suddenly appeared, up until then hypo-mania was the usual high, although she has "played away from home" a couple of times if you get my drift. Such things are not uncommon with BP but very hurtful of course. Trying to rationalize it with the illness and forgive is not easy. I am sure that in many cases forgiveness doesn't happen and marriages break down.

Being married to a BP person is definitely not for the faint of heart. We had the good fortune to be able to get her into one of the best local psych units which does regular ECT treatment. When it was suggested we were both horrified but after some discussion and viewing a video of how different it is today we agreed. Does it have memory side effects - yes! Are they permanent or temporary - nobody can tell you for sure. Does it work - yes! So pick one - possible death from suicide for the more difficult cases or a perhaps somewhat diminished life.

Every day I see the psychological affect the memory issue has on my wife [it is very selective - she often remembers things that I can't] but she is still around and for all of the challenges over the years I will take that choice over the alternative!!! BP disorder and other psych illnesses [we have a son with schizophrenia who has a poor quality of life - no doubt genetics at work] can be chronic. The choices about treatment are rarely simple or without consequence [eg. unhealthy weight gain from atypical anti-psychotics - both my wife and son take them]. What are we to do? Let these people suffer the consequences of the illness until we have better answers or use the current tools, as flawed as they are, to provide even some temporary relief to give that much needed hope to get through the next day, and the one after that.

 For clarity my insight isn't just from many years of obsevation of my wife but my own challenges with anxiety and depression starting in my early 20's. Fortunately it is under reasonable control right now but I know only too well what getting from one day to the next is like and how clinical depression affects your entire personal and professional existance. Those people who think that we are "slackers" should spend just ONE single day in that totally miserable condition. Those thoughts were a huge influence on my choice to support my wife having ECT. How could I in all good conscience leave her in purgatory!

ECT: the good , the bad, and the ugly

Phyllis G Potter, LCSW

1/19/2012 8:58:12 AM

I applaud Dr. Rosenberg for a beautifully written article about his journey to the depths, and for "coming out of the closet" about being a mental health professional who has a mental illness. That should not be such an unusual and brave thing to do but unfortunately, given the state of mental health care in this country, it still is.

I am very glad for him that he had such a positive experience with ECT, but I do wonder where the figure of 85% positive outcome for ECT comes from? Even if that were a proven figure- which from my research I don't believe it is- that still leaves 15% who presumably have no benefit or who have been harmed. There is a notorious lack of hard research, and especially of neuropsychological testing and follow-up regard the permanent side effects of ECT.

I had 14 ECT treatments,unilateral and then bilateral, until a friend intervened to get the doctor to stop. Nowhere on the release form that I signed was there mention of possible permanent neurological damage. I would never had taken such a chance. In addition to memory loss, I've spent the subsequent 2 years feeling that there was something wrong and different about my brain. I've been awash with psychotherapeutic drugs and therapy to treat my anxiety and depression which were thought to be causing my disabilities.

A few months ago, I finally had a neuropsych workup. The diagnosis is mild cognitive impairment, dysexecutive type (frontal lobe damage)probably due to ECT treatments. I am in a life skills class for people with brain injuries. Please, if you are reading this, be so careful about signing on for this treatment. If you are feeling badly enough to be considering it, you are not capable of making this decision by yourself. Involve your friends and family. Do careful research. If you go on-line, you will find that physicians in other countries are much more skeptical about the safety of ECT. Get a second opinion. Consider other options such as hospitalization followed by a day treatment program.

Most ECT treatments cause harm

Philip Bennett

1/18/2012 3:14:49 PM

depression, major

john McClure

1/18/2012 2:37:31 PM

Bi-Polar ll, ECT Treatment

Janna Brethe

10/8/2010 3:44:17 PM

I read this eloquent article and wanted to weep. It is 2010 and I am still suffering from the aftermath of a 2006 hospitalization and ECT treatment. Once an extremely creative individual in the arts with a deep reservoir of memory, rich life experience, multi-lingual skills and a voracious love of reading which included retaining what I read, I have lost the skills and memories that were the foundation of my identity; the very skills that carried me through incapacitating and incomprehensibly depressed moods, that led me to the edge of suicide twice.

My memory has been grievously hurt. I suffer from Aphasia, loss of event memory from both immediate past and from approximately the age of 27. (I am now 48) I have lost the ability to recognize faces, (at the very least it takes the fun out of watching those complex films I used to enjoy ) extreme difficulty learning new tasks and remembering them a week later unless they are done repeatedly everyday, difficulty remembering the pre-ECT tasks I had learned that were not so cemented. I have conflicts with my partner when I swear that I never did or said things that I am told I did (and then shown proof amidst my tears and frustration) or deny the possibility that my partner did things he says he did or did not.

 In fact I have few memories of meeting my partner of 4 years and have lost the rich memory of the events that led to this current love. "We did that? That's really nice! You did that? No wonder I let you stick around." Once a vibrant witty conversationalist, I can no longer engage in the dialogue with friends that I used to enjoy as I stumble to complete a joke or wordplay and fade out when I cannot grasp what I know my mind is trying to say. It feels my partner is now experiencing caring burnout and has become a little edgy and impatient as I try to explain in rational language day to day events and cannot; which of course creates a snowball effect.

I am in rehab now for this injury. I am told there is no going back. Doctors would consider my case a success as I have not had any deep, debilitating events since. I have also lost my ability to feel the true warmth of pleasure and love which I can "remember" as a vague flame of the past, but from which I seem now to irretrievably separated.

Could it be, as you said that incorrect performance of this procedure caused this injury? Could it be that as a Medicaid patient I was treated with a little less focus and regard than you, Dr. Rosenberg? No one thought to test my memory along the way, at least not that I remember. Who can identify what they have forgotten until it pops up in questions....What trip? He died? They stayed at my house for 2 weeks?

Vulnerable patients must be protected. I am glad that ECT worked for you, but I think it is important to emphasize that injuries really, really do occur. I think it is important to provide pre-ECT patients with all other manner of treatment before they are put through this, including, a safer, more quiet and nurturing hospital experience. While at the hospital (which is considered a first-rate NYC facility) I am told fires were set in beds on my floor. I do recall having been stripped searched as everyone on the floor was while all being kept in lockdown in the sweaty smelly cafeteria on our floor, all day. The noise was deafening as patients on the floor shrieked and jack hammers tore through the building during construction.

 I have extreme sensitivity to sound, which has been the case since childhood and continues to this day. My doctors knew about this. How could I have even made ANY type of recovery in a unit where I am told I refused to move as the flames leapt across the hall, ready as I was to remove myself from another form of hell-this "Healing" facility. In retrospect I should have asked to be released (think Stanford Prison Experiment) or moved to a different facility. Do I need to pose the rhetorical, "Why wasn't I thinking rationally at the time??" My partner says they threatened a court order to keep me in and that I would have to be in for a long time, if not for ECT.

I am med resistant and have toxic responses. I guess that makes me atypical and extremely sensitive! Did anyone stop and think that I may store information in a more complex manner than others given my profile? What about visits to an endocrinologist to see if there was some imbalance causing this whole thing? What about short term treatments with E derivatives that provide quick relief in a controlled setting or acupuncture or Chinese herbs covered by insurance so the less financially endowed can give them a try? A try? Before taking my brain? If you were me, you would have lost your job a long time ago and worried about how to get WholeFoods to see past your fumbling. Is this trade off of the sorrow for the joy necessary? Please urge doctors to find other options to this invasive and life changing procedure.

No one understands how the brain works yet, so each individual brain should be approached with awe and care. It seems that some brains continue to be worth quite a bit more than others. But my complex and exquisite brain has meant the world to me and I would have told you this before the ECT in the deepest hell of depression.