[most recent posts first]
Neurosurgery for mental disorder (NMD) About page on MIND website (15 February 2016)
Published May 2015, revised 2018.
The NMD operation
NMD side effects
Consent to NMD
Access to NMD
Deep brain stimulation (DBS) & vagus nerve stimulation (VNS)
the problems defining treatment resistance & other depression stats: @dchristmas 2.1.1-6 Dec06 (7 February 2016)
2.1.1-6: Major depressive disorder (MDD); pages 5-17
The Economic Burden. The Natural Course. Defining Treatment-Refractory/Chronic. The Validity of Staging Methods. Defining Outcomes. Treating MDD Effectively.
It's been 8 months since my last blog post about Dr Christmas's NMD thesis but today I grasped the nettle and got down to looking through the Background section on major depression. Capturing some quotes in screenshots that stood out for me, among the stats and charts.
|disability comparisons with diabetes, arthritis etc|
|(I've been resistant to psychiatric treatment for over 4 decades ...)|
|professions suspicious about NMD writings|
|significant gaps in knowledge re effective management|
despair roamed the slaughterhouse: @dchristmas thesis background; you abandoned me, love don't live here anymore (16 June 2015)
After a 3 month hiatus, busy with other writing and co-collaborations, I've returned to study Dr Christmas's MD thesis. Page 5, section 2, Background. [Although I nearly got diverted again by language used in the Abstract Conclusions: the use of "appear to be" and "may" as if it's mostly conjecture and possibilities]
The quote at the start by Anne Sexton is interesting:
as if the sea dried up
as if the sun became a latrine.
God went out of my fingers.
They became stone.
My body became a side of mutton
and despair roamed the slaughterhouse."
Anne Sexton (1928 –1974)
"The Sickness Unto Death‟
I hadn't heard of this American poet before. Some have compared her with Sylvia Plath. Unfavourably: "The occasional poem is too blatantly derivative of Plath's work, aping both her tone and metaphorical mode" The Times Literary Supplement (from enotes)
"Sexton suffered from post-partum depression, and after the birth of her first daughter she suffered her first breakdown and was admitted to a neuropsychiatric hospital. Other institutionalizations followed. Sexton struggled with depression for the remainder of her life. She committed suicide at age 46." Poetry Foundation
Like Sexton I experienced postnatal mental health issues, a psychosis or altered mind state due to the pain of labour. Forced childbirth brought on by chemicals in a drip through induction. I was clinically depressed when on antipsychotics and the depression only lifted when I tapered the drugs, myself, and got off them all. After psychotic episodes in 1978, 1984 (postnatal) and 2002 (menopausal).
I found it very difficult to function on antipsychotics. They lowered my mood, took away the joy in life, the hope. I remember describing it like being in a tunnel with no light at the end of it. In 1978 after the birth of my second son, when he was about 13wks old, I had a breakdown, aged 25 (about the same age as Anne Sexton, having married at 19 like her).
We were living on my in-laws' farm. There were various stressors, not least the fact that my mother-in-law was mentally unwell herself, had a manic depressive illness, due to losing babies. It couldn't have been easy for her having me in the house with a new baby. Not easy for either of us. And so I went a bit mad. Not sleeping. Altered reality. Psychiatrists came to the house and said my condition was due to "hormone imbalance". I wondered why they couldn't give me some hormones to sort out the balance.
Instead I was persuaded to go voluntarily into Hartwoodhill psychiatric hospital. I wouldn't swallow the pills so was held down and injected with Chlorpromazine. Despite being a "voluntary" patient. I have always known that voluntary means something else in a psychiatric setting. On the 3 occasions I entered psychiatric wards as a patient I did so voluntarily. And was forced.
Despair roamed the slaughterhouse. You abandoned me, love don't live here anymore. The song that was playing on the radio in the ward when I was a mental patient in 1978:
I managed to avoid ECT during that first psychiatric inpatient stay in 1978 because I knew what it was, my mother having had many courses of it, against her will in Murray Royal Hospital, Perth, during the 1950's and 1960's. A treatment for psychoses, back then. I ran out of the hospital in my pyjamas, with my husband, to escape it. Had to come back in again because of drug withdrawal side effects. Muscle spasms in my neck. Very alarming to my relatives on the farm.
That winter of discontent, 1978/9, was a cold one. The water froze in the pipes on the farm. We got water delivered in a tank. Life was grey, hard. My oldest son had turned 2 in the October, my baby 4 months old, and I was a mental patient. Had to stop breast-feeding because of the drugs, was bound up to stop the milk, and I resented it. A year on the drugs and no more, was the hope that kept me going. I kept it to myself, the thought, didn't tell the psychiatrist. I let him think that I was compliant.
I remember going sledging in the snow on the farm, with my sister-in-law and our bairns. Some light relief. There was always someone around to be with although I was sequestered on the farm, no car, wasn't driving. When Spring arrived I began to wake up and see a chink of light at the end of the tunnel. The Chlorpromazine had been reduced by the psychiatrist to 4x25mgs. From 4x100mgs when in the hospital. I was about ready to break free.
June 1979 and the Royal Highland Show at Ingliston, Edinburgh. My husband worked with the Milk Marketing Board and attended each year. I went along with the boys and remember it as an enjoyable day. The sunshine, the live music from bands, the food, the machinery, the animals, the smells, the crowds, the crafts, the grass, the flowers.
It was around this time that I came off the Chlorpromazine then told the psychiatrist, who wasn't pleased. But I wasn't bothered. I'd taken back control of my life and was getting back to myself. The depression had receded with the tapering of the antipsychotic. I'd got through the winter and was looking forward to the summer, the changing seasons. I was a stronger person for having survived psychosis and psychiatric treatment. The experience of withstanding and overcoming had given me confidence.
I had to do it all over again in 1984/5, after the birth of my third son, when experiencing a psychosis in the maternity hospital and then going voluntarily by ambulance in my nightdress into the psychiatric hospital. By this time in my own house, in Rigside, Lanarkshire. Forcibly drugged but no ECT on offer. One flew over the cuckoo's nest no doubt had an effect for I didn't see patients lining up for the shock treatment like I had in 1978. [see blog post 'memories of peer support in the psychiatric system circa 1984']
In this blog post about Dr Christmas's MD thesis I've got no further than the Anne Sexton poem which led to my reading more of this mother's story then sharing my story. Two mothers. Different stories yet things in common. Experiencing depression. Despair. Hope. Survival. Loss.
Foreword @dchristmas: science, enlightenment, women, lobotomies, bias and objectivity; "a surgically induced childhood" (10 March 2015)
Returning to Dr David Christmas's MD Thesis on NMD and a wee look at the Foreword headed up by this quote from Adam Smith, key Scottish Enlightenment figure at the time, born in Kirkcaldy, Fife.
Following the dark ages and the domination of religion, the advent of science brought light. At least among the academic male fraternity. It appeared to take another couple of centuries for women to be seen as human beings rather than chattels, allowed to vote and a purpose beyond childbearing. The world wars no doubt helped push women to the fore when the men were away at the Front. Fighting.
"1.1 Overview (1st para): "..the huge burden of treatment-refractory psychiatric illness is the driving force behind the continued use of neurosurgical techniques ..."
If this is the case then it makes sense to look at the reasons as to why
|film info on wikipedia|
Although there are still attempts made by some to keep ECT as a valid treatment when the drugs don't work. I blame the dominance of biological psychiatry and its influence on therapeutic engagement with people experiencing mental distress.
Biopsychosocial "interventions" with BIO in large letters, dominating the discourse. (see blog post on biobiobiopsychosocial BJPsych article) Looking in brains for the cause of mental anguish rather than listening to the person as to why they are feeling pain.
|1.1 Overview, page 2|
I think it's somewhat of an understatement to say that Moniz (credited with inventing lobotomies) and Freeman (ice pick lobotomies) were not "truly objective". The fact is that these men powered ahead with invasive brain surgery which severed the neural pathways to and from the prefrontal cortex, the anterior parts of the frontal lobes of the brain.
When searching for articles on these pioneers of brain surgery I came upon these interesting extracts by Mical Raz, MD, PhD, a physician and historian of medicine:
"The preoccupation of physicians and patients with the capacity to work, and the emphasis on productivity, industry and personal responsibility, were contributing factors to the success of lobotomy in the US.'Psychosurgery, Industry and Personal Responsibility', 1940–1965; Mical Raz, Soc Hist Med (2010) 23 (1): 116-133
"A Surgically Induced Childhood" from The Lobotomy Letters, The Making of American Psychosurgery By Mical Raz:
"In 1947 Freeman answered a letter from a frustrated father of a lobotomy patient. The father complained that his daughter was often uncooperative and childish, and that he and his wife experienced considerable difficulties in caring for her at home. “The best means of controlling such behavior,” Freeman advised, was “a rapid change from one type [of activity] to another around the house and frequent outdoor activity, lots of affection and once in a while a good old span[k]ing if she does not behave herself.” On this point, Freeman cautioned, “It may take two of you to get her down,” but the spanking “should be a good one and followed by a dish of icecream [sic], then a kiss and make up.”
This patient, however, was not a child. Rose Samuel, whom we met in the previous chapter, was a young woman in her late twenties. She had first been admitted to a psychiatric hospital in 1942, diagnosed with dementia pracox, a term later replaced by schizophrenia. After her discharge that same year, she improved sufficiently to live an independent life, and was married in 1945. In 1947, suffering from hallucinations and described as “disturbed and quite violent,” Freeman and Watts decided that a lobotomy would be advisable. The results were unsuccessful; the patient returned to live with her parents, who found her daily care challenging. Freeman explained to her father why he recommended such an unorthodox approach. “She is acting like a child,” he wrote, “and I think she should be handled like a child.”'
In the following interview, Mical Raz, author of What’s Wrong with the Poor?: Psychiatry, Race, and the War on Poverty discusses how the understanding of poverty and mental health has affected social policy in the United States:
Interview: Mical Raz on poverty, mental health, and U.S. social policy
going back to the abstract @dchristmas (the first cut is the deepest) (21 January 2015)
From p18, xviii:
I woke up this morning determining to do another post on Dr Christmas's 471 page thesis before getting caught up in other mental health matters with a critical voice. So I traversed the Table of Contents and Lists then the Abstract on my way to the Introduction where I had been before, for the second blog post. A few things caught my eye.
The research investigated 28 individuals, it doesn't state the male/female divide, over a 14 year period which averages out at 2 a year. I was checking out the reports on the Advanced Interventions Service website to see how many people are now getting ACING (anterior cingulotomies) on average per year. However there are only recent reports since 2010. (they seem to have stopped doing the anterior capsulotomy or ACAPS)
In 2011 there were 6 ACINGs while in 2010 there was one. 2012 there were 3, 2013 there was one although 5 were Planned. Statistics only tell us so much. I note there was one "formal" complaint in 2013 "the complaint was related to aspects of assessment and the patient did not progress further down a neurosurgical pathway".
Getting back to the thesis Abstract and it says that "seven individuals underwent a subsequent ACING". In other words they got brain surgery twice for mental illness. In laywoman's language. Very risky in my opinion. Especially since I've never believed in the mental illness construct which is pinned on a person when the treatment doesn't work. They tried to pin it on me.
Another quote from p18:
This paragraph doesn't reassure a non-scientific person such as I. "Clinically significant" according to Jacobsen & Truax: "A statistical approach to defining meaningful change in psychotherapy" which is what I came up with when searching definitions on the internet. A bit like going round in circles.
I'd like to hear from the voices of those who underwent the ACING, twice. Why did they ask for such an invasive treatment when the cause of the "mental illness" was to do with challenging life situations and trauma? Drug treatment and ECT not working. Why would destroying brain tissue be any better a solution? Is it about faith in science rather than a belief in yourself?
And finally, for this blog post, from Dr Christmas's thesis Abstract:
Is it good enough that no-one died among the 28, as a recommendation that anterior cingulotomies or ACINGs are an effective treatment for whom the psychiatric drugs and ECT don't work? What about the 2 out of the 28 who had the seizure and the haemorrhage, respectively? Don't they matter in the scheme of things?
I'd like to hear the stories from the people who went through the experience. I suspect that the attention they received, the rigorous testings, the many appointments, the relationships formed and the time spent keeping an eye on them was what really mattered rather than the couple of hours of brain surgery.
- - - - - - - - - -
A favourite song of mine at present from a Sixties Album I received from my son for Christmas:
"unnecessary and groundless interventions" @dchristmas (30 December 2014)
I agree with this statement, in terms of there being no good reason to persist with brain surgery for mental illness because the drug treatment hasn't worked. However the expressions "huge burden" and "driving force" I think reveal the almost messianic nature of neurosurgical manoeuvres. As if powering ahead and saving lives.
The phrase "treatment-refractory psychiatric illness" is like a double whammy to a person who has been hindered and not helped by psychiatric engagement. First do no harm.
Unfortunately it has been my experience of over 40 years engagement that a lot of harm has been done to my family, in the name of psychiatry. Eight of us, that I know of, through 3 generations, from the 1950's until now. From the advent of the antipsychotics to the polypharmacy of the present day.
You might say that we were "fortunate" not to be "treatment-resistant" although most, if not all, of us resisted the treatment at the first hurdle and were forcibly drugged until we complied. The major challenge was to escape the labels, the drugs, the stigma and the discrimination of "mental illness". Which I managed on 3 separate occasions. Disappearing back into the normal world of mad people.
Some of us stayed in the system, taking the drugs and putting up with the disabling side effects. Those of us who weren't overly depressed by the chemicals in our brains. However I got clinically depressed with the antipsychotic and had no choice but to resist then get off the drug as soon as I could. It got more difficult with the antidepressant era, Venlafaxine giving me suicidal ideation and bone loss.
But I broke free despite an eventual leg break and the scars to show for it. I don't walk with a stick as my balance is OK, having got off all the psych drugs, although I did lose some sight in one eye due to a burst blood vessel, very glad it wasn't my "good" eye. Another likely side effect of Venlafaxine which didn't lift my mood and probably raised my blood pressure, to boot.
I do wonder if I hadn't been an unbeliever in mental illness and hadn't tapered the psychiatric drugs myself, getting off them all under my own steam, resisting the lifelong labels, would I be a contender for NMD? If I was desperate, depressed, no hope of recovery, told that I had treatment-refractory psychiatric illness, would I have looked for the solution in my brain?
Christmas thesis strapline: "Functional neurosurgery for intractable mental disorder" (18 December 2014)
I have recently been engaging on Twitter and by Email with Dr David MB Christmas, Consultant Psychiatrist at the Advanced Interventions Service (formerly the NMD service), NHS Tayside, regarding his 2006 MD thesis 'Functional neurosurgery for intractable mental disorder: long term effects on mental health, neuropsychological performance, social function and quality of life'.
Here is a screenshot of Dr Christmas (I haven't personally had a meeting with the doctor although I have asked for it) from the RCPsych CPD Online page module 'Neurosurgery and neuromodulation for mental disorder':
I am a critical voice against neurosurgery for mental disorder and believe it should not be a considered option for treatment of people for whom the drugs don't work, the ECT doesn't work and who are desperately seeking relief from mental distress.
I'm not clinically trained and don't have a medical qualification, however I do have nearly 50 years experience of working with family members in mental distress, on an occasional and at times regular basis. Eight of my family over 3 generations have engaged with psychiatry, all of us forcibly medicated and some of us subject to ECT. These are my credentials.
This is the first of what I intend to be a series of blog posts about Dr Christmas's 471 page Thesis. I am not sure how it will pan out but I hope to work through the document and discuss points that stand out for me. I will also publish any responses from Dr Christmas if they transpire, with his permission. I would prefer a dialogue or debate.
I will try and resist emotional language when writing about the topic of NMD or brain surgery for mental illness, as I describe it. It won't be easy as my gut feeling about the procedure is that it's wrong on every level. However I want to explore this and to argue why I am justified in feeling this.
The strapline of the doctor's thesis I didn't like from the offset. The use of the words "functional" in respect of NMD and "intractable" linked to the term "mental disorder". For NMD, or anterior cingulotomy as performed at DAIS, is a procedure using an electrical current through a probe to destroy brain tissue:
"There is no international agreement on the best target site for the probe" MIND website
The term "mental disorder" is used in mental health acts, in my opinion, to justify compulsory treatment. I was given a (schizo) disorder label in 2002, it still sits in my notes even although I have made a full recovery. I contend because it wasn't either accurate or true. It was used to justify the cocktail of drugs I was prescribed which depressed me, gave me suicidal impulse, bone loss, high blood pressure, panic attacks, restlessness and eventually 3 fractures on my fibula when walking down a stair at a job interview.
The psychoses I experienced, after childbirth and at the menopause, had their roots in trauma and life transitions. They weren't to do with brain cells but were influenced by external situations and internal responses. The psychiatric drugs exacerbated the situation and caused further health issues.
[it's my grandchildren's Christmas service this morning in Dundee so I'm away to get ready for the off!]