Select Committee on Home Affairs Written Evidence


APPENDIX 45

Memorandum submitted by the Family Practice Press

THE TEMPORAL LOBE TIMEBOMB

    "When you hear the diagnosis, you and your loved ones will probably experience many of the same emotional reactions: denial, anger resentment, depression, resignation and acceptance. You may feel traumatized and depressed. While you cannot forget the news you have just received, it is common to become numb and hide or deny your initial feelings. The denial can last a few days to a few weeks, or even a few months. This initial stage is a very common reaction."

    American Brain Tumour Association statement

INTRODUCTION

  Following a number of violent attacks on myself and my son, after he was born my ex-wife was referred to psychiatrist who suspected a brain tumour. She then had two EEG tests which indicated a lesion. Her personality had also changed completely, the first sign of a tumour.

  There was consideration as to whether she had a Borderline Personality Disorder or a brain tumour. The Law states that a woman can have a "suspected personality disorder" but can only be labelled as such when she has committed a crime!

  Although her condition cannot be proved until further exploratory surgery, it is likely that she may have a meningioma.

What is a meningioma?

  A meningioma is a type of tumour that develops from the meninges, the membrane that surrounds the brain and spinal cord. There are three layers of meninges, called the dura mater, arachnoid and pia mater. Most meningiomas (90%) are categorized as benign tumours, with the remaining 10% being atypical or malignant. However, the word "benign" can be misleading in this case, as when benign tumours grow and constrict and affect the brain, they can cause disability and even be life threatening.

  In many cases, benign meningiomas grow slowly. This means that depending upon where it is located, a meningioma may reach a relatively large size before it causes symptoms. Other meningiomas grow more rapidly, or have sudden growth spurts. There is no way to predict the rate of growth for a meningioma, or to know for certain how long a specific tumour was growing before diagnosis.

  Most people with a meningioma will only have a tumour at only one site, but it is also possible to have several tumours growing simultaneously in different parts of the brain and spinal cord. When multiple meningiomas occur, more than one type of treatment may have to be used.

  Meningiomas vary in their symptoms and appropriate treatment options depending on where they are located.

  A primary brain tumor originates in the central nervous system, while metastatic brain tumors spread to the brain from other parts of the body. Meningiomas account for about 27% of primary brain tumors, making them the most common of that type.

Who is at risk?

  Meningiomas are most common in people between the ages of 40 and 70. They are more common in women than in men. Among middle-aged patients, there is a marked female bias, with a female: male ratio of almost 3:1 in the brain and up to 6:1 in the spinal cord. Meningiomas are very rare in children, with paediatric cases accounting for only 1.5% of the total.

  There is also the added problem that when tumours are sited on the Left Hand Temporal Lobe, the patient has no insight into his or her behaviour as the tumour actually switches off the insight.

  What is even more interesting and refers directly to problems encountered by numerous mothers after childbirth is as described by John R Mangiardi, MD and Howard Kane, Wm.

  The meningioma is the neurosurgeon's "friend" and often his most enduring challenge. For both the physician and patient, this tumor carries a true tag of benign. It also carries the possibility of "cure" in approximately 80% of cases. Thus, the long-term outcome for a patient with this tumor is a direct function of the skill and assiduousness of the surgeon who removes it.

  Elsewhere in the Brain Surgery Information Center's Primer on Brain Tumor Biology, it was mentioned that "benign" often does not really mean benign. Be assured that in this case, the tumor really is benign.


  As mentioned earlier in the Primer, each type of brain tumor arises from a specific cell type. The cell of origin for the meningioma is call the arachnoid cap cell, found on the surface coverings (called meninges) of the brain in the paccionian granulations. These serve as the one-way valve system between the water system of the brain and the veins that drain from the brain to the heart.

  Interestingly, these tumors have an embryologic relationship with cells found in the muscle layer of the utereus. In fact, it is exceedingly difficult for the pathologist to distinguish the meningioma from the fibroid tumors of the utereus under the microscope. Also, they share the characteristic female hormonal receptors (estrogen and progesterone) on their cell surfaces. This characteristic has lead to the testing of anti-estrogen receptor agents, such as tamoxifin, as a growth-inhibiting agent in these tumors. Clinical studies to date have failed to provide siginificantly positive results.

  Meningiomas are rarely malignant in their behavior. But when malignant, meningiomas grow rapidly and are destructive; they are quite difficult to treat, and recur oftentimes in less than a year after surgical removal. They are also difficult for the pathologist to diagnose under the microscope. Probably the only finding that correlates well with the diagnosis is that of numerous cells seen in division ("mitosis"). The pathologist may occasionally speak of brain and skull invasion, cells with an abnormal appearance, or other bizarre findings, however none of these completey fit the diagnosis. Ultimately, the diagnosis is determined by the activity of the particular tumor over time.

  A cousin to the meningioma is the hemangiopericytoma. The cell of origin for this tumor is the perivascular pericyte (located around blood vessels). Although very similar to the benign meninigiomas, these tumors tend to recur with great rapidity (less than one year) and frequency. Some physicians classify these tumors with the malignant meningiomas.

LACK OF INSIGHT—A BARRIER TO VOLUNTARY TREATMENT

  "Lack of insight" (the inability of a person to realize, or accept, that he is suffering a mental illness) has long been believed to stem from defensive denial, partly because of the stigma associated with these diseases. While denial no doubt contributes to some people with mental illness refusing treatment, research shows that lack of insight just as frequently results from the underlying brain disorder itself. The brains of those who suffer from this particular symptom of mental illness are often structurally different from those who do not. Treatment refusals stemming from lack of insight are thus not "informed medical decisions." It is the malfunctioning of the brain itself that causes the impaired decision-making. There is nothing civilly right about denying treatment to people with impaired decision-making who are too sick to obtain help for themselves. Many scientists in numerous professional publications have reported significant correlation between poor insight and deficits in frontal lobe functioning. Others, some of whom are quoted below, have reported on the devastating consequences of the lack of insight: Impaired insight is a very common symptom of schizophrenia and bipolar disorder. Both inpatients and outpatients with schizophrenia and bipolar disorder (manic depression) have shown the same rate of unawareness: about 50%. (Husted J Journal of the American Academy of Psychiatry and Law Vol 27, no 1, 1999. Amador X, et al. Archives of General Psychiatry, 1994. Being unaware of being ill—lacking insight—is strongly correlated with non-adherence to treatment. (Amador X; Strauss D; Yale S; Gorman J and Endicott J, The American Journal of Psychiatry 150:873-879, 1993.)

  Patients with schizophrenia and schizoaffective disorder with poor insight have very poor adherence to either psychosocial treatment or medication even when they have expressed their desire to participate and work at the program. (Lysaker P; Bell M; Milstein R; Bryson G and Beam Goulet J, Insight and Psychiatry Vol 57, November 1994.)

  Lack of insight not only leads to noncompliance with community treatment but leads to the revolving door of involuntary hospitalizations. (McEvoy J, Freter S, Everett G, Geller J, Appelbaum P, Apperson L and Roth L, Journal of Nervous and Mental Disease 177(1): 48-51, 1989.)

  There have been fewer studies of insight as it relates to affective disorders such as bipolar disorder, nevertheless, as in schizophrenia, studies of affective disorders find that lower levels of insight are correlated with a poorer course of illness, lack of adherence to treatment and increased involuntary hospitalizations. (Ghaemi N and Pope H, Jr, Lack of Insight in Psychotic and Affective Disorders: A Review of Empirical Studies. Harvard Review of Psychiatry, May/June: 22-33, 1994. Also see Amador et al, Unawareness of Illness in Schizophrenia, Schizoaffective and Affective Disorders. Archives of General Psychiatry, 1994.)

  The inability of the noninsightful patients to understand they have a brain disorder or to accurately evaluated their living conditions and plan for daily needs supports the necessity for some form of "community Assisted Treatment." Without supervision or court order, the person may not seek treatment, or if temporarily coerced into treatment when hospitalized, be unable or unwilling after discharge to comply with the treatment regime. (Husted, J, Journal of the American Academy of Psychiatry and Law Vol 27, no 1, 1999).

  This vital piece of the jigsaw to find the cause of my ex-wife's problem is key to understanding the problem and the mistakes made by numerous professionals. Her father had a benign tumour on the left hand side of his brain removed which gives the genetic link to her problems. However, she had an ovarian cyst removed before we were married in July 1987. This was considered as a "one-off" by the specialist Dr Lloyd and Dr Martin Scurr by the term "no sequalae." What they never considered was that the ovarian cyst which, as you can see above is a cousin to a meningioma, could have been the secondary to the tumour growing in her brain—the silent killer.

  Her calm behaviour during pregnancy can be explained by the lack of estrogen feeding the tumour. When my son was born there was a rush of the hormone into her body thus feeding the tumour which had a growth spurt. Thus, subconsciously she blamed my son for her change of behaviour.

  One can easily see the mistakes made by lawyers and doctors alike after this change, they had never met her before thus accepted her as a difficult subject to deal with, outwardly pretty and treasonable, with this crazy husband who kept complaining about her behaviour. Another problem was that, given the site of the tumour, she could not remember her extreme behaviour when questioned.

  Therefore you can see of the danger of the blanket diagnosis of Personality Disorder when a tumour could be the cause of many of the problems in our prisons. St Andrews Hospital also informed me that a patient can have a Personality Disorder but cannot not have one with a positive EEG. This blanket supposition has clearly put children in danger and many may have died.

  A vital task for Government and the Law is to consider a review of all child abuse cases involving suspected Personality Disorder? As you can see women are three times more likely to suffer than men, this could solve a lot of child abuse cases and bring treatment of those female sufferers before they are sent to prison. It will also aid lawyers in the Family Division when preparing child abuse and domestic violence cases.

BORDERLINE PERSONALITY DISORDER (BPD)

  Borderline Personality Disorder (BPD) is one of the most controversial diagnoses in psychology today. Since it was first introduced in the DSM, psychologists and psychiatrists have been trying to give the somewhat amorphous concepts behind BPD a concrete form.

  Some researchers, like Judith Herman, believe that BPD is a name given to a particular manifestation of post-traumatic stress disorder: in Trauma and Recovery, she theorizes that when PTSD takes a form that emphasizes heavily its elements of identity and relationship disturbance, it gets called BPD; when the somatic (body) elements are emphasized, it gets called hysteria, and when the dissociative/deformation of consciousness elements are the focus, it gets called DID/MPD. Others believe that the term "borderline personality" has been so misunderstood and misused that trying to refine it is pointless and suggest instead simply scrapping the term.

What causes Borderline Personality Disorder?

  It would be remiss to discuss BPD without including a comment about Linehan's work. In contrast to the symptom list approaches detailed below, Linehan has developed a comprehensive sociobiological theory which appears to be borne out by the successes found in controlled studies of her Dialectical Behavioral Therapy.

  Linehan theorizes that borderlines are born with an innate biological tendency to react more intensely to lower levels of stress than others and to take longer to recover. They peak "higher" emotionally on less provocation and take longer coming down. In addition, they were raised in environments in which their beliefs about themselves and their environment were continually devalued and invalidated.

DSM-IV criteria

  The DSM-IV gives these nine criteria; a diagnosis requires that the subject present with at least five of these. In I Hate You—Don't Leave Me! Jerold Kriesman and Hal Straus refer to BPD as "emotional hemophilia; (a borderline) lacks the clotting mechanism needed to moderate his spurts of feeling. Stimulate a passion, and the borderline emotionally bleeds to death."

  Traits involving emotions:

  Quite frequently people with BPD have a very hard time controlling their emotions. They may feel ruled by them. One researcher (Marsha Linehan) said, "People with BPD are like people with third degree burns over 90% of their bodies. Lacking emotional skin, they feel agony at the slightest touch or movement."

  1.  Shifts in mood lasting only a few hours.

  2.  Anger that is inappropriate, intense or uncontrollable.

  Traits involving behavior:

  3.  Self-destructive acts, such as self-mutilation or suicidal threats and gestures that happen more than once.

  4.  Two potentially self-damaging impulsive behaviors. These could include alcohol and other drug abuse, compulsive spending, gambling, eating disorders, shoplifting, reckless driving, compulsive sexual behavior.

  Traits involving identity:

  5.  Marked, persistent identity disturbance shown by uncertainty in at least two areas. These areas can include self-image, sexual orientation, career choice or other long-term goals, friendships, values. People with BPD may not feel like they know who they are, or what they think, or what their opinions are, or what religion they should be. Instead, they may try to be what they think other people want them to be. Someone with BPD said, "I have a hard time figuring out my personality. I tend to be whomever I'm with."

  6.  Chronic feelings of emptiness or boredom. Someone with BPD said, "I remember describing the feeling of having a deep hole in my stomach. An emptiness that I didn't know how to fill. My therapist told me that was from almost a "lack of a life". The more things you get into your life, the more relationships you get involved in, all of that fills that hole. As a borderline, I had no life. There were times when I couldn't stay in the same room with other people. It almost felt like what I think a panic attack would feel like."

  Traits involving relationships:

  7.  Unstable, chaotic intense relationships characterized by splitting (see below).

  8.  Frantic efforts to avoid real or imagined abandonment.

    —    Splitting: the self and others are viewed as "all good" or "all bad." Someone with BPD said, "One day I would think my doctor was the best and I loved her, but if she challenged me in any way I hated her. There was no middle ground as in like. In my world, people were either the best or the worst. I couldn't understand the concept of middle ground."

    —    Alternating clinging and distancing behaviors (I Hate You, Don't Leave Me). Sometimes you want to be close to someone. But when you get close it feels TOO close and you feel like you have to get some space. This happens often.

    —    Great difficulty trusting people and themselves. Early trust may have been shattered by people who were close to you.

    —    Sensitivity to criticism or rejection.

    —    Feeling of "needing" someone else to survive.

    —    Heavy need for affection and reassurance. Some people with BPD may have an unusually high degree of interpersonal sensitivity, insight and empathy

  9.  Transient, stress-related paranoid ideation or severe dissociative symptoms. This means feeling "out of it," or not being able to remember what you said or did. This mostly happens in times of severe stress.

  Miscellaneous attributes of people with BPD:

    —    People with BPD are often bright, witty, funny, life of the party.

    —    They may have problems with object constancy. When a person leaves (even temporarily), they may have a problem recreating or remembering feelings of love that were present between themselves and the other. Often, BPD patients want to keep something belonging to the loved one around during separations.

    —    They frequently have difficulty tolerating aloneness, even for short periods of time.

    —    Their lives may be a chaotic landscape of job losses, interrupted educational pursuits, broken engagements, hospitalizations.

    —    Many have a background of childhood physical, sexual, or emotional abuse or physical/emotional neglect.

CONCLUSION

  There are only 3,000 brain tumours a year in the UK, thus few GPs see a sufferer and his or her relatives. the fact that meningiomas as three times more common in women than men must flag up concern that not enough research ahs been done on the subject as the current statistics do not reflect this number.

  We would ask for an immediate Royal Commission for research into brain tumours and their cause of domestic violence in particular.

7 January 2008





 
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