Monday, December 29, 2014

A Q and A with Dr. Anne Barnes, Psychiatrist, on the Mental Aspects of Dealing With Schwannomas & Chronic Pain

Hello everyone! This week I'm pleased to present to you a very special Q and A with Dr. Anne Barnes, psychiatrist (*Small note worth mentioning - psychiatrists are also medical doctors, so that is why I much preferred to have a psychiatrist assist us, because they stand a better chance at also understanding the physical issues Schwannoma Survivors endure).  Dr Barnes has graciously volunteered her time to answer 5 questions on the mental aspects of dealing with Schwannomas and chronic pain.  And since this Q and A covers a slightly different area than previous ones - I wanted to be clear about one thing; the only goal I have here in introducing this subject is related to the very real fact that many Schwannoma Survivors, including myself, have admitted privately that there is a mental component to dealing with Schwannomas.  People have confided this to me privately many times, and I have written about it as well.  This Q and A is meant, very simply, to learn a bit more about this reality, and hopefully help us learn how to keep our mental health in the best possible shape, while dealing with the physical issues.  We thank Dr. Barnes for her time and insights, and you can read a brief bio about her at the end of this blog.  Have a great day! Neil


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1)  Nearly all of those who are survivors of Schwannoma tumors have had to deal with pain- sometimes a great deal of it, and even severe chronic pain.  As a mental health professional, can you tell us a little bit about some of the techniques that concerned psychiatrists use in order to help the patient combat chronic pain, and hopefully regain a better quality of life, mentally and physically.

Many mental health professionals (including psychiatrists, psychologists, social workers, and marriage and family therapists) have been trained in psychotherapies that help patients combat chronic pain.  Cognitive Behavioral Therapy (CBT) is one form of therapy with a significant evidence base for its effectiveness in treating chronic pain.  In CBT, a person learns to notice the negative “automatic thoughts” that surround the experience of chronic pain.  These thoughts are often distortions of reality.  Cognitive therapy can teach a person how to change these thought patterns and improve the experience of pain.  CBT teaches pain patients how to avoid fearful anticipation, get rid of discouraging thoughts, and adjust everyday routines to help prevent physical and emotional suffering.  CBT is also a proven treatment for depression and can reduce symptoms of anxiety in chronic pain. 

CBT is also a form of skills training and gives patients coping skills.  Patients find that they can use these coping skills in other stressful areas of their lives. 

Examples of coping skills that patients are encouraged to develop include:
-Staying active and continuing to do activities they enjoy
-Exercising (especially low impact exercise such as yoga or walking)
-Developing social connections (e.g., making a lunch date with a family or friend)
-Utilizing distraction techniques when pain flares (e.g., engaging in a pleasant experience such as taking a walk or watching a movie)
-Utilizing relaxation techniques such as meditation or breathing exercises to keep stress levels under control.  (Jon Kabat-Zinn, PhD has done wonderful work on mindfulness meditation for chronic pain and has CD’s available that teach this)
-Other forms of self-care including healthy sleep and eating habits

CBT can be provided individually or within a group format.  Sessions are usually 1-2 hours in length and treatment lasts approximately 10 to 20 sessions.  CBT does involve homework and active participation from the patient in order to reinforce the skills learned.

The goal of CBT in regard to chronic pain is symptom reduction and functional improvement, rather than complete pain relief. 

To treat chronic pain, CBT is most often used together with other methods of pain management.  For example, some antidepressants have been shown to help reduce pain and may be prescribed as part of a patient’s pain treatment plan. 



2)  There is a sub-group of people who are Schwannoma Survivors who have the genetic condition of Schwannomatosis.  They may have anywhere from a handful of tumors in their body all the way up to some who have too many to count.  As a counselor, what are some good first steps in trying to deal with a condition that may be inoperable?  How might a counselor help a person come to grips with what such a serious condition might mean for their mental health going forward?

I think that good first steps include helping to empower a patient as much as possible in understanding their illness and gaining support from others.  A counselor may encourage patients to not isolate themselves and to reach out to family and friends for support.  If a patient does not have a solid support system already in place, then the counselor may support them in taking steps to build one.  For example, there may be support groups available or other community resources that the patient could utilize.   A counselor may also encourage patients to learn as much as possible as they can about their condition. In this way, patients can ensure that they are getting the best treatment available.  This will also help increase a patient’s sense of independence and control.  Counselors can also help ensure that patients have medical support from experts they trust and encourage patients to talk to their health providers openly about ongoing questions and concerns regarding their illness as well as the treatment they are being provided (e.g., concern about side effects from medications or pain).  Counselors may also encourage patients to keep doing the things they like to do, especially as this can help them remain connected to others and boost their self-confidence.

A counselor should also be aware of the increased risk of major depressive disorder occurring in patients with a chronic illness and to also monitor for symptoms associated with this disorder.  Living with a chronic illness is a challenge and it is normal for patients to feel grief and sadness as they come to grips with their condition and its implications.  However, if these feelings don’t go away (i.e., last for more than a few weeks) or patients start having trouble sleeping or eating or if they lose interest in the activities they normally enjoy, these may be symptoms of depression. 

Symptoms of depression include:
-Ongoing sad, anxious or empty feelings
-Feeling hopeless
-Feeling guilty, worthless, or helpless
-Feeling irritable or restless
-Loss of interest in activities or hobbies once enjoyable
-Feeling tired all the time
-Difficulty concentrating, remembering details, or making decisions
-Difficulty falling asleep or staying asleep or sleeping all the time
-Overeating or loss of appetite
-Ongoing aches and pains, headaches, cramps, or digestive problems that do not ease with treatment
-Thoughts of death or suicide attempts

Early diagnosis and treatment of depression can ease distress along with the risk of suicide.  It can also improve the patient’s quality of life and increase their likelihood of sticking with the treatment plan that their medical team has created for them.



3) Several people in the Schwannoma Survivors group have been quite upset by having been told by doctors that the source of their physical pains were mental.  Some doctors have suggested that they see a mental health professional- when what is actually going on is that doctors attending to the physical condition are sometimes mis-diagnosing an undiscovered physical problem as a mental one.  So when it turns out that the problem later proves absolutely to be physical, survivors are understandably none too happy at the implication “It was all in your head”.  With that in mind, I am curious to know what kinds of signs a psychiatrist would look for if a misdiagnosed patient (someone who actually had a tumor or serious medical issue that is physical in nature) shows up at your door, and what kinds of signs might alert you to the fact that this person’s condition has a physical, rather than mental cause? 
  
If a patient feels that their doctor is unable to diagnose the cause of their pain, is unfamiliar with their type of pain, or is unsure of how to treat it, then I would encourage them to ask for referral to another doctor who has experience with their particular symptoms or disease.  Also, if pain lasts much longer than expected, or a primary care doctor or specialist hasn’t been able to treat his or her chronic pain satisfactorily, then a patient could ask for a referral to a pain specialist. 

Signs that would indicate that the pain probably has a physical cause and that I would be very concerned about would include:

-Changes in bowel or bladder function
-Numbness and/or tingling in the arms and/or legs
-Muscle weakness and loss of balance/falls
-Chills or fever
-Unintentional weight loss
-Headaches that do not go away or get better with treatment
-Shortness of breath
-Nausea, vomiting, diarrhea, loss of appetite

These symptoms could be signaling a serious problem that requires medical intervention soon.



4) Could you expand a little on the links between depression and chronic pain?

Some of the overlap between depression and chronic pain can be explained by biology.  Depression and chronic pain share some of the same neurotransmitters which are brain chemicals that act as messengers traveling between nerves.  Depression and chronic pain also share some of the same nerve pathways.  The impact of chronic pain can force someone to struggle with tremendous losses, such as the loss of sleep, exercise, social networks, relationships, sexual relationships, or a job and income.  These losses can make a person feel depressed.  Depression then magnifies the pain and reduces one’s coping skills.

People who suffer from both chronic pain and depression (as opposed to only chronic pain) often report experiencing more intense pain as well as feeling less control of their lives.  They also tend to engage in more unhealthy coping strategies. 

Because chronic pain and depression are so interconnected, they are often treated together.  Since chronic pain and depression involve the same nerves and neurotransmitters, antidepressants are used to treat both chronic pain and depression.  Antidepressants work on the brain to reduce the perception of pain.  Research has demonstrated the effectiveness of tricyclic antidepressants such as Elavil and doxepin in treating chronic pain.  However, the side effects associated with the tricyclic antidepressants sometimes limits their use.  There are newer antidepressants available such as Cymbalta and Effexor that act on the neurotransmitters of serotonin and norepinephrine.  These newer antidepressants also seems to work well for chronic pain and tend to have fewer side effects than the tricyclic antidepressants.

Exercise can also be helpful in chronic pain.  Exercise also helps improve depression by releasing the same kind of brain chemicals that antidepressants release.  Patients should consult a physician about designing an exercise plan that will be safe and effective for them as this can be helpful in treating both chronic pain and depression.



 5)  One issue that does come up with tumor survivors is how we deal with family.  We recently had a very courageous group member write a message- which was something of a “coming out” about their own continued pain and also the discovery of what may be another tumor in their body.  Other people seem to prefer to deal with their illness/tumors very privately.  Do you find, in your capacity as a counselor, that one strategy is more beneficial than the other?


I think that this is a deeply personal decision for each patient and that one strategy is not always going to be more beneficial in every situation.  However, I do encourage patients to develop as much of a support system in whatever way they can, to not isolate themselves, and to reach out to family and friends if possible.  Some patients may have reasons for not wanting to tell others, however.  Some patients may have a history of unhealthy family dynamics or abuse by family members and don’t experience these family members as being supportive.  Being able to decide who and who not to tell may provide a sense of control in a situation where the patient feels like they have very little control.  They also may have professional concerns regarding how they will be treated if their work finds out.  Some patients may also not want to have others bear the perceived emotional burden of their situation.  They may just want to be treated “normally” instead of as in the sick role and derive strength from that. However, I do think that it is important for the counselor to work through this decision making process (regarding whether or not to share their diagnosis with family or friends) with the patient.    A counselor can also help patients to identify other sources of support (e.g., support groups, community resources) that can be helpful whether or not they decide to share their diagnosis with their family or friends.  A counselor can also provide a significant source of support for patients in their treatment relationship as well.

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A Brief Bio of Dr. Barnes:


Dr. Barnes is a psychiatrist who is board-certified in both child/adolescent psychiatry as well as adult psychiatry.  She is a member of the American Academy of Child and Adolescent Psychiatry.  She grew up in North Carolina and attended medical school at the Brody School of Medicine at East Carolina University, performed her residency in adult psychiatry at Emory University, and did her fellowship in child and adolescent psychiatry at Stanford University.  Dr. Barnes believes in providing evidence-based treatments as well as focusing on the strengths of the individuals and families that she works with.  Dr. Barnes also has a special interest in integrative and holistic treatments in mental health and is a diplomate of the American Board of Integrative and Holistic Medicine.  She is particularly interested in treating individuals with ADHD, mood disorders, and anxiety.   She has a private practice and also works at a community mental health center in San Francisco, CA.  She can be reached at annebarnesmd@gmail.com

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Disclaimer: Dr. Barnes assumes no liability whatsoever for the comments or advice offered in the content of this blog.  Dr. Barnes has offered her advice generally on the issues relating to treatment of Schwannomas - however Dr Barnes and the Schwannoma Survivors & Schwannoma Fighters group always insist that a person should make all major medical decisions in consultation with one's own physician.