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.
