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

______________________________________________________________________________

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.

_____________________________________________________________________________

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

_____________________________________________________________________________

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.

Case Study # 14 Nick Nichols and the Story of his Brachial Plexus Schwannoma

Hello everyone!  Welcome to our 14th Schwannoma Case study, this one featuring Nick Nichols and the story of his Brachial Plexus Schwannoma.  I get questions frequently about this kind of Schwannoma, and it was one for which we really have needed more firsthand stories and information.  We thank Nick very much for taking a good bit of time to write out his story, and we wish him the best for his continued recovery! - Neil
______________________________________________________________________________________

1)    How old were you at the time of your diagnosis?

That’s a kinda complicated question in my case. Allow me to tell a bit of backstory. I was a junior in high school in 2001 when I first noticed a twinge in the outer thigh of my left leg. I didn’t think anything of it until it continued. So upon feeling the area I noticed there was a small nodule there about the size of an M&M. Whenever I touched it the right way it would shoot a sensation like electricity throughout my leg. I asked my family doctor and he felt it but didn’t think it was anything serious. He was a good doctor, but told me as long as it wasn’t growing the best thing to do would be to leave it alone. I was satisfied with the answer as it was more of a nuisance than anything else.

Flash forward a few years to 2005. I was at work atop a ladder lifting a box filled with office electronics I felt a familiar twinge but this time on the right side of my neck. I put the box up and felt. Sure enough there was the same M&M size nodule. Same sensation. The realization that there was another of those growths in my body filled me with dread. I had dealt with the one on my leg but this one seemed different. Over the next several months I found out just how different this one was. The size stayed the same, just like the one on my leg, but the pain was so much worse. It got to where I had to take an over the counter(not a controlled drug) pain pill every morning because it was pretty much a given that it would plague me at some point during the day.

The pain wasn’t always bad. Some days the nodule wouldn’t give me any trouble at all and would allow me to live my life like normal. But other days it would remind me just how much sway it held over my body, especially my right arm. Finally when I knew these things weren’t going away on their own I decided to take what steps I could to get rid of them..at least the one in my neck. I couldn’t live like that for the rest of my life.

So in 2006 at the age of 22 I went to an ENT(ear, nose and throat) doctor. He ordered an ultrasound which showed there was a nodule in my neck, but apart from that, nothing. He said it could be a swollen lymph node or a tumor, most likely benign. He referred me to an orthopedic who was apparently very good with tumors on the neck.

The orthopedic checked me out and told me it could be something called a schwannoma tumor. I thought, “Never heard of one of those before.” But to get a definitive answer he needed a biopsy. If it was a schwannoma he told me he could remove it. Music to my ears.

Let me preface this next part. I tend to be a positive person. I rejoice in the life my God has given me and I’m thankful for all of the grace he gives me, none of it deserved. My life hasn’t been all sunshine and roses, but for the most part I’ve never had very many dark days. So when I tell you what happened next was the single worst experience in my life, I mean it.

I went to the biopsy appointment. I’m not afraid of needles. I don’t like getting shots, but I’m not crippled by the thought of them. So I wasn’t dreading it or anything. They gave me something to numb the area in my neck and then they got the biopsy needle out and took the plunge. Do you know when people say “That struck a nerve”…I know why they say that. As soon as the needle touched the nodule I lost control of my body as it seized. It felt like the nerve was a guitar string and when they plucked it with the needle the string resonated throughout my body. I could feel it to my toes. Seeing my extreme discomfort the two medical staff members who were conducting the procedure paused. They were sympathetic to the torture I was going through, but knew they needed the biopsy. So I gritted my teeth and did the best I could as they pushed on. But I couldn’t take it. It felt like I was being shocked over and over again every time they touched the growth. I finally told them I couldn’t handle it anymore and they left me in the room to compose myself. I was still tense when I was walking through the hallway to the parking garage and the automatic door began to close before I had a chance to get through. I cowered in fear of something touching me again before I even knew what had happened. I’d never felt such a primitive reaction to fear before in my life.

The ENT doctor told me(surprise!) they didn’t get enough tissue from the biopsy to be conclusive. Based on the way he told me he was aware of the torture I was put through. He said the only option we had left was to do the surgery. The ENT would start the surgery and if the growth was a lymph node he would remove it, but if it was a schwannoma he would call the orthopedic while I was still under anesthesia.

I really wasn’t nervous about the surgery. I was excited at the prospect of not being in pain anymore. Precautionary tests were done to make sure I was healthy enough for the surgery and everything came back fine. The day finally arrived and I went under. I was so eager to find out what in the world was on my neck. The nurses wheeled me back to the operating room and strapped my arms to the side in a sort of horizontal crucifix position. They put an adapter on the bed under my head to turn my head to the side and expose it on the right side. They told me I would soon be asleep.

I started to come to. I vaguely remember the ENT being in the recovery room when I woke up. The first thing I mumbled out of mouth was, “What was it?” The ENT told me it was a schwannoma. So to answer the question, I was 22 when I was diagnosed. But the doctor told me it was gone now. It was gone and I was relieved.

I found out after the surgery that there was a big scare at the hospital while I was under. All patients and medical personnel were evacuated for about an hour when a fire alarm went off. It was set off by some smoke from two electrical motors overheating. The only people left in the building were those who were in surgery. Someone told my parents, who must have been terrified, that the surgery was going fine and the doctors had a way out if something happened.

The ENT told me the orthopedic had to remove about 10% of the nerve of my brachial plexus where the schwannoma was located. Looking at diagrams now it was probably the upper trunk of the brachial plexus and it was only just below the skin, which must be why it was so sensitive.

So that was one schwannoma down. I still have the one in my leg but at the moment the pain is manageable. When it gets to the point that I need to have it removed I’ll seek a doctor who has a history of removing schwannomas.
2)    Do you have any history of Schwannomas in your family?

Not that I’ve ever heard of.

3)    Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis?

The right side of my neck, a little above my collar bone. The symptoms started as a tingling sensation but eventually it was painful and couldn’t be touched or bumped, which would lead to my whole body tensing up and pain in my neck and right arm.
4)    Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)

My surgery was successful and nothing ever resurfaced. I don’t really know many details about how they removed it. I think I remember them saying something about a robotic device that helped the doctor with his precision.

I still feel a little bump about half the size of the schwannoma. It’s most likely scar tissue but it’s a little sensitive, probably because it’s near the nerve. I just hope and pray it isn’t the schwannoma coming back. But I don’t think it’s coming back.

5)    Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?

I would ask if the doctor has ever performed surgery to remove a schwannoma. My doctor(the orthopedic) assured me he knew what he was doing and that added so much comfort to a very scary situation. Ask if there will be any long term issues after the surgery. And ask the chances of the schwannoma returning.

6)    Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you?  (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)

The recovery was really a breeze. I only had minimal pain the first few days after the surgery. They told me not to lift heavy objects for several weeks, but eventually I was able to lift pretty much everything I could before the surgery. The details of my issues with lifting are described in the next answer.

7)    Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)
I’ve noticed that I can’t bowl more than a couple of games or my neck really hurts the next day. I don’t even do that very often, so it isn’t a huge deal.

More of an issue in recent days is that I’m not able to hold my 14-month-old daughter for very long. This week I had to take her to the doctor and didn’t want to put her down where she could get germy. I could tell my neck was beginning to hurt so I asked a family member to hold her some of the time. That helped a lot but for the next few days I couldn’t hold her with my right arm for very long at all. It isn’t quite the same feeling as a pulled muscle but I guess it’s similar. It’s a very dull, deep ache along the nerve where the tumor had been attached. But I’m more than happy to deal with this discomfort as long as the schwannoma is gone for good.

Schwannoma Case Study # 13, Susan Chapman Ruggiero & The Story of a Schwannoma in her Foot

Hello everyone!  Welcome to our 13th Schwannoma Case Study.  In this Case Study our friend Susan Chapman Ruggiero tells us of the discovery and removal of a Schwannoma in her left foot.  We thank Susan for taking the time to tell her story, and wish her well in her continued recovery! - Neil

_______________________________________________________________________________ 

1)  How old were you at the time of your diagnosis?

I was fifty-five when I first approached a doctor about my schwannoma. It was removed before I turned fifty-six.

2)  Do you have any history of Schwannomas in your family?

Not that I know of.

3)  Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis?

My schwannoma was located inside the bottom of my left foot. It presented similar to a blister about the size of a pinky finger nail about three years ago. I asked several of my regular doctors about it but they all just shrugged.  The ‘blister’ doubled in size over the last year to about the size of a thumb nail. I use this description because that is what it looked like. A shiny slightly raised bump. I had no symptoms related to this bump.  There was never any pain or discomfort from it.  I went to a podiatrist that my husband sees for nail issues.

4)   Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet).

My schwannoma was removed through the bottom of my foot. I underwent general anesthesia at an out-patient surgical facility. The incision required nine stiches to close. I was in and out in four hours.

5)   Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?

We had no idea what this was until three weeks after it had been removed. X-rays revealed a mass. An MRI proved it was not vascular. My doctor knew little more than I did when she went in. She shared with me just the typical information for any foot surgery. She removed the tumor and described it as the size of an extra-large egg, totally encapsulated and benign. I would have liked to speak with someone who had gone through any type of foot surgery that was as disabling as this. I was not prepared for what was ahead.

 6)   Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of most help to you?  (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)

My recovery has been successful, but in the beginning it was absolute hell.  The pain was incredible.  I have had much pain from seven broken bones and multiple surgeries but nothing prepared me for this. The medications I was given were not effective at all. Basically I was unable to walk for six weeks.  I employed a knee scooter for some mobility in my home. I did not leave my house except for doctors’ visits to examine my incision and to have the stiches removed. They told me there would be some pain and that there would be improvement every day and both these were true. They told me to use ice and I did not until I was walking and needed relief.  It may have helped earlier. The removal of the stiches about three weeks after surgery set me back about a week and included the return of bleeding and intense pain.

Three months after surgery, I am completely confident in my daily activities. There is still some pain from the scar, walking barefoot is out of the question.  I have random shooting pain from the nerve that the tumor grew off – I think. I expect this will diminish as the nerve heals. I keep rubbing assorted lubricants into the scar in hopes it will diminish as it feels like I am walking on a piece of string all the time.

7)  Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)

I have not explored all my previous activities i.e.: skiing or wind surfing, but I am not afraid to face them when the opportunity presents itself. I have been swimming in the ocean and several lakes (with swim shoes). I am also back to my daily ¾ mile swim in the college pool. I always have the needed materials to protect the scar on hand. I do worry that I may split the scar open if I stress the area too much.

I could not have done this without the dedicated help of my husband.

I am grateful for all the information that is currently available on this blog. I continually return to learn more about this ailment. I wish I knew more about my tumor and had this information before embarking on this endeavor.  

If anyone has any questions or comments, I can easily be reached at buffysxc@comcast.net. 

With my nieces and nephews, the reason I need two good working tumor-less feet!