From Linda M. Rio, MA, Marriage & Family Therapist: A young woman called me last year to make an appointment. She told me she had recently had endoscopic neurosurgery for craniopharyngioma. She was suffering from severe anxiety and depression. She hoped to find a mental health professional who would understand the critical link between the endocrine system and her mental health symptoms. When searching her insurance for mental health providers, she told me she was somewhat shocked to find my name on the list, having just heard about my book and realizing my office was geographically close to her home. Most often, it is nearly impossible to find a mental health professional with any knowledge about the pituitary, adrenal, or the many disorders that affect the endocrine system. Hopefully, things are changing. I believe patients and their families can help advance knowledge and awareness in medical and mental health communities.
For this particular woman (identity kept private), just being able to talk with someone who understands that, as impressive as today’s neurosurgical techniques are (at least in the hands of only the most expertly trained and experienced neurosurgeons), life isn’t healed after surgery. Surgery can heal the body, but the havoc often left in the aftermath of a tiny growth at the base of the skull is frequently much larger than the size of a tumor. Emotional debris may be scattered far and wide due to emotional, cognitive, and psychological changes due to many of the disorders of the pituitary gland. When a patient is lucky enough to find the right surgeon and treatment center, this is often just a part of the journey toward health. And, often, patients search for years, even decades, for the right medical help. Patients will often say they just “knew” or “had a feeling” that what their primary doctors, OBGYNs, psychiatrists, and therapists told them was not the root of what was causing widespread symptoms, physical and psychological. Patients are often told, “It’s all in your head” or “you just need not be so sad, depressed, etc.”. Worse yet are those primary doctors, nurses, family, and “friends” who tell someone they “just” need to lose weight or even being disparaged or rejected by being called “fat,” or irritable, or stupid, or…. And, what an experience when an endocrinologist or neurosurgeon finally confirms the true diagnosis! Finally getting an answer, someone finally believing there is a real problem, can be quite a relief! But then comes the reality, “I have to have neurosurgery!”
My experience in speaking with patients and family members is that often long before the discovery of hormonal imbalances, MRI scans, and other numerous medical explorations, there are mental health signs and symptoms predating any actual medical diagnosis of a pituitary abnormality. It is also my experience that mental health symptoms may lift following surgery or other treatments but often not rapidly and sometimes never.
The young woman who came to see me wanted her “old life” back. After dealing with mysterious symptoms for a very long time, when she was told surgery was the recommended treatment, she finally had hope. And following the surgery, she was devastated for a while. It was my job to tell her that no amount of brilliant surgery could give her back the years lost. The harsh reality was that her life was permanently changed through her experiences with her medical illness, through her experiences with neurosurgery, through her experiences with those around her (family, friends, co-workers, etc.), and their reactions to her life and personality changes. I further explained that although she could not regain the life she longed for, this did not mean she could not have a good, healthy quality of life going forward. It took her time to get the medical diagnosis, time for the medical tests, time in the hospital due to complications following surgery, time for her body to heal, and time for her to heal her mental state and her relationships with those around her. Having a tumor in your head is a major, life-altering event, but life can go on and move forward.
I’ve encountered several post-surgery pituitary patients who report similar experiences of intense sadness and confusion about what to expect after what they had built up to be “the answer.” From what I have seen, most surgeons do a good job explaining the medical procedures and post-operative care. But little is discussed about the psychological adjustments immediately following surgery or even long after. And, it is extremely important to know that not even surgeons with immense experience can predict everything following their work since each patient is unique. Every patient goes into surgery with a unique medical picture as well as life events, personal skills, and attributes that can affect short- and long-term outcomes.
Now, more than a year after her surgery, this young woman has made peace with the reality of her “new” life. I have found that it takes a full year post-surgery for the body’s hormone levels to stabilize and the physical body to heal. During the first year, many patients become scared the surgery “didn’t work” but don’t realize just how much time it takes for the body to establish a “new normal.” And, since patients often haven’t had a “normal” for months to years, even before surgery, they may wish their twenty-something self would return, which is a fantasy for most everyone. This particular young woman I saw needed to grieve the life she thought, imagined she’d have, then slowly, with help, develop a new plan for her life. Relationships also needed to be healed and sometimes re-built, as she had let anger/rage erupt during times of hormonal instability. She needed to learn that she had to take better care of herself and listen to her body. She had to teach herself when to notice that she needed to rest and be calm.
Many patients learn for various reasons to ignore physical and emotional symptoms before surgery, but after, it becomes quite important to tune into the body’s emotional awareness. She joined a pituitary/endocrine disorders support group to be able to talk with those who actually know what life is REALLY like for patients. Listening to others’ experiences and sharing one’s own can be tremendously helpful for many. Therapy helped her learn to listen to herself and learn ways to communicate with her doctors and others more clearly, and, most importantly, respect that inner voice that would help guide her on her continued life journey.
Pituitary surgery is not medically necessary for all and must be carefully discussed with highly specialized pituitary specialists. For those for whom this is the recommended medical pathway, it is important to know that surgery is but one part of a long course of treatment. Pituitary surgery might remove or partially remove a tumor, but the medical and mental health care must continue lifelong after that. The patient is a part of the care by learning as much before surgery about what to expect but then knowing they will need many coping skills to help adjust to their new life moving forward. There is life after pituitary surgery, and it can be a good life, but there is an adjustment period and an adjustment to life’s expectations. Life with a pituitary disorder requires patience, persistence, perseverance, and hope that adjustments can be made and that life can be meaningful and fulfilling.
Linda M. Rio, M.A., LMFT, is a PWN contributor and author. Her latest book, “The Hormone Factor in Mental Health,” is available through Amazon.com and other major booksellers. We thank Linda Rio, Marriage and Family Therapist, for providing this critical information and being a valued contributor to our publication. Read Linda’s past articles on PWN and learn more at www.lindamrio.com.
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