After four years of suffering and multiple misdiagnosis, medical mystery is solved.
Emma’s pain began four years ago, with a sudden, sharp pain in her neck. By the time she contacted Patient Navigator, she had spent many thousands of dollars seeking a diagnosis for the unrelenting pain and troubling symptoms that had worsened steadily over time. She was desperate, could no longer work and despaired that any answer would be found. Our Medical Director conducted an extensive, in-depth review of her medical records from birth to the present. She investigated every clinical explanation that other doctors had offered. She wrote detailed clinical summaries for use with medical teams. And through the meticulous work of review, research and exploration, Patient Navigator presented Emma with new diagnostic possibilities to present to her medical team. We also investigated possible treatment plans and options. Emma was grateful that perhaps, after years of anguish and suffering, she probably had an answer and was hopeful about treatment.
Insurance appeal victory finally allows teenager to get help.
A teenage girl was suffering from a debilitating, but little-known, mental illness. Despite her parents’ persistent efforts to obtain the specialized services she needed following several emergency hospitalizations and treatment attempts, the insurance company refused to allow treatment in the one hospital equipped to help. After futile efforts through the insurance company’s internal appeal process, the family turned to Patient Navigator. We immediately prepared a detailed, documented case and appeal submitted to the Insurance Commission and Ombudsman of that state. The appeal was again denied, but Patient Navigator lodged another level of appeal. The insurance company finally agreed to cover the hospitalization that would save this teenager. She has returned to school after missing an entire year while the insurance company refused to help her. Her parents said, “Words cannot express how fortunate we are that we hired Patient Navigator to advocate on our behalf in dealing with a denial of medical service for our daughter. They were well organized, professional, familiar with medical insurance policies and guidelines, and dedicated in providing the best advice and information possible to ensure a successful outcome. They showed compassion in their work and for our family, they truly cared. Our daughter is being treated at the right hospital now, and she wouldn’t be if not for Patient Navigator’s help.”
Joan’s problems got worse after surgery.
We were contacted by a patient who sustained a complication from a neurological surgery. Patient Navigator’s Medical Director consulted various specialists on her behalf by phone and email after the patient’s doctors refused to listen to her concerns. We directed her to the specialists who would be able to help her overcome this life-changing complication. Our list of questions for the consulting physicians empowered Joan to get the answers she needed. We worked with her through a grueling set of appointments at the Mayo Clinic to help coordinate the tests, questions and results. The medical mentoring we provided helped Joan to more fully understand what had occurred as a result of the surgery. Joan was grateful for the emotional support we provided during a frightening time.
Helping our client not to give up.
Richard had been suffering from intense nerve pain for several years and had pursued futile treatments, been misdiagnosed and been shrugged off by his doctors. He had found a new diagnostic possibility and sought out the most renowned doctor for the issue. He had to fly across the country to see him, and once there, had to try to manage the doctor merry-go-round. We stayed in constant touch with Richard to coach him on strategies for dealing with the multiple doctors and for self-advocacy. Richard was grateful for our practical advice and moral support at a time when he was almost ready to give up on ever finding help.
A tragic accident leaves young man incapacitated.
An athletic, vigorous 49-year old was left in a deep coma after being hit on his bicycle by a distracted driver. His out-of-state parents arrived and immediately needed help navigating his health insurance, his Federal employee benefits, disability and, most importantly, a facility that offered coma stimulation therapy. Patient Navigator researched the East Coast, worked with social workers at his hospital and at the receiving facility to airlift him, obtain insurance coverage and to help the parents begin to chart out a course for long-term recovery. Our experience with the Federal personnel, healthcare and disability process was invaluable in breaking through the bureaucracy.
Help for a young victim of medical error.
When a 4-year old suffered cardiac arrest due to medication errors while hospitalized for another condition, the child’s parents called Patient Navigator for help. The consequences of this medical error were severe. Patient Navigator served as facilitator during a difficult meeting with the treating physicians and hospital officials, accompanied the parents as they began malpractice discussions with an attorney, and arranged for brain injury organizations to begin providing services for the child at home.
Medical research on rare condition opens new doors.
Bonnie came to Patient Navigator with a daughter living with a common psychiatric disorder and a very rare syndrome (fewer than 400 in the world) that manifests itself with congenital problems in multiple body systems. As it turns out, both the syndrome and disorder are linked; Patient Navigator identified experts who have worked with similar patients. We connected Bonnie with them, as well as with the two physicians in Asia who first described the rare syndrome in publication. Before she came to us, Bonnie had felt overwhelmed with the volume of information on the internet and wasn’t sure how to distinguish the good from the bad. We identified what leads were worth pursuing, which were not credible, and wrote a comprehensive report backing our findings with published, peer-reviewed scientific data.
After 10 years of suffering, hope for this patient.
Frank called Patient Navigator for assistance in researching the underlying cause of his son’s debilitating autoimmune neuropathic condition which had gone without successful treatment for over 10 years. Patient Navigator carefully reviewed medical records, prepared a medical summary and generated a differential diagnosis. In conducting a literature review on the possible causes of the patient’s symptoms, Patient Navigator also reached out to top specialists who had published articles on particular diagnoses being considered. Our researcher was fortunate to receive responses from these specialists who were forthcoming in sharing their professional insight and even making suggestions as to other diagnostic possibilities. Finally, Patient Navigator sought out local specialists with whom the family could consult. In this case, a specialist who was on the medical advisory board of a neuropathic pain support group was selected.’
Implementing a roadmap when the doctors don’t help.
Frank was diagnosed with multiple myeloma, but his oncologist did very little to explain the disease or set up support services. Our client and his wife were overwhelmed by the sudden onslaught of tests, doctors, medical bills and physical disabilities; they received virtually no guidance or help from the medical team. When Patient Navigator became involved, we explained what home health services were available and arranged for their delivery, set up the client’s online Medicare account, helped to organize his medications and explained how his treatments would be covered. Once we set things up to operate smoothly, the couple felt reassured and equipped to move forward with treatment.
A peer-to-peer phone call gets test approved.
The client had been sick and home-bound for ten years. He was reluctant to seek treatment because he felt that doctors had failed him over the years. The one physician he still saw prescribed a PET scan to begin a new diagnostic effort. Not surprisingly, the insurance company denied this vital test. The physician was not willing to try to appeal this decision. Our own Dr. Zorrilla, who had been working with the family, intervened with insurance company in a peer-to-peer call with the medical director. After her thorough clinical summary and explanations, the medical director promptly approved the test. The family and patient were immensely grateful.
A worried wife finds help for her husband.
Margaret’s husband had been in and out of the hospital with various serious medical problems. But she was having trouble getting specialist appointments, understanding the situation, communicating with doctors and advocating for her husband. Margaret called on Dr. Zorrilla when the situation was very worrisome. Dr. Zorrilla quickly wrote clinical summaries, found the appropriate specialists, secured early appointments and prepared the couple with a list of questions for their visit. “Dr. Zorrilla, you are great. I want to let you know that I told everyone I saw that we would never have made it through this without your guidance.”
Turning to Patient Navigator when the doctor doesn’t explain.
Mary had her thyroid removed as treatment for papillary thyroid cancer, and her physician suggested she undergo radioiodine treatment. She also was told she was “BRAF positive,” but unfortunately was not told what that meant. Patient Navigator identified the standard of care for patients who had been down a similar path and compared that to her planned treatment; explained what “BRAF positive” meant and what it meant for her; identified a leading endocrinologist in her state that she could see for a second opinion, after consulting with other top physicians who practice in the field; answered her many specific questions regarding the safety of those living with her after radioiodine treatment.
Mary’s daughter was getting worse and the doctors were perplexed.
Mary came to Patient Navigator for help when her 15-year old daughter’s doctors could not determine what was causing her terrible, inexplicable medical problems. Patient Navigator’s Dr. Zorrilla reviewed all the records, tests and lab results, took a detailed history and wrote a medical summary. She got immediate appointments with prominent specialists at a major hospital. Those doctors used Dr. Zorrilla’s medical summaries, in depth clinical research and testing recommendations to take a new approach to diagnosing Mary’s daughter.“I’m sure you’ve heard countless times about the amazing service Dr. Zorrilla has provided. I have appreciated her wisdom, medical expertise, professional ability, tireless efforts and warm compassion.”
Charlotte’s friend was in trouble.
Charlotte was concerned about the health and well-being of a friend in another state who suffered from severe health problems which had led to daunting financial obstacles. Charlotte asked Patient Navigator to find medical and financial resources in her friend’s state that could provide immediate assistance. We researched lower cost health insurance options, and determined that Charlotte’s friend would likely qualify for Medicaid under her state’s requirements. Patient Navigator then found a local charity that would walk the friend through the application process, and provide other support, including food and utility assistance. Patient Navigator also provided resources for prescription drug assistance. Taken together, these resources together could reduce the family’s expenses by hundreds of dollars per month.“My friend is suffering physically and financially, and they helped us find resources that may help her.”
Jane’s Sister Needed New Doctors for Her Complicated Disease
Jane’s adult sister suffered from multiple and severe mental health and neurological problems. She was institutionalized but Jane wanted to explore new therapies to help her sister. Patient Navigator researched top clinicians and researchers in the relevant areas and secured early appointments for the patient. The new medical team took an entirely new look at her case. Jane is gratified that her sister now has new options and will participate in a novel therapy which is expected to help greatly.“If you are struggling with a serious illness, call Patient Navigator. This will be the only call you need to make. Elisabeth is a tireless professional who can navigate very rocky situations.”
Stephanie was worried about her father’s doctor.
Stephanie’s father has a painful chronic back condition that required surgery, but the family was unsure that they had the best doctor for the job. They asked Patient Navigator to find surgeons who specialized in the specific type of procedure Dad needed and who also accepted new Medicare patients. Patient Navigator reviewed two Board Certified specialists in their immediate area, provided a research summary of the surgical procedure itself, and offered detailed information on post-surgical recovery. Stephanie’s father had the surgery with confidence and benefited from a smooth recovery.
Christine’s devastating rare disease required a team of 13 different doctors.
Christine grew frustrated and exhausted trying to manage this team and was unhappy with how her doctors treated her. Patient Navigator wrote a summary of Christine’s diagnosis, symptoms and medications to provide to doctors prior to visits. This saved Christine from having to tell her story repeatedly, which had always left her drained. Patient Navigator even found her new infectious disease and pain management doctors who were a much better fit. The improvement in Christine’s pain levels was a major turning point in managing her disease. “We have had continual struggles within the healthcare system that I don’t believe we could have managed without Elisabeth’s assistance. She continues to help guide us through the healthcare maze with caring compassion and the knowledge required to make the right decisions for the best possible outcome.”
Eric was very worried about his 58-year old father in Washington D.C.
Dad began to experience sudden and severe deterioration of his physical and mental health early in 2010, including dramatic cognitive changes. Debilitating depression and anxiety paralyzed him even as other medical problems emerged. Eric contacted Patient Navigator in August 2010 for help. We got to work building a medical team including an internist, neurologist, neuropsychologist, endocrinologist, psychiatrist, sedation dentist and podiatrist. Throughout the process, we wrote concise medical summaries that the team appreciated. Patient Navigator accompanied Eric’s dad to 29 medical appointments and tests, wrote detailed summaries for Eric, made sure the doctors communicated, deciphered insurance issues, filed appeals, interviewed daytime companions and worked with the disability claims adjuster. “You have been a real life saver over these many months. We appreciate your hard work and dedication to our family.”
Rachel had given up hope that any doctor would diagnose her and was ready to resign herself to a life of pain and sickness.
Her complicated and worsening physical symptoms and multiple hospitalizations in the past year did not fit into any of her doctors’ boxes; instead, one specialist sent her to another and another. None of them offered a diagnosis, treatment or hope. Patient Navigator is now working with Rachel to seek treatment at the National Institutes of Health in Washington, D.C. Rachel has renewed hope and told us “thank you for being one of my life preservers.”
Over just two weeks, Howard’s mother suddenly experienced significant cognitive deterioration.
Her doctor insisted it was Alzheimer’s disease, but Howard believed such rapid deterioration couldn’t be Alzheimer’s. Patient Navigator contacted a geriatric specialist, who examined Howard’s mother the following business day. The specialist accurately diagnosed and treated a systemic infection — Howard’s mother did not have Alzheimer’s disease!
Joan had been misdiagnosed for 14 months. Doctors routinely dismissed her symptoms, leaving her anxious and intimidated.
Patient Navigator helped her find a new team of doctors by researching each doctor’s approach to dealing with patients. One new doctor Patient Navigator suggested to help Joan manage her terrible pain made a dramatic difference; Joan finally felt heard, understood and cared for. “Finding the right doctor has greatly improved the quality of my life.”
Ruth called Patient Navigator for help with her 34-year old daughter’s back pain.
Over the past 23 years, her daughter had been misdiagnosed, suffered a botched surgery, and now was worse after a fall. Patty needed help finding new doctors who could take a fresh look. Patient Navigator investigated doctors at the forefront of research on her daughter’s type of back problems. This led to an excellent second opinion from a new doctor who can offer new treatment options. As importantly, Ruth’s daughter has renewed hope that her pain might improve. Her mother told us that“WOW. You certainly get results! Finally, my daughter feels understood.”
Nancy lived alone, in a remote, rural area.
She had no relatives nearby to help her as she went through aggressive cancer treatment. Patient Navigator identified services to help transport her between her home and the city for treatment, and to care for her pets when she was unable to do so.
After her treating oncologist dismissed her request for vitamin supplements.
Patient Navigator helped Debbie, who has lung cancer, find a doctor who would work with her to implement a more robust supplemental vitamin and nutrition therapy program.
Louisa was fighting her second bout of a very debilitating cancer.
Her sister called Patient Navigator to help Louisa who lived with her elderly mother, a two-time cancer survivor herself. Patient Navigator suggested in-home care solutions available in her area covered by insurance, as well as sources for affordable medical and personal care supplies. After Louisa passed away, Patient Navigator supported her mother in processing paperwork and closing bank and credit accounts.
Doris was desperately searching for residential facilities for her mentally challenged adult son.
Due to his relatively high level of function, he wasn’t eligible for many publicly funded programs, but Patient Navigator’s research revealed several facilities within a two-hour of Doris’s home, as well as both private and public in-home support resources, that would help the family.
Elizabeth needed help at home while recovering from her cancer treatment.
Patient Navigator arranged for a visiting nurse, cleaning service and help with food preparation for the family.