Tyler Martin Schmidt, DO (right)
Neurosurgical Resident at University of Rochester Medical Center
Rochester, NY
Kristopher T. Kimmell, MD (left)
Neurosurgeon at North Kansas City Hospital/Meritas Health
North Kansas City, MO
Tim Smith was well acquainted with the medical field. His wife was
a newborn intensive care unit (NICU) nurse, and his daughter works as an emergency
room physician. He had been a firefighter and was no stranger to injury and
trauma. While accustomed to hospitals, first responders and medical providers,
Tim’s personal journey on the other side of emergent care began on Nov. 20,
2017, and forever changed his perception of health, healing and daily life.
On that Friday afternoon, Tim had been working in his garage. His wife Ann called to check in and received no response. Upon her arrival home, she found Tim slumped in a chair, lethargic and covered in vomit. Ann was a seasoned nurse and quickly checked his pulse while calling 911. He was swiftly transported to the emergency department, intubated and sent to the CT scanner. Tarun Bhalla, MD, PhD, a cerebrovascular neurosurgeon at the University of Rochester Medical Center informed them that Tim had a ruptured Spetzler-Martin Grade 3 cerebellar arteriovenous malformation with acute hydrocephalus. At this time, Tim had a Glasgow Coma Scale (GCS) score of three. His wife and daughter were well aware of the severity of this diagnosis, and Dr. Bhalla explained that it would require emergency surgery to place an external ventricular drain and decompress the brainstem by relieving the mass effect from the hemorrhage. It was emphasized that his condition was serious and the challenges associated with recovery from this type of injury and surgery were significant.
After surgery, Ann recounts the incredible joy she and her family shared as Tim opened his eyes and followed commands in the ICU. She and her daughter Emily understood that this seemingly simple act is actually an incredibly complex collaboration between multiple areas of the brain, and signaled to them and his care team that Tim was ready for the long road to recovery. Over the next several weeks, he worked tirelessly with physical and occupational therapists, spending Thanksgiving, Christmas and New Year’s away from his family in order to regain functional strength. With the support of his family, Dr. Bhalla and the neurosurgical/neuro-medicine ICU team as well as the physical medicine and rehabilitation team, Tim was discharged from the hospital on Jan. 17, 2018.
The Next Phase
Like many patients with ruptured arteriovenous malformations (AVMs), the primary goal is control of the hemorrhage and decompression of the surrounding brain, especially in the posterior fossa as a lifesaving event. Subsequent options for the remaining nidus include embolization, radiosurgery, surgical intervention, or a combination. Tim’s AVM required multiple stages of embolization, the first of which occurred during his initial hospital stay in December. Upon discharge, he had improved significantly, and over the next several months recovered to his baseline, all while undergoing sequential staged embolizations without deficit. These procedures served to slowly chip away at the feeding vessels to his complex AVM. Tim credits his family and prayer to his successful recovery during this period and felt that some of the burdens of acute illness were lifted with their assistance and support.
Tim was scheduled to have the last of the serial embolizations with resection in September of 2018. While the procedure was successful in removing the AVM, he was making good progress when in January of 2019 he developed gait alteration and significant imbalance secondary to the unfortunate development of nonobstructive hydrocephalus that completely took the wind out of his sails. He subsequently underwent a ventriculoperitoneal shunt procedure, and in April of 2019 is still struggling to return to baseline and regain normal balance although he is starting to feel progress. This is a frustrating reality that he and his family were not anticipating at the time of his initial injury and sequential procedures. In the initial acute phase of Tim’s AVM rupture, he and his family were focused on survival. This overwhelming fight or flight response did not allow at the time for full consideration of the chronic aspects of his disease, and the struggles that they would face throughout Tim’s treatment course and recovery. In particular, although he safely made it through the initial hemorrhage and recovery, he was still harboring a complex AVM with the risk of neurologic decline still very possible through the necessary treatment stages ahead.
As neurosurgeons, particularly residents, it is sometimes
difficult to appreciate the ripple effect of cerebrovascular disease on
patients and their families. We often focus on the aspects of neurosurgery that
we can control, including inter-operative complications and immediate
post-operative healing. Doctors excel at communicating these details to
patients and family members, and part of this burden is to expound on the
long-term repercussions that come with neurovascular diseases and
interventions. After the acuity of surgery is managed, it is important to
listen closely to the feedback our patients have for us regarding recovery and how
neurosurgery and cerebrovascular injury impact their lives.
Insights from the Bedside
Tim and his family are very grateful to and satisfied with, the
care they received from Dr. Bhalla, Cindy
Zink PA-C and the neurosurgical team at the University of Rochester Medical
Center. He credits them with saving his life and understands the significance
of early and accurate intervention. While very appreciative, he emphasized a
few important things he has learned throughout surgery and recovery.
Specifically, Tim focused on communication. Often, surgical patients experience
some sort of neurologic deficit in the post-operative phase, many of which are
temporary. In the face of a deficit, it may seem that communicating primarily
with the family member or patient advocate is the most effective way to relay
critical information regarding surgical outcomes and recovery. Tim’s wife and
daughter were frequently at the bedside for these updates and acted as a proxy
for Tim during the acute phase of his AVM rupture and repair. He cited
frustration with his perception that he was not always in the immediate loop of
communication regarding his progress. It is important to ensure that the
patient is included in the plan of care, despite existing or perceived
neurological deficits to promote personal agency and involvement in recovery. In
particular, early morning rounds do not always suffice for the day ahead, and
as a result, cerebrovascular neurosurgical services have worked toward adopting
twice daily rounds to help close the communication loop between patients, their
caregivers, and the neurosurgical team.
Hand in hand with direct communication with the patient is the necessity
to reiterate as appropriate through every phase of treatment possible
complications, the severity of the injury, and potential chronicity of disease
with significant lasting deficits. Repetition of this information is critical,
particularly after the immediate catastrophic risks are mitigated as from a
patient perspective it is natural to reacclimate with a new perspective on life
after partial or complete recovery from an initial severe neurologic event. Compassionate
but honest conversations about neurological condition and hope for recovery are
integral parts in managing expectations of outcome for both the patient and
family as they face a life-changing event. Part of our job is recognizing the
frustration of navigating cerebrovascular disease treatments and recovery.
Identification and acknowledgment of their struggle forges a stronger bond
between physician and patient and allows us to communicate more effectively. A
final point to consider is the identification of proper resources to facilitate
recovery and coping within our health care systems and communities.
Understanding and offering the resources available for a patient’s particular
condition, whether it is a return to drive program, home PT/OT, or a support
group can be strikingly effective on improving quality of life for transitioning
patients and their families.
Tim’s ruptured AVM story provides an opportunity to not only
reflect on the pride we have for the neurosurgical care we give and its
profound impact on our patients’ lives but also to appreciate communication as
an integral aspect of the patient-centered care model. Cerebrovascular disease
and its difficult impact can be managed effectively with a focus on
whole-patient focused, comprehensive care, an idea that Tim Smith and his
family feel passionate about. We are grateful for their willingness to share
Tim’s experience as a learning opportunity, as well as a reminder that the
bravery of our patients and their families can never be understated.
Editor’s Note: We
encourage everyone to join the conversation online by using the hashtag
#VascularNeurosurgery.
