I have been asked to write a summary of my experience that started with the discovery of a benign tumor in my ear canal and ended with it’s successful removal by the House Ear Clinic physicians, Dr. William Slattery and Dr. Gregory Lekovic.
In August 2017, an MRI, taken after I experienced a rapid hearing loss in my right ear, revealed a large Acoustic Neuroma (also referred to as a Vestibular Schwannoma) in my right ear canal. My wife and I had no knowledge of this type of benign tumor, so this finding led us to considerable research about these tumors, their repercussions and the treatments available to remove them.
How did we find the House Ear Clinic?
We live in a Maryland suburb of Washington DC, and my local ENT physician, after confirmation of the tumor by the MRI study, referred me to a neurotologist from Johns Hopkins Medicine in Baltimore, MD (about a one hour drive from our home). Two weeks after my first consult, we had an appointment with the Hopkins’ neurosurgeon who works with the neurotologist in surgeries to remove these tumors.
At the same time, we began researching the literature and contacting everyone we could think of that might be able to give us information or advice about treatment for this type of tumor. Several friends referred us to people they knew who had been through this surgery, and they were very open about their experience and gave us good, tangible information. In addition, because my pre-retirement profession was in medical group management and as I had been professionally involved in several national organizations, I had access to a large resource of valuable contacts with knowledge of medical care and practitioners.
Most people we contacted felt Johns Hopkins was a good choice based of its experience and reputation, but the House Ear Clinic was often mentioned both by the people we contacted and in articles and other research we found on Acoustic Neuroma surgery.
How did we decide to have my operation at the House Clinic?
Johns Hopkins had a number of strikes against them from the start: The fact that they were our first surgical consult probably put them at a disadvantage. Their job was to present the facts and they did this with a frankness that was stark. At issue was the size of my tumor (28X29mm) which precluded the treatment options of radiosurgery or just waiting to see the rate of growth (which is usually very slow for these tumors). The surgery and recovery were going to be daunting, and the outcomes, though positive in the sense of removing the tumor and surviving, did carry significant and potentially long lasting side effects. We had read articles about these post-op complications, but the Hopkins surgeons brought them into sharp focus. Another issue for us was the distance from our home to Hopkins in Baltimore. My wife would have a congested one hour drive each way into downtown Baltimore to reach the hospital. This would be doable but stressful. The alternative was for her to stay overnights near the hospital in Baltimore. And finally, we found the Johns Hopkins campus and facility itself rather impersonal and off-putting.
Shortly after our visit to Hopkins, an Acoustic Neuroma patient (referred to us by a friend) advised us to call a local physical therapist specializing in facial muscle issues. This therapist works with a large number of Acoustic Neuroma patients (since facial muscle palsy (temporary or permanent), can be one of the side effects of this surgery). When we told her the Hopkins surgeons said that, because of the tumor size, they would use the Retrosigmoid approach she expressed some concerns. Patients she treated who had had this surgical approach (Retrosigmoid) versus others tended to have more problems with headaches, both immediately post surgery and later on. She advised us to get the House Clinic’s opinion as she had also seen patients from the House Clinic and felt they had good results. She recommended that if House indicated to us that they would also use the “Retrosigmoid” approach then we should not travel so far from home for the surgery as Hopkins does quality work. But if House indicated that they would use another approach then we should travel to Los Angeles and go with the House Clinic physicians.
In addition, an audiologist in California who was recommended to me through professional contacts, also spoke highly of the House Clinic. He indicated that in addition to treating numerous of their post surgical patients he also referred his patients with Acoustic Neuromas there for surgery, He was impressed with the results of the House Clinic surgery team and gave me the name of a physician at the House Clinic, Dr. Slattery, to contact about my situation.
Also, another important factor in our consideration was that I have a daughter who lives in Los Angeles, 10 minutes driving time from both House and St. Vincent Hospital. This made it much less intimidating to make the cross country trip.
We set up phone consultations with the House neurotologist (Dr. Slattery) as well as the neurosurgeon (Dr. Lekovic) who would also be on the surgical team. We sent a copy of my MRI and recent medical records for the physicians to review before our conversations. In both these calls the House physicians were empathetic and positive in their comments, while not avoiding discussion of potential complications from the surgery. They explained the risks of the surgery in the context of citing national statistics and the results of their own surgeries, and stressed that an important mission for them was to avoid or minimize post-surgical issues. They also indicated that House routinely uses the ‘Translabyrinthine’ approach for large tumors, unlike Hopkins where the ‘Retrosigmoid” approach is typically used. They said the ‘Translab’ approach would not require retraction of the brain to access the large tumor, as the ‘Retro’ approach would and that the approach also reduces the risk of complications, including damage to the facial nerve and post-op head aches. A negative of this ‘Translab’ approach is that hearing in the affected ear is always lost, while for smaller tumors where ‘Retro’ approach may be recommended any remaining hearing may be saved. Due to the size of my tumor, my affected ear hearing had already been lost, so we did not anticipate saving that ear’s hearing with either approach.
After my House Clinic consultations, my wife and I felt that we would have the best experience working with these doctors as they seemed much more accessible and interested in addressing our concerns. In our discussions, Drs Slattery and Lekovic indicated that many of their patients came from outside the Los Angeles area so they and their support staff were comfortable working with patients from outside their service area. They also assured us that there were no risks from airline flights i.e. flying.
So we called House Clinic to schedule our surgery date and began making plans to go the Los Angeles.
The Surgical Experience:
During our first visit to the Clinic, we met Dr. William Slattery and Dr. Gregory Lekovic, the House Clinic fellows (physicians in specialty training) that worked with them, and the Internal Medicine doctor, Dr. Michael Stefan, who would care for me in the hospital. We felt that all of the physicians we met with were in no rush and were very interested in insuring that any questions we had were answered – and we had plenty of them. When I apologized to one of the physicians for our large number of questions, his response reflected how we felt when he said: “No question you have is unimportant in this conversation.” We also met with several House Clinic staff to deal with paper work and any questions on the business side we had. Once again, these conversations were unrushed and informative, and the staff projected the same approach to fully inform us and allay any of our concerns.
Two days later, I entered the hospital for a nine hour surgery. Immediately after the surgery I was taken to the ICU for recovery, where the hospital staff and House clinic employees responsible for this hospital unit gave me great care and the physicians visited regularly. On my second day post-op, I was transferred to the hospital floor, where the House physicians continued to spend time with us each day without fail, answering any questions we had and keeping us updated on test results, etc.
As I had minimal post operative issues relating to my ear, I was ready to be discharged five days after surgery, However, I had complications with my prostate which led to a TURP procedure and an additional week in the hospital. House coordinated bringing in a Urologist and were involved and helpful in all our decisions for treating this unexpected problem.
Despite my additional procedure (prostate), both my wife and I were very pleased with the experience and the outcome of my surgery. It is a scary thing to have a ‘brain tumor’, and the House physicians and staff proved to be skilled in caring for me and committed to addressing our concerns. From the minute my family and I entered the sphere of the House physicians and support staff, our concerns and inputs were acknowledged, responded to and welcomed. Their clear, concise and affirmative explanations made our decisions better and prepared us for most situations that we met.
The inclusion of my family (wife and daughter) in all decisions and explanations – from the initial phone consultations to the pre-op explanations by the physicians and staff, the surgery day phone access to the operating room to monitor my progress, and my whole hospital stay- made the experience much less stressful than it might have been for all of us. We as a family were allowed to collectively anticipate and deal with the long surgery and any changes in my condition throughout my stay. We felt we were of upmost importance to the House team. Their support allowed me to be a receptive patient and for my family to have the best support system I could ask for.
The House Clinic also works well with St. Vincent Hospital to insure not only the excellence of care given, but the sense that the best is being done for the patient and their family. The hospital’s introduction of an ombudsman, both personable and professional, to work exclusively with House patients underscores their commitment to direct and sustained communication. The team of nurses in the St. Vincent hospital Doheny ICU unit (an ICU unit set aside for House clinic patients) and the hospital floor reflects the joint effort to provide not only the best care, but the best experience for the patient and family.
Throughout, we were impressed with how comfortably the House physicians and support staff made it for us being so far from home for my care. Our experience truly speaks well for the organization in its efforts to meet patients’ and their family’s needs, These efforts are enhanced by their skills and compassion as surgeons and care givers.
March 5, 2018