November 10, 2018
My name is Paula Dinu and here is my story…..
I can recall the day after Thanksgiving in 2015 like it was yesterday. I had, my then 6-year-old son, and his friends playing at the house and I bent down to clean up all the toys they had scattered on the floor. As I started to lift my body up, my hearing on the left side went completely out and I heard ringing. It eventually came back after about 45 seconds, but then It started to happen more often. I naturally attributed this to the stresses in my life. I was hosting and getting ready for all of the holidays, working full time and trying to decide between a management position that two competing hospitals were offering me. Oh yes, I forgot to mention the irony of this whole story…. I am a Speech-language Pathologist-go figure! As I made my decision to stay at my hospital and take the Director position of Speech and Hearing and the Balance Center (irony) and finally the holidays started to end, I figured my sudden left sided hearing loss would disappear…. but no. So as the 2016 New Year drew closer, I found myself sitting at my laptop one night with a glass of red wine doing what most healthcare professionals do…googling my possible illnesses and diagnosing myself. I typed in “sudden unilateral hearing loss” and there it was “Acoustic Neuroma.” I laughed, shook my head in disbelief and thought I had drunk too much wine. Then I thought, “a benign brain tumor? There is no way I have this….” I googled it the same over and over with the same responses and there it was again, “Acoustic Neuroma!” How could I have one of these? I learned about these in my graduate studies for Speech-language Pathology when I had to take an audiology course and I have seen patients before who had suffered through one and were having follow up with the Neuro-otologist at our Balance center, but, “Me?” This could not be. So, I kept my mouth shut and went on with my days until February of 2016. One of my colleagues, a Laryngologist who is the medical director for our swallow and voice institute, saw me off balance and he asked if I was alright and I answered in my normal sarcastic way, “I don’t know especially with this sudden unilateral hearing loss that I’ve had since November.” At that moment he commanded me to take an audiology test and there it was! Apparently, I had the classic audiogram that you would see on someone who had an acoustic neuroma. The audiologist and medical director looked at me in disbelief and next I was summoned to have an MRI immediately. I told them, “don’t worry it cannot be an acoustic neuroma…the percentage of people with those are so small.” On February 6, 2018, another colleague of mine, a radiologist, sat me down and proceeded to show me my acoustic neuroma. There it was…a left vestibular schwannoma or AN, as most of us know from our community of fellow ANers. I met with another colleague of mine who was the medical director of hyperbarics and whose opinion I seek out often and I asked him, “what do I do?” He replied, send your information ASAP to the House Clinic in Los Angeles, California. I looked at him like he was mental. My response was, why would I do that when I live in New York and we have some of the best doctors in the world right here? He answered, “you asked me what to do and this is where my family would go if they had a tumor.” He in fact did have a family member who also had an AN removed and they had also travelled from Miami, Florida all the way to LA. We researched the House clinic and learned about the history of the center. They clearly were the pioneers of this type of surgery, leaders in the research world and were known worldwide for successful results. As I read testimonials, I saw most were from other countries or states outside of California. I sent all of my information over to the House Clinic that day. Not even 48 hours later did I receive a call from a staff member of the House Clinic requesting to set up a time for a Dr. Eric P. Wilkinson to call me later, after he finished seeing patients. I had to coordinate a time that worked with our 3-hour time difference. I came home from work and waited patiently. The call came at 8:30pm (5:30pm in LA) and again I was told I had a “relatively small AN” and what my options were, including a middle fossa approach surgery. I remember Dr. Wilkinson seeming so personable, explanatory and intelligent. I was comfortable immediately but told I should have a follow up MRI in 6 months to see if the tumor has grown and to just watch the tumor for now. By the third MRI on 11/08/2017, the tumor I came to know as “my friend living in my head,” had grown and now the surgery discussion was presented more strongly by Dr. Wilkinson. I remained in disbelief and did a fourth MRI on 02/06/2018 and was now faced with the options of doing the middle fossa approach surgery while the tumor was still small, and I was on the younger side (44 years of age). Dr. Wilkinson always took the time to explain the results of the MRI, the status of the tumor, the types of approaches/best approach, what the surgery would entail and assured me that he and his team would take excellent care of me. Of course, I continued to procrastinate a little more and I did also have other consults at other reputable medical facilities. Yet, although never meeting Dr. Wilkinson in person, I still made my decision to trust him with my life and have the surgery across the country, on the opposite coast line, with Dr’s. Wilkinson and Dr. Lekovic, the neurosurgeon (again I had never met him either). When I decided to set the date for the surgery, the team at the House Clinic responded with care, support and compassion immediately. I first spoke with Laurel Arranaga and she helped with setting up the surgery date, completing any medical leave paperwork either my husband or I needed and information about the staff including, Roya Mashayekh (the House clinic concierge) and Alyssa Gonzalez, the medical assistant for Dr. Wilkinson. From the moment I spoke with Roya, she made me feel like I was the most important person in the world and I felt sincerity, warmth and compassion. She would listen to my questions and concerns and answer them as best she could or find a way to get them answered for me. No matter how many times I emailed Roya, she would answer immediately. Roya helped my family and I get lodging at Seton Hall which was closely situated to the hospital and quite economical. The date was set…it was July 18, 2018 and the plane tickets and medical leave from work were finalized. The only thing left was to finally meet the people behind helping to orchestrate such a major life event and put faces to the names and voices.
My family and I flew to LA July 13 so we could see and experience LA a little before I went under the knife. We visited some attraction sites like Hollywood Boulevard, Rodeo drive, SUR restaurant and the Santa Monica Pier. July 16 was the day for pre-op testing and to finally meet these amazing people. First, I met Alyssa Gonzalez who greeted my family and I with a big smile and I apologized to her for all of the “urgent email requests.” She was as warm and friendly as I imagined her. Next, I met the man, “Dr. Wilkinson, the fellow working with the team, Dr. Anne Maxwell, and Roya! My eyes filled with tears and I was completely overwhelmed with emotion. It was a surreal experience to finally meet the people I had spoken to so many times either through the phone or via email…these were the people I trusted completely with my life. I was compelled to get hugs and they graciously obliged. It felt like a long-lost family I was finally meeting. Again, I knew this was the right decision and choice to have my surgery with this team.
The day of the surgery came and I was so nervous and anxious, but felt at ease once I saw Dr.’s Wilkinson, Lekovic and Maxwell. Dr. Maxwell and I had a secret pact to try to preserve my hair as best they could and I trusted her. She too was a woman with long blonde hair like me and I just knew she understood how important my hair was to me and my identity. I kissed my son, husband and best friend and told them I would, “see them later.” The surgery was supposed to be up to 11 hours long and I was out in almost 7. When I woke up in the ICU at St. Vincent’s Hospital, Dr.’s Wilkinson, Lekovic and Maxwell, an amazing team of nurses, Roya and my family were there. I was asked to move my face in all different positions and I had complete movement. The team was happy and so was I. I checked my hair and it was pretty much all there with the exception of a small trace line that was used to make the incision. Once the bandages came off, you couldn’t even tell I had brain surgery. The following day, however, I did have swelling and it contributed to left sided facial paresis. I found it quite amazing that although I had an intracranial surgery, I never had any headaches, but my goodness did I suffer from nausea. The nausea was the worst symptom as it was unpredictable and happened with any head or body movement. I couldn’t watch TV, or look at my phone, eat or drink for about 10 days following the surgery. I would cringe when I saw a Physical Therapist enter the room and try desperately to get out of doing any therapy. We also started to realize that I had permanently lost my hearing on the left side. I was in the ICU for about 6 days and then transferred to the regular unit for 4 more days until my discharge. I was checked on every day by Dr. Maxwell and she even removed my stitches on the 6th day. Dr. Maxwell would always visit me early in the morning and I looked so forward to her friendly smile and great conversations. I was so thankful to her for keeping her promise of preserving my hair the best she could, and she absolutely did. There was never a day that Roya did not come to see me and check on my status or be a support for my family. Dr.’s Wilkinson and Lekovic were also very attentive and present throughout my hospitalization. I was so impressed with how well I was treated and the care I received.
My family and I stayed at Seton Hall for the remainder of the stay until my post op on 7/29. I had the pleasure of meeting other future and past patients of the House clinic. I was awed to see people from Florida and Oregon and hear their stories. It was comforting to know we all trusted the right people with our lives. As I walked out of the House clinic, after saying my goodbyes to Dr. Wilkinson, Dr. Lekovic and other staff, I knew I made the right decision and that they would all be engrained in my heart forever as some of the most special people I would ever get the opportunity to meet.
This has been a tough recovery to say the least. I have been home in New York since August 1 and attending vestibular therapy with a physical therapist 2-3x a week for an hour each session, following a strict regimen of home exercises to be done up to 4x daily and seeing a neuro-otologist and ophthalmologist occasionally. I went off of pain meds almost a week after I was home. My facial weakness is hardly noticeable at this point, almost four months later. I started driving in mid October and I will be going back to work full-time on November 13th. I am concerned about my busy days, my fatigue that tends to set in and my ability to multitask, but I am confident, proud and eager to be blessed to return to work and be myself again. I truly feel that if I had gone somewhere else for this surgery, I may not have been given all my life back. Coming from a health care environment, I am so proud to say to anyone considering the House Clinic, it is the right choice to trust in the pioneers of this surgery. The House clinic is a well-oiled machine that works to make the patient experience, patient care, family support and medical care, the best it can possibly be. I would fly 7 hours again all over to be in the care and company of this fine staff. My gratitude and appreciation are at a loss of words and that is a tough thing for a Speech-language Pathologist to say.
My heart swells when I think of all of you and I can never thank you enough.
Much love, Paula Dinu and