Hi All,
I’m happy to share the update that I had successful left side surgery one month ago (July 6th) with Dr. Liu in New Jersey! Dr. Liu, his team, and the staff at Cooperman Barnabas Hospital could not have been more phenomenal. I am so grateful for the excellent care they provided and for the support this forum has provided as well – I would not have found Dr. Liu without the forum!!
I had refrained from posting after my initial post because my mental health was extremely poor in May and June, before meeting Dr. Liu. I spent quite a bit of money and energy traveling to California (I met with two specialists at Stanford and with Dr. Osborne) and consulting with local doctors as well (Dr. Patel in Portland). I also sent my CTA scan to Dr. Nakaji who determined that I did not have jugular vein compression (quite a surprise given my CTA images and symptoms). I’m sharing the details of my journey with Dr. Liu below in case it’s useful for others who are struggling with the vES and hitting dead ends:
- I filled out Dr. Liu’s online form on May 17th and immediately received a call from his colleague, Emily on the 18th. She was extremely helpful, efficient, and kind and helped me to upload and share my CTA images through their portal.
- Next, I was put in contact with Aida, Dr. Liu’s nurse practitioner who works closely with him and ES patients. Aida was compassionate, knowledgeable, and highly communicative while working to schedule my consultation with Dr. Liu. It was very clear that Dr. Liu is a highly sought-after Neurosurgeon with a demanding case load – I cannot begin to imagine how busy he and his team are. Despite their heavy case load, Aida was able to work flexibly to schedule a virtual consultation with Dr. Liu as efficiently as possible. Before my virtual consultation, scheduled on June 18th, Aida took the time to speak to me on the phone for over 30 minutes – reassuring me that I was going to get the care I need, that she knows how debilitating ES can be, and that I would be in good hands moving forward.
- My virtual consultation with Dr. Liu on June 18th was immediately reassuring and helped me to begin to see a light at the end of the tunnel. He quickly pointed out my severe IJV compression on the left side and noted that I would be a good candidate for surgery. For such a renowned and well-regarded neurosurgeon, I found him to be extremely compassionate. He did not rush the appointment or talk down to me in any way. It was the combination of his superb skill set and his personality that made me feel that he would be the right surgeon for me. I also noticed that all of Dr. Liu’s colleagues, as well as the staff at Cooperman Barnabas speak very highly of Dr. Liu! Dr. Liu, the team at Neurosurgeons of New Jersey, and at Cooperman Barnabas are not only highly skilled, they are genuinely good people who care about giving ES patients the relief that they need!!
- My health insurance is through Cigna, and Dr. Liu was technically out-of-network for me. Kelly, the manager at Neurosurgeon’s of New Jersey reached out very quickly after I was determined to be a surgery candidate to reassure me that Dr. Liu performs his surgeries at Cooperman Barnabas which is in-network for Cigna and most major health insurance providers. She patiently explained to me that because of this, I would only be responsible for in-network out-of-pocket expenses. This was a HUGE relief and another indicator that I was making the right decision with Dr. Liu!!
- Aida and Dr. Liu were able to get me scheduled for surgery within a few weeks after my virtual consultation. Ashley, who is the pre-op nurse for both Dr. Chancellor and Dr. Liu was FANTASTIC. She helped me with all aspects of preparation for my procedures with Dr. Liu and Dr. Chancellor, including finding the best hotels close to the hospital as I was traveling from out of state. She regularly checked in with me prior to surgery, ensured all of my pre-op scans, blood tests, and clinic visits were completed, and helped with total coordination across Neurosurgeons of New Jersey and Cooperman Barnabas.
- I had an angiogram with Dr. Chancellor at Cooperman Barnabas on July 1st. Dr. Chancellor and her team were absolutely wonderful, she was highly knowledgeable and kind, and once again, made me feel as though I was in great hands. She was able to quickly diagnose my venous compression and establish the need for surgery, making navigation of my health insurance easier as well. Dr. Chancellor took the time to speak to my father, who traveled with me to New Jersey. I have a C1-C2 subluxation, and was feeling nervous about the C1 shave portion of surgery. Dr. Chancellor spoke to my father, told him that she and Dr. Liu were well aware of my C1 situation and they would ensure the best course of action for my surgery.
- Next, I had surgery with Dr. Liu on July 6th. Before surgery, Dr. Piroshka, the anesthesiologist who works with Dr. Liu during surgery called me to explain the anesthesia process and once again reassured me that I would be in good hands. Dr. Piroshka was so caring – she held my hand before and after surgery, was extremely detail oriented, and I can confirm that surgery felt like blinking my eyes!
- Dr. Liu performed successful surgery without any complications. He removed my left styloid close to the skull base, removed the transverse process of my C1 on the left side, removed the fascia trapping my jugular vein, and resected the posterior belly of my digastric muscle on the left side to achieve comprehensive, immediate decompression. In reading the operative report weeks later, is it very clear that Dr. Liu’s approach is cutting edge, unparalleled, and highly specialized to the needs of ES patients. As soon as I woke up from surgery, my brain fog, tinnitus, and headache were completely gone – I couldn’t believe it!! I was able to carry a coherent conversation with Dr. Liu immediately after surgery. He took the time to call my dad to let him know that the surgery went well and came to check on me in the hospital the night after surgery and called me after I was discharged. Once again, he spent a significant amount of time interacting with and observing me to ensure that I was doing well and healing properly.
- After surgery, I was continuously monitored by members of Dr. Liu’s team and the staff at Cooperman Barnabas – someone came to check on me every hour to ensure that my neurological functioning was normal!! A physical therapy team helped me to practice walking and other daily functions before I was discharged. I don’t think I could have received better care and I was genuinely amazed by the superb quality of care I received.
- I had my post-op appointment with Dr. Liu and Aida in person on July 16th, 10 days after surgery. By the 16th, my brain fog, headaches, tinnitus, neck swelling, and POTS symptoms were already entirely gone!! Neck pain and difficulty swallowing had reduced considerably as well.
I would highly recommend Dr. Liu to anyone suffering with ES. He and his team were excellent from start to finish, and I do believe his approach to surgery is highly unique and may be the future of ES care, especially for those with vascular symptoms. I had initially refrained from requesting an appointment with him in the hopes that I might find care on the west coast. One month after surgery, I can wholeheartedly say that traveling to New Jersey was completely worth it. If and when it is time to have right-side surgery, I definitely plan to go to Dr. Liu once again.
I am grateful that Dr. Liu is willing to work with ES patients and include ES surgery in his vast portfolio. After months of being talked down to by other surgeons, it felt like a shock to work with such a talented neurosurgeon who completely validated my experience. This journey has definitely underscored for me how important it is to advocate for ourselves and has left me with a debt of gratitude to surgeons like Dr. Liu who care enough about this condition to advocate for those experiencing it. Dr. Liu and his team go above and beyond to ensure that their patients are well taken care of in both big and small ways! For example, as a darker-skinned person, I have a tendency towards hypertrophic/keloid scarring (the scar on my earlobe is from a previous keloid removal) – Dr. Liu used a subdermal suture technique for my surgery which has significantly helped to minimize risk of hypertrophic scarring.
For those suffering with ES in the Pacific Northwest, please don’t hesitate to DM me if you’re curious to learn more about my experience with Dr. Liu, and navigating care in Seattle and Portland. A few pictures below, and I’ll make sure to post more soon! Dr. Liu has given me my life back - now it’s time to put it to good use!
four weeks post op:
three weeks post op:
two weeks post op:
one week post op:
