I want to start off by thanking everyone who runs and frequents this site and the information you are spreading for everyone’s benefit. I would not have advocated for my symptoms and pushed through to see Dr. Nakaji (I probably would have never found him) without this site and the support. I want to repeat that message that there is hope for improving your situation, and if you are facing setbacks in your journey to keep moving forward and advocating and caring for yourself.
There is hope!
My symptoms recap: CT with contrast results, Input appreciated
I am only 27 and had some symptoms as far back as a decade+, but it has been a bit of a frog boiling in a pot situation, with symptoms getting much worse the past 5 years, especially since my current job often requires looking down chin to chest for long periods. Only after feeling relief from surgery do I realize how severe they were.
I had CT with contrast on neck/skull base in October 2024 after seeing a local ENT, but that provider was a bit of a dead end and dismissed my concerns about jugular vein compression. So after researched online and through this site, since IJV compression was clear to me on the images, I decided to push for a referral to Dr Nakaji
Overall experience with Dr. Nakaji -
I would absolutely recommend Dr. Nakaji, 11/10. 6 stars. Every interaction that I had with him, and with those in the healthcare field who know him, indicate that he is fantastic in every way, personally, professionally and morally. I had the impression that he is truly dedicated to offering the best care to his patients. On top of that he is incredibly skilled and experienced, taking on complicated brain stem cases that other surgeons are afraid of. I have felt very well supported with him in my corner. I originally started the referral process when he was at Banner Health earlier in the year. Things were going slow and a bit disorganized to be honest. I had the complete opposite experience with his team at his new private practice.
They were amazingly quick to respond with getting everything set up, and communicating everything effectively. The process went very smoothly and quickly, which is extremely valuable for those of us dealing with debilitating symptoms. I submitted my consultation request on March 17th, and had surgery April 14th. This may be due to the significance and clarity of my case, I imagine more nuanced situations would take longer. They do offer to connect you with specific services regarding travel/lodging for those travelling to seek medical treatment for rare conditions.
After requesting for consultation, sending CT images and talking with his patient coordinators, Dr. Nakaji reached out personally over the phone to discuss symptoms and a plan moving forward. I missed his calls twice due to my own disorganization. That is a bit nerve wracking given he is one of the most in-demand neurosurgeons in the world, his time is unimaginably important. Regardless he was very down to earth and understanding, always very personable and pleasant to interact with.
He has a very logical process for diagnosing the issue to determine the best course of action. I am traveling to Scottsdale Arizona from Washington state, and for my case, I am able to do it all in a 9 day timeframe.
This includes Venogram, Consultation, Pre-op blood labs/EKG/Chest Xray, Surgery, and Post-op appointment 3 days after surgery. Dr Nakajis team coordinating everything on the medical side, all I had to do was book flght and hotel, fill out paperwork and show up. making it a very smooth process. With all this I still had a few free days to enjoy the beautiful Phoenix Arizona area.
Pre-surgery venogram
Dr. Nakaji works with Dr. Nikhil Mehta of Vascular Interventional Partners for Venogram/Angiogram to diagnose the compression itself, measuring pressure gradient above and below the stenosis. I will request images from the venogram to share here soon.
My case happens to be a very clear case, very apparent anatomy from the CT scan, and compression was very significantly demonstrated during the Venogram, when I put chin to chest both jugulars closed up nearly completely and intracranial pressure shot up. The collateral veins cannot support that much outflow, and It was shown that the smaller veins surrounding my spinal cord were engorged due to this, and were potentially putting pressure on my spinal cord similar to a slipped disc. I believe that was contributing to my neurological symptoms of spasms/weakness in my back/shoulders/hands
Dr. Mehta mentioned it was one of the clearest cases of jugular compression he’s seen
Consultation with Dr. Nakaji
Consultation was pretty straight forward, since I had already spent months reviewing my own CT images and researching symptoms I knew I wanted to move forward with surgery. My only concern was insurance coverage, Dr Nakaji mentioned that he’s had patients from all over and most patients have no issues after deductible, if they have a clearly define stenosis. He mentioned that his team they negotiate with the insurance companies themselves. I could share more of my experience further down the road when its all dealt with.
All pre-op procedures (Chest Xray, Blood labs, EKG, 2nd opinion clearance for surgery/anesthesia) were scheduled right then and set up with local providers, most of them in the same building, same day.
Right side Styloidectomy and C1 Tuberculectomy
Surgery went very smoothly due to Dr. Nakaji and his partners great skills. The surgery involved nerve monitoring in order to detect the facial nerves connecting to the styloid at roughly 4mm of length and avoid any injury to them. A good amount of my C1 transverse process was shaved down as well to provide clearance for the jugular vein. He mentioned that my 11th cranial nerve(spinal accessory nerve ) was smashed in there as well and he had to completely peel it out and reposition it. I thought I had a permanent shoulder injury from a skiing accident, it would always pop in/out of joint. but after waking up my shoulder feels brand new! It just works and moves correctly, and the nagging pain is gone.
Post surgery
The surgery was about 2 hrs and I felt better right away. Most noticeable is that my head no longer feels like a balloon! I stayed 1 night in the hospital as a precaution, but had no complications, spent most of the time sleeping. I was chewing soft foods for dinner, had some pain that night but didn’t even need Tylenol in the morning. I do have swelling on the surgery site, making it difficult to swallow, takes a few tries to get even smaller bites down. I imagine this will resolve once swelling goes down. Dr. Nakaji mentioned that sometimes patients will have mandibular nerve drooping for a short term afterwards but I did not have this. 1 day after surgery and I feel great. I would say all my symptoms are 75% relieved which is a miracle for me. My vision is much more binocular where as before it was a bit skewed and dim, I felt like I was behind my eyes. My mental is much clearer and I am able to concentrate much easier. I forgot to ask but I imagine my Vagus nerve was also compressed in there, I don’t feel nearly as much anxiety as I felt before. Even things I didn’t not attribute to it, all the way down my right side of my body. I had a tightness in my right low/abdomen/hip area that make it hard to take full breaths. I don’t feel that anymore. I also had a duck-footed gait, especially my right side, and its pretty much straightened out already. The left side is still a little out-toed. Walking feels natural. Before I almost had to think of every step, now it just feels balanced and automatic. Overall just much more clear-headed, peaceful and less pain.
I am very grateful for everyone who contributes to this site and the lifechanging information it shares! I will update this post as I gain more relevant information.
Thank you!
