Hi all,
I had my surgery on September 2nd with Dr. James Liu. The entire process was seamless and I will try to outline the major points of the surgery and my experience for everyone considering this.
I had a CTA with contrast and pressure measurements. They place a catheter line in your groin or wrist and run a wire through your aortic arch up to each jugular and other main cerebral veins to get exact pressure gradients.
It was confirmed my right side was a near full occlusion (blocked by styloid) and it was really nice to have great detailed real time evidence that this was the right decision to move forward with surgery.
After my CTA in the morning I was immediately admitted and kept in the hospital for close monitoring and care by the teams which again was seamless.
After the overnight I was taken down to be prepped for surgery which there wasn’t a lot of prep. I was in a waiting room on my hospital bed for about 45 minutes hanging out with family and friends and then as soon as I met with all of the surgical team including Doctor Liu they wheeled me into the operating room and got me on the table. The anesthesiologist was very nice and started making casual conversation with me as he began to make me relaxed. One moment we were talking about fishing and hobbies and the next moment I was waking up in the recovery room. I was somewhat groggy but overall I felt very good. I was attended by a nurse the entire time here and she was very thorough, encouraging and, positive. I was here for an about an hour a half. The entire time blood pressure, oxygen saturation, heart rate and rhythm all constantly being monitored.
After this I was transported to get a CT scan to get a visual of how the vein had opened up. Once this was done I was wheeled up to the room I was in before which is a big spacious hotel like room that can fit plenty of people. They have food that you can order from the cafeteria all part of your stay and it will be brought to you. They have liquid options if solids are a struggle due to surgery. Again all vitals are constantly monitored and nurses and doctors come in regularly to check on you, perform neurological tests, and give you any medication you may need.
This room is where I was for the rest of the time. Day 1 was pretty rough after the pain meds wore off that the surgery team gave me before leaving the OR. I was then put on oxy, steroids for swelling, and a short course of iv antibiotics to prevent infection at the surgery site. Overall I felt SO MUCH BETTER. There was this newfound peace, I could feel body functions like digestion, blood flow, and autonomic coordination coming back to life. That made me so happy that I really didn’t even care about the pain and stiffness from the surgery. I could not use most of my neck muscles without pain all through day 1. The oxy and steroids made this bearable though.
Day 2 my sleep the from the night before was atrocious… i got an hour in and fight or flight symptoms all came back. I noticed they came back close to when I started getting my steroid medication through the IV. Steroids are essentially a synthetic stress hormone (cortisol) this is why they work because if you are running from a bear the cortisol will prevent your body from starting recovery processes until you are safe this inhibits the intense post op swelling. This checked out to the way I was feeling though it was hard to finally have this long saught peace only to have it stripped away from you quickly. I started getting a bit more mobility in my neck and was able to do 4 laps around the floor I was staying on. I was continuing to feel better but it was still up and down.
Day 3 (current) - my body has slightly adjusted to the steroids and has most likely reduced output of its own natural cortisol because I was able to get the best sleep I’ve had in over a year and a half last night (in a busy distracting hospital no less). My deep sleep was near 2 hours total almost 30% of my total and I could feel it. The surgical site was much less painful I have a ton more mobility in my neck and I was able to eat solid foods and feel GREAT! pain is probably at a 2-3 currently and do not need propranolol to keep my heart rate in control- it is back to the normal 40-50’s resting without medication. My blood pressure is normal without medication too.
I met with dr Liu today and I will be discharged sometime later today. I will continue to update with my healing and please if you are having any questions on your journey use myself and all the resources you have here. It is such a dice roll when you are self diagnosing and I know how nerve racking it can be.
Thank you to the moderators and all of their hardwork, knowledge, and patience. As well as everyone who gave me their perspective along the way here. Because of this journey my daughter will have a dad that can function not just at 10% but fully be there with her in all aspects of life to help guide her in making a positive impact on this world so as I told the doctor each of you have inadvertently touched thousands of lives by proxy.
