So, I thought it might be helpful to memorialize my experiences now that I’m 2.5 weeks post op. Surgery was on July 17th at UCSD with Friedman and Schwartz (the Dream Team). By way of background, I had what was referred to as a “small” (about 1.5cm x 1.2cm) AN in my right IAC. Prior to surgery I had lost all hearing in my right ear, suffered from tinnitus, ever worsening balance, and was experiencing some facial nerve symptoms. All of these symptoms developed over about a year and the actual AN diagnosis was only 3 months prior to the surgery.
After the initial shock, I used this site extensively to research and learn about this rare condition. I found the doctors that I wanted to interview, and I learned the different treatment protocols along with the watch and wait alternative. Given the evolving symptom set, all of the doctors I interviewed weren’t comfortable watching and wanting to see what else the tumor negatively impacted.
After settling on the Friedman/Schwartz dream team, we set a date for the surgery and I began my pre-operative preparations. I started doing some vestibular rehab exercises on the thinking that it couldn’t hurt and it might help. Most of my high intensity exercise activities (crossfit, mountain biking, etc) had fallen by the side as the tumor started impacting me. It often felt like the tinnitus and dizziness just got worse the harder I would work out. So, I switched to walking and my goal was 4 miles/day prior to the surgery.
As the surgery day neared, I had my phone consult with the anesthesia team and we finalized our hotel dates. We decided to depart 2 days after our last appointment with the doctors just in case there were any complication. My wife and kids all traveled with me to San Diego and we stayed at the Hyatt where the view from our room was ironicallly the UCSD medical center. On the day before the surgery, we met with the surgeons one last time to go over any last questions and/or concerns. At this point, the questions were more specific than before and included the size of the incision on the side of my head, and the size and my preferred location for the one on my belly. Both doctors did a great job, but couldn’t help themselves by repeatedly referring to my AN as a small one and that it would be no problem. The last appointment of the day was with the PT team so that they could establish a baseline before the surgery. As usual, their tests surprised me by showing just how badly my balance had deteriorated. I could not stand heel to toe at all without falling over was just one example that surprised me.
The night before surgery, we decided to have a big steak dinner with our family and friends from the area. It was a great way to take my mind off of the impending surgery, and as a result I slept very well that night. Morning was at 4:30 so that we could make our 5:20 check in for our 7:20 surgery. The entire process and the entire UCSD facility was impressive. A purpose built healing facility that is warm and inviting at the same time. They even thought about areas for the family to gather and to lay down if necessary. I have to admit that my anxiety level was elevated that morning as they finally took me back to the pre-op room and set me up with my IV. It was at that moment that the significance of what was about to happen hit me. After signing all of the necessary consent forms, and speaking with the surgeons where I reiterated the importance of protecting the facial nerve, I met last with the anesthesia team. They had a number of questions for me and talked me through what would be happening next. Once everyone said their goodbyes, I was wheeled into the operating room, and within a few minutes I was out like a light.
When I woke up, it felt like 5 minutes had passed, but there was my wife and the doctors. The thing I noticed immediately was that the world wasn’t spinning at all. One of the great mysteries going into the surgery was just how badly the vestibular nerve had been damaged by the AN. If it was significant, the doctors felt my risk or spending weeks post op in a spin cycle would be low. Because I had already lost 100% of my hearing, the Translab approach was the consensus amongst all of the teams we consulted with. In that approach, the vestibular nerve will be cut, and in my case, we would soon find out, it actually made my life much easier.
Once I was coherent, the first thing I remember hearing was someone saying that the surgery went well, but that they were surprised to see just how involved such a small tumor was with the facial nerve. In order to protect that nerve, only 80% of the AN was removed. At this point, I recall Dr. Friedman commenting on how lucky I was to have such an experienced surgeon in Dr. Schwartz because he had seen other neurosurgeons faced with similar situations refuse to even attempt any removal. I was instantly filled with relief and anxiety at the same time. Yes, I completely agreed with Dr. Friedman. Dr. Schwartz is the best, and I was lucky to have him at my table working on my tumor. But, at the same time, the thought that this just might not be over was depressing me.
Off to the ICU I went and what an ICU it was! The day nurses were amazing and experienced (the one night nurse my first night was a traveling nurse wasn’t that great as she didn’t know the condition at all). Initially, I kept expecting the world to start spinning, but it never did and I eventually grew to trust that it wouldn’t start. The pain was an issue, but so was the discomfort and for someone who has very little prior experience with drugs - they just suck. When I was able to, I asked for some jello to eat and noticed for the first time that I had a metallic taste on the right side of my mouth. Dr. Schwartz would later say that it was somewhat common when they have to work that closely with the facial nerve. He thought it would eventually fade in a few months.
I basically just laid in bed the rest of the surgery day and night with the nurses doing a check on vitals and Nuero every hour. Even if I was able to sleep, it would have been impossible with someone waking you hourly. Fentanyl was also administered hourly for pain as needed. It never seemed to do much for me. The next morning I was greeted by a PT team member who was there to do an assessment. Her goal was to get me sitting up. In the end, we ended up doing 2 walking laps around the ICU wing. Me walking and she carrying my EKG monitor and my pee bag (forgot to mention the Foley catheter- so did the doctors - surprise). Needless to say, the PT folks were ecstatic.
Pain or I should say pressure was starting to be an issue, but the hospital bed with its ability to sit me at a higher angle was masking some of it (an issue that would hit hard when we left). I continued to do my walks per the PT prescription and the doctors and nurses were all excited that I was doing so well. As you might imagine the push to move me out of the ICU and the hospital started pretty soon thereafter. At 3am my second night in the ICU, I was moved out of the ICU and into a step down unit. The team there was very nice, but the 3am relocation wasn’t great. PT came back that morning and walked me through several more tests to include stairs and some hand/eye coordination checks. They then cleared me for release. It really was amazing how much better my balance felt than before the surgery.
Just after lunch, 2 of the team member doctors from Dr. Friedman’s came to remove the pressure dressing on my head and to check on my abdomen incision. They thought both incisions looked great and suggested that I might be better off outside the hospital at this point given the pace of my recovery to date. I was a bit apprehensive about leaving so soon, but their mention that hospitals are the #1 source of anti-biotic resistant bacteria pushed me to the side of simply checking out. Once that decision was made, it took about another 2 hours to officially be sprung from the hospital.
I immediately learned that the hospital was a safe and controlled environment. The real world was filled with potholes, speed bumps, cars accelerating, car braking, and generally bad pavement. One thing I noticed quite early was the pain associated with the incision and it’s impact on my next muscles. Just trying to hold my head still was uncomfortable on the ride back to the hotel. Once we got there, my issues only got worse. The pain and discomfort quickly went from 4-5 on the 1-10 scale to 8-9 and the only position that worked for me was sitting up. My wife was in touch with the doctors on an hourly basis it seems and they suggested a steriod course to bring the inflammation down as I was complaining of pressure and throbbing. Some had said the belly incision would be the one that bothered me. It never did, it was always the head incision. After 3 days on high doses of Prednisone, I ended up with a Thrush infection in my mouth and some improvement in the pain and pressure. The doctors also suggested I try Tylenol rather than the opioids as it was better for this kind of issue. I didn’t mind not taking the opioids as there weren’t doing me any good and the constipating side effect is just not worth it when you get no relief.
I was pretty miserable and a pretty bad patient I’m told, but 5-6 days of nearly no sleep because you can only feel slightly better when you are propped up in a sitting position along with pain and head pressure is a recipe for an angry patient in my book. Finally, a week after my surgery, seeing no improvement to my pain, my wife took me in to see Dr. Friedman. (She wanted to take me earlier, but I just kept hoping it would get better out of fear of another “procedure”). After talking with us and examining the incision site (essentially pushing his fingers into my head), he was able to determine that I was dealing with fluid swelling at the incision site (not a leak mind you) and that this was increasing cranial pressure. He prescribed water pills to bring down the cranial pressure. I took my first water pill that afternoon at 1pm, and by 3pm my wife said she had her old husband back again. It was like the clouds had finally parted and the sun was out again. The pain dropped down to the 2-4 range and it was totally manageable with the Tylenol. As each day passed, the water pills only made things better. The next day was our post op with the surgeons and the PT Team.
I had to admit to the PT team that I had done none of their exercises because of the pain issue. They ran me through the same diagnostic tests as before the surgery and were blown away at where I was without doing any of the exercises. They identified 2 areas that I still needed to focus on and gave me a set of exercises to work on specifically.
Both doctors were pleased with the progress, confirmed the diagnosis and the Diamox water pill treatment plan, AND wanted me to get an MRI to rule out the possibility that a vein in my head was blocked as a result of the surgery and causing the pressure. The last bit threw me for a loop as we were set to leave in 2 days and a clean MRI would be a requirement before we could leave. THANK GOODNESS for the amazing folks at UCSD who upon learning of our travel situation were able to squeeze us in the very next day for that MRI. The results showed no blockage, so I was given my wings to head back home to Hawaii.
Since getting home, I have been diligently walking about 2 miles a day, resting, and trying to do my PT exercises (those things tire me out soooo fast). It has been a real challenge to avoid any exertion, but I really don’t want to have a CFS leak so the caution is worth it. I’ve just seen too many stories of folks rushing back to the gym at 3 weeks and 1 day only to spring a leak. I am committed to doing everything to avoid that being me.
Cognitively, I feel good. I have been working from home and pacing myself by limiting email time to 3 hours a day spread out over the course of the day. Too much hard analysis or lengthy conversation tires me out much more than I would like to admit. I still don’t feel comfortable laying against my incision. I usually sleep on my left side or on my back, but with a pillow under my right shoulder. With each day the incision feels better, but it is still uncomfortable if I lay against it. I’m also still taking 3 water pills a day for another 2 weeks and hoping that when I get to the end it’s going to be okay.
Tinnitus is generally much less to non-existent these days which is nice. My balance continues to get stronger. I will get random stabs of pain (maybe a 4-5) on the AN side or in that AN ear, but they come and go quickly. If I get stressed or over do it on my walk, I definitely feel it on the surgery side. I still can’t open my mouth as wide as before without some pain, but the range of motion is getting better.
All in all, I’m pleased with where I am right now. I’m trying to be cautious and will aim to give myself about 8 weeks before I engage in anything strenuous. Some doctors say 3 weeks is fine. Some say 4. Some say 6. I’ve seen reports of people springing leaks at all of those periods. I haven’t seen any beyond 8 weeks so that is my target. I read an interesting thread here about when it was safe to go back to having sex and some commentators asked if it was a man or a woman that they were answering for. I got a chuckle at that and realized that that activity certainly qualifies as one that is strenuous and involves my exterting myself so that’s on hold as well.
I hope this helps folks who are struggling with their decision making. I know that this site is filled with many stories that didn’t go well. I think mine went pretty well, and I’m happy to answer any questions.
