Transcript
Hi everyone. My name is Jeremy Marks, and I’m joining you from Scottsdale, Arizona. I wish I could be there talking about something way more glamorous – like exotic vacation destinations – instead of CSF leak surgical considerations, but here we are. I know our time is limited, but I’ll try to share my own experiences and observations, and hopefully, I’ll be able to shed some light into the pre- and post-surgical process.
I have to begin by acknowledging that each of our journeys is unique. For me, prior to my CSF leak, I literally had no prior medical situations. The biggest surgery in my life was having my wisdom teeth removed. I was active in sports and worked out several times a week. I would consider myself in shape and generally a healthy person, no pre-existing conditions that I knew of. So, in the big picture, I was starting with a clean slate.
Funny enough – well, maybe not so funny – was my 2019 New Year’s resolution was to get in the best shape of my life. This resolution lasted a whopping three days. Yep, January 3rd to be exact. I remember it like it was yesterday. After an hour in a CrossFit class full of zombie walks and tire flips and whatnot, I drove home with the absolute worst headache of my life. Lying in bed made me feel fine, and I thought that a little rest would do the trick.
However, when I got out of bed after about 20 or 30 seconds, I literally would hear a whoosh that descended upon me from the top of my head, past my ears, and into my neck. I called it the “whoosh of pain.” It actually felt like I was wearing a 45-pound Olympic plate around my neck, and I had to keep it up by doing a shoulder shrug – like this. I’ll never forget that feeling.
The next couple of days were spent lying in bed and calling all my doctor friends to see if they had any ideas. I’m a techie, so while lying in bed, I rested my laptop on my belly and researched, which led me down many rabbit holes. After a few days and honing in on the possibility that it could be a spontaneous CSF leak, I convinced one of my doctor friends to order MRI scans with and without contrast.
As luck would have it, the medical facility was able to squeeze me in a couple of days later. For reference, at the MRI waiting room, I had to lie down on the floor while waiting because the pain was just too much while sitting or standing up. Lo and behold, the radiologist easily detected fluid, which was consistent with a CSF leak.
Over the next couple of weeks, I was able to get with a local neurologist who had training with one of the well-known university medical teams and was able to get a high-volume blind blood patch. This initial blood patch was extremely helpful and got me out of bed, but it didn’t fully diminish the pain altogether. And with my persistence and feedback on this case, we both agreed that I needed to further evaluate and get treatment elsewhere.
After sending out my case to several out-of-state specialists, with a stroke of luck, a spot opened up across the country, and I found myself on a plane in two weeks for a complete diagnosis, which ultimately turned into a targeted fibrin glue patch.
I made it back to Scottdale in one piece – patch intact – and began a cautious recovery. Throughout that year, I was able to get back to basic things, but I wasn’t myself, and not being able to participate in what were normal things in my life took a toll on me. By the end of the year, together with what was now my team of doctors, we came to the conclusion that surgery would give me the best chance to live my life without worrying and be able to do things that I loved.
I want to express my empathy for anyone stuck in limbo, trying to figure out the best path forward, and choosing the right treatment approach is likely the biggest decision you’ll face. I’ll share my surgery experience and details that might give you an insight into what to expect. Keep in mind, things may have changed in the last few years.
So, what did I bring with me? Most importantly, I had my wife – rather, she brought me. My surgery took place out of state, which complicated things. We planned for her to return home the day after surgery, since our kids needed her, and my best friend came out for the final stretch and flew back with me. Of course, I brought my phone and laptop, along with an extra-long charging cable. I also packed comfortable, loose-fitting clothing – nothing restrictive. Slip-on shoes were a lifesaver, as anything that prevents bending is a win. Honestly, I didn’t bring much else. My advice – travel light. Your spouse or companion will thank you.
Even though you’ve likely had plenty of scans, they’ll repeat them during your pre-op appointments. I remember after my myelogram I was wheeled into the post-procedure area. My wife flagged down a nurse to ask if they had found the leak or what they knew. The nurse, a bit hesitant, said no. Naturally, my wife and I kind of panicked. Well, she really panicked a lot. But 20 minutes later, the doctor showed up and assured us they found it and everything was good to go. Moral of the story – be mindful of who you ask for information.
Pre-surgery, we met a fantastic anesthesiologist who chatted with me about college admissions, since we both had high schoolers going through the process. That conversation really helped distract me from the needles. Once I was all prepped and ready to go, I remember being wheeled into the operating room and thinking it felt just like a sci-fi movie. Actually, it was more like an alien abduction. I asked when they were going to put me under, and they said, “Right now. Countdown from 10 to 1.” I think I was able to count down to seven, and I recall asking when the surgery was going to start, and they replied, “It already happened.” I really couldn’t believe it – that blew my mind.
After the recovery period, they wheeled me to a room where I had the surprise of a lifetime – not once did anybody mention a catheter. I probably overlooked this little minor detail because I had such little time to prepare for surgery. Honestly, I’m still trying to come to terms with it. The first night, I didn’t get much sleep – I felt really uncomfortable, but thankfully, I wasn’t in too much pain since I was still under medication. Depending on the protocol, they’ll likely take you downstairs either that night or the following night for a series of scans in a cold, dimly lit room in the basement. For me, that happened at 3:00 a.m. The table they transferred me to was ice-cold and uncomfortable. It wasn’t the most pleasant experience, but they needed to check out how everything looked. I was fortunate to have such fantastic nurses and staff members who made a real difference in my experience. To show my appreciation, I ordered special cookies from a local bakery and offered them to anyone who came to check in on me. They absolutely loved it.
As you plan for your surgery, I highly recommend discussing the discharge procedures ahead of time. You’ll likely need to see your doctor for clearance before flying or driving home, so it’s a good idea to coordinate that appointment to align with your flight schedule. Most people are prescribed medications for the week or two following surgery. I did take a drug called Diamox, which helps in high-pressure situations. If you ever find yourself taking Diamox, remember to drink tons of water. I thought I was hydrating enough and drinking enough water, but about 7 to 10 days after surgery, I developed a kidney stone. And let me tell you, a kidney stone is one of the worst experiences, possibly even more painful than the surgery itself. Being in the ER for a kidney stone post-CSF leak surgery is no fun and not where you want to be. If you have one takeaway or piece of advice from me, it is to stay ultra-hydrated while on Diamox.
I focused on my recovery and tried my best to stay out of trouble. I made it my goal to avoid bending, lifting, and twisting during the first 90 days, which is probably more than double the amount of time the doctor recommended. Having three boys kept me on the verge of trouble, but I steered clear usually.
The hardest thing after surgery, other than some physical discomfort, is not knowing if it worked or not. It’s important to be patient and give it time to see where you net out. For me, I started feeling improvements at about three weeks after the surgery, and at two months, it was evident it was successful. Everyone is different, so really try to listen to your body. After about five months, I was courageous enough to cautiously swing a golf club, even while I was still frightened about getting out of bed the wrong way.
Fast forward about five years since my initial leak and four years since my surgery – what limitations do I currently have? Well, practically speaking, none. I’m mindful of not bending, lifting, twisting, or handling extremely heavy objects, and I make an effort to avoid those activities. Sometimes, it even gets me out of some of the work I need to do. I’m not looking to take on extreme sports like bungee jumping or UFC fighting, but I can pretty much do anything else I want. I can confidently say that the surgery was a success, especially since I’m able to golf without any restrictions now. Golf encompasses all the elements that could lead to a CSF leak disaster, but my crowning achievement was golfing with my three boys last year in Scotland.
Another question I often get is whether I have any daily reminders of my CSF leak. My most notable daily reminder is tinnitus – a constant ringing in both of my ears. It’s especially noticeable when there’s no background noise, like when I’m trying to go to bed at night or fall asleep, or when I’m wearing noise-canceling headphones. They seem to cancel out everything except for the tinnitus. When I focus on it, the ringing can be pretty annoying, so I try not to focus on it, and thankfully, it doesn’t significantly affect me.
The area around my surgery site, around T10 – T11 in my back, is a bit sensitive, and I occasionally feel the scar tissue throb, which serves as a reminder. I’m still cautious about quickly getting up from a seated position because I’ve ingrained in my mind that I might lose my balance. Looking back prior to my surgery, I remember a patient who had undergone surgery for his CSF leak and shared videos of himself doing incredible flips and twists. Honestly, seeing that was a big inspiration, especially for my wife, and gave us the conviction that if he could return to doing these crazy flips and twists, then I could also regain my own active lifestyle.
I chose to document and share my journey on social media too and provide info and insights from my experience for others. I thought there might be someone out there – maybe someone even lying in a bed with a laptop on their belly, searching for answers – and perhaps they’d come across my story and find it helpful. By sharing my story, I aim to offer insight, a sense of hope, inspiration, and proof that success is possible, even if it doesn’t happen in a straight line.
I wish I could be there with you in person, but we’re headed out of the country this week to visit our son who’s studying in Rome for the semester. Now, that’s both exotic and exciting. To wrap up, I want to share something that I learned throughout this journey. Sometimes you don’t choose your story – your story chooses you. Together, we can transform this narrative into one of education, accomplishment, support, success, and giving back.
Thank you.