Transcript
Thank you for the introduction. As mentioned, my name is Laura Tietz, and I’ve been a leak patient for just about four years. I’m here to discuss CSF venous fistula treatments, specifically transvenous embolization from a patient’s point of view. Please understand that these experiences are exclusively my own – unless otherwise noted – and will not apply to every leak patient. Near the end of my talk, I will also discuss where my leak treatment stands now. Please forgive me if I stumble over words – my leak makes it difficult for me to speak smoothly. You also may have noticed that I’m in a slightly reclined position – this is just a lot more comfortable for me and actually more realistic of my current state.
I’m going to quickly go through my leak story and then elaborate further on embolization procedures themselves. My story is an odd one. I’d like to preface by saying that I do have an underlying connective tissue disorder, which probably explains a great deal of what has happened in my case specifically.
On December 17th, 2020, I was assembling a play kitchen for my daughter for Christmas – she was 18 months old at the time. Now, as any of you who have recently parented young children might remember, for these giant plastic pieces to be assembled, they provide these tiny plastic screws with even tinier plastic holes to try and screw them into. I had to drape myself over the pieces to hold them together while engaging in intense Valsalva maneuvers to get those tiny screws in. I finally managed with some inappropriate use of power tools.
Immediately afterward, I developed what I thought was an atypical migraine, since the pain was in the back of my head as opposed to the front and sides where it usually is. I didn’t think much of this and went to bed. I then developed second-half-of-the-day headaches for several months but didn’t think much of it until five months later, when I was very suddenly unable to sit up without severe pain in the back of my head. With my medical background, I self-diagnosed with a spinal CSF leak. I went to the ER and was gaslit by my husband’s own colleagues due to a normal MRI. News flash – the MRI was abnormal.
To make a long story short, I was right about the leak. After two failed blood patches locally, I moved on to a leak center. A CSF venous fistula was found and embolized, and I had about 30% improvement from that. This is where the whack-a-mole part of my story begins. I had a salvage embolization performed and went into severe high pressure and blew new leaks the next day.
After many negative scans, the photon counting CT scanner was ready for use, and it immediately located two more fistulas. They had been invisible in previous scans due to their location in the internal epidural venous plexus – or IVP, as patients call it. After this embolization, I was sealed for two and a half months until a physical clash with my then four-year-old daughter opened up more fistulas.
On my next photon scan, five fistulas were found, again all in the IVP. After this embolization, I did not feel better. I’ll elaborate further on this near the end of the talk.
Now, I’d like to move on to the part of the talk that I think most of you are interested in – what does it feel like to go through a transvenous embolization?
Let’s start with the easy stuff. Embolization, or “embo” as it’s known among patients, is performed by a neuroradiologist with a small team of doctors and nurses in supporting roles. IV access will be established in pre-op. Once you are in the room where the procedure will take place, you’ll be moved onto the table.
Now, as far as I know, most embolization procedures are done through obtaining venous access through the common femoral vein, which is in the groin. You have one on each side, and both areas will be prepped in the event that they have difficulty accessing one side. So, at some point, your gown will be lifted up, and you’ll be exposed while the prep team shaves both sides of your groin. Another option is to take care of this yourself the night before the procedure. They will then clean the area before putting the sterile surgical drapes on you. At that point, you will no longer be exposed because the drapes will cover you.
When everything is ready to go, moderate sedation will be started. Now, for some people, the sedation works really well, and you may not remember much of the procedure. Then there are others, like me, who are still wide awake after typical adult dosing. T hat may make for a much more challenging procedure on your part.
After the sedation is started, the doctor will ultrasound the groin to make sure the common femoral vein is patent and will numb the access area with lidocaine. That just feels like a bee sting. Then, they will access the vein with a large needle, and if they did the local anesthetic correctly, all you will feel is a big pinch – not sharp, just a heavy pinching feeling.
Now for the big question everyone has – does the procedure hurt? Well, there are differing viewpoints on that. After conducting an informal, completely unscientific survey of leak patients, I have a few perspectives to share. These are shared with permission. A few people reported little or no pain, some reporting just pressure, but many people reported pain of various degrees even under moderate sedation. For myself, when the Onyx was injected, I felt like an elephant was sitting on me. I couldn’t breathe or ask for help or alert anyone that I was in distress. Tears forced themselves from my eyes, but I couldn’t do anything. It was only a few seconds, but it felt like forever.
Another leak patient reported, “I’ve had one embo with moderate sedation at T9 – T10, and I was in a lot of pain. I felt like I could not breathe and was being strangled from the inside out. Then I decided to do my second embo under general anesthesia.”
Another said, “In the moment, I wondered if this is what being stabbed in the chest or having a heart attack felt like. I couldn’t take a deep breath. I thought something had gone horribly wrong with the procedure. Sharp, tearing, incredibly intense. I screamed, and I think I twisted my entire body in pain. Thankfully, the pain was brief, although very intense.”
Along similar lines, another patient stated, “I had it done under light sedation, and it was very uncomfortable. I felt the sensation of the catheter going through my body, and at the point of Onyx injection, it felt like my ribs were being squeezed very tight, and it took my breath away. I wanted to cry out in pain, but I couldn’t even make a human sound. It was over very quickly.”
And last but not least, one patient who elected to do the procedure without a single medication reported simply, “I’m pretty sure I saw God.”
As for me, I did my next three embolizations under general anesthesia, and the procedure was delightful.
The next question I’m sure you all have is: how is recovery after an embolization? For my first two embolizations, I had some pain at the site of the fistula afterwards, where the Onyx was injected, that lingered for a few weeks. Many other leak patients have the same experience. You may also feel some groin pain where the common femoral vein was accessed.
However, embolizations three and four were a bit different. These fistulas were all located in the IVP, which is close to the spinal cord as opposed to being out along a nerve root sleeve. For me, the pain after those embolizations was shocking when I woke up. It felt like a straight, hot metal rod was in my back. It was hard to take a deep breath, and every movement made me cry out in pain. I couldn’t even stand up straight. Although the pain lessened over a period of weeks, from my last embolization I had lingering pain for 80 days after the procedure.
Other leak patients describe a similar recovery experience in the days and weeks after an IVP embolization. One patient stated, “I felt like a horse had kicked me in the ribs, and I couldn’t take a full breath.”
Another patient described their recovery experience this way: “At the time I had my latest embolizations done, even the expert doctors working on my treatment didn’t seem to realize how out of control the embolization pain is for IVP fistula patients. They need to understand. After the sedation wore off, I was met with such an intense pain at my embolization sites that I couldn’t stand to hold myself upright. Even though the fistulas had been successfully sealed, sitting upright worsened the pain. It felt like a searing, hot iron brand plunged straight into my spine. I needed narcotics to handle the first few days’ worth of pain. Over the first week, my 8 to 9 out of 10 pain dropped to a 7.”
A mother described the pain her child experienced after an IVP embolization: “My daughter could feel where she was plugged, and it hurt to breathe and move and sleep. After a few days, the pain began to recede, but she felt it for about two weeks.”
As with any procedure to seal a spinal CSF leak, you may experience rebound intracranial hypertension afterwards. However, not everyone does, and as we all know, you do not have to go into high pressure afterwards for a procedure to be successful. This can be managed in a variety of ways, but that is beyond the scope of this talk.
Lastly, adding insult to injury is the fact that you will stink after the embolization procedure, and I’m not talking about personal hygiene. Many healthcare professionals describe the smell as “creamed corn,” but it may also be a strong garlic-like odor. This smell is due to the metabolism of DMSO, which is the solvent that the Onyx is dissolved in. Oddly, you may not be able to smell it yourself. You can’t wash the smell off, no matter how hard you try, but thankfully, it only lingers for a few days. So, if you notice you’re getting side glances from people around you, there’s a reason for that.
And that is transvenous embolization from the patient’s point of view.
While preparing this talk, I was also asked to share my thoughts on the future of my own CSF leak treatment. I’d love to say I’m sealed and healed, but unfortunately, that’s not the case.
I made the decision about a year ago to try one final time to have something found, then stop treatment no matter the outcome. As I previously mentioned, this whole process has turned into a game of whack-a-mole, and I wanted to stop playing. So right now, I’m going to talk about what made me decide to stop treatment and just live with the pain for the foreseeable future, because I think it’s an important perspective for doctors and leak patients alike to know.
Throughout this whole process, over a period of a few years, I developed some medical PTSD – though that’s not a clinical diagnosis. I had excellent leak care, but that doesn’t matter when your body keeps the score. Every myelogram, every embolization, just added more to it. I always had this sickening feeling when a needle entered my thecal sac. I would vomit one time the day after every myelogram because my sore back would remind me of the sickening sensation. I somehow developed a random but severe aversion to oxygen tubing and oxygen masks as well.
My long-suffering husband and I made seven trips overall, and he had to keep changing where we stayed periodically, because being in the same housing would trigger episodes of vomiting and retching as the memories of the previous trip returned. Lying in the same bed where I had painfully recovered months before just made me feel worse. If I ever go back in the future, there is only one house that is safe for me. This all got to the point where I would even be nauseous on the way to the airport at the start of the trip, in anticipation of lying on the airport floor and a flight filled with pain. I just couldn’t do it anymore.
That was the mental side of things. Now comes the practical. I’ve had four embolizations of ten sites total. There’s so much Onyx in my spine that I would scare the living daylights out of an unsuspecting radiologist if I ever have a chest X-ray. We know Onyx can cause some issues with certain imaging to look for leaks, and that’s the dead end I’ve run into now. There’s too much Onyx in my spine to be able to see what is leaking with the technology that is currently available to us. I’m not pursuing any further leak treatment until a significant advancement comes along, whether that is two years from now, or twenty, or never. I make complete peace with this decision.
Choosing to live with a leak doesn’t come without certain caveats. I have no more than two hours upright collectively throughout any given day. Well, that’s what I like to say, but when I specifically timed my upright time during dura dash, I discovered that it’s more like one hour. If I venture outside these time constraints, I regret it for days after. I am on pain medications that help a little. However, I was denied palliative care because the doctor said, quote, “Your pain isn’t valid to be treated because it’s not caused by cancer,” end quote.
I don’t drive anymore because I don’t trust myself with split-second decision – making needed to safely operate a vehicle. This was further brought home to me when neuropsychiatric testing confirmed that I do have deficits in my brain function, likely due to my leak. As you can see, my head is shaved. My husband shaves it for me every two weeks because I have a lotion that helps my pain mildly, but only if I spread it directly all over my head, neck, and back. It’s worth it to knock the pain from an eight to a seven. So, between the pain medications and the lotion, I can go from an eight to a six, and that works for me.
So, for now, I’m just hanging in there for as long as it takes. Thank you, and I hope you enjoyed my talk and learned something from it.