Slides
Transcript
Thank you all so much for being here. It is an honor to be talking today. The patching process can be arduous and have a lot of ups and downs, and I am so excited to explain what that process was like for me today. We are going to be covering the patching experience and then some practical tips, but before that, I’m going to go into a little bit about my story.
So, I began leaking when I was 14 years old, but I didn’t get a diagnosis until I was 26, and my provider and I had me do four fibrin and glue patches over the course of one year. The first one was successful at sealing me for two and a half months. The second one had ambiguous results. It might have helped a little bit for a couple of weeks, but then it seemed to fail. The third one failed immediately, and the fourth one was successful at sealing me for 11 months. And about a month ago, I began leaking again.
So, in the patching experience, I’m going to be talking more about what it was like to have my first round of patches and my fourth round of patches. In that first round of patches, I’m going to describe kind of the narrative experience of patching, and I’m also going to talk about what it was like to have a little bit of a harder recovery. Then I’m going to go into the fourth patch, which I had a much more successful recovery.
So, the first patch – this is me on the day of the patch. I was very excited because, after 12 years of symptoms, the idea of having relief was amazing. Getting to the procedure, I expected everything to be so challenging and big because there was so much travel involved. You have to fast beforehand. You have to only have clear fluids, and all of this preparation just led to me having the impression that this was going to be like an hour or three-hour procedure. It was about 15 minutes. It was very short, and I remember asking my provider, “Oh, are we all done?” and he was like, “Yeah, that’s it.” I was pretty shocked because, for me, when they had me back, they were asking me a lot of questions prior to the procedure, and they rolled me in on that gurney that you see there, and then they placed me on my stomach, and they injected the needle into my spine.
Each time, I only felt very slight pinches due to the local anesthesia and the sedation that they had. So, for me, it was almost painless and light pinches. But I do want to emphasize that there’s a very wide range of experiences here. For some people, it can be quite a pain experience because there are a lot of nerves in that area.
So then, directly after the patch – after the patch, they flipped me over so I was on my back, and then they rolled me back into a recovery room and they had me stay flat for about an hour. I could not even get up to go to the bathroom, so please go to the bathroom prior to your patch – pro tip. But for me, I was really shocked because I had almost immediate relief after the patch. My 12-year-long headache went away, and I did not remember what it felt like to not have a headache. It felt so much better than I even thought possible. I remember being nervous beforehand, like maybe having no pain isn’t that big of a deal. Once I felt that relief, I was like, “Oh, this is better than anything I ever dreamed of.”
Some people, even with a successful patch, don’t have that immediate relief and kind of that miraculous moment that I did. For some people, it can take four to six weeks, especially if you have blood versus fibrin glue. My understanding is that blood patches can take a little bit longer.
Then, the following days after the patch. So, after the patch, after that hour flat, I was transported. They took me in a wheelchair to the car, and I had to get in the car very carefully, not to move my spine in any way. My physician recommended that I do 3 days flat after the patch, which is what I did. For me, the post-patch back pain was pretty mild overall compared to CSF leak pain, and I was able to just manage it with Tylenol. I didn’t have to take any of the harder medications that were prescribed for me. But for others, again, this can also be very different and very intense.
What did surprise me with its intensity was rebound intracranial hypertension. For me, this was some of the worst pain of my life, and I was not able to lie down after this began – about the third day. So, with that, on that third day, I had to sleep sitting up. And I requested medication from my physician, but we didn’t request it quite fast enough. So, when I was falling asleep that night, I was waking up – and waking up my caretaker, who is my mom – screaming in pain. For me, this was a very intense initial experience, and it took my provider and I time to figure out what the right medication was for me so we could really manage this rebound intracranial hypertension.
I also want to emphasize, not everyone even gets RIH as a condition post-patch. It seems like I was more predisposed to it since I was leaking for so long, and fibrin glue patches put you at a higher risk of rebound intracranial hypertension than blood patches – at least, that’s what my physician has told me.
Then, I had a much more successful recovery after my fourth patch, where I was sealed for 11 months. Over that time, I had a lot of symptom changes. So here are some of the symptoms that I had changed before and after. My constant headache became just a daily headache that was managed well with rebound high-pressure medication, and it was very different. I had no neck pain. I did not know that necks don’t hurt when you touch them. That was amazing to learn. Also, my foggy-headedness and my energy levels increased a lot. For me, that took about six months post-patch in that recovery process, though, so it did take some time.
I also had odd transient neurological symptoms, and those all began to resolve, and those also took time. Then, I had weird issues that people didn’t connect to my CSF leak – and we’re not sure if they’re connected, but they also resolved. Many of them were quite severe, like GI issues, idiopathic allergy issues that had been diagnosed as mast cell activation syndrome, having a lowered immune system, and then my POTS symptoms almost fully resolved.
I haven’t been to the ER in a medical crisis since my very first patch in 2022. And from 2017 to 2022, I went to the ER at least once every 10 months having some kind of significant medical crisis. So that’s been very awesome. And then, also, after eight months sealed, I was able to go hiking for six miles. I was able to be outside long enough to get sunburned, which, when I was bedridden, I could not do, so that was exciting. I was able to dance with friends, and I was also able to spend time upright with my nephews. So I didn’t only have to make games where I was lying down and telling them to run around me, but they did love those games. I could do just about anything by eight 8 sealed, which is something I never thought I’d be able to do again.
Now I’m going to transition into practical tips of different factors that helped me have a more successful patch from my first to my fourth. There are two factors here that were out of my control, which is, one, subsequent patching appears to have a greater effect of helping people remain sealed longer, and then, two, I was able to be sealed longer, which helped my RIH symptoms slowly improve.
But first, in the practical tips, I want to talk about my doctor’s recommendations. He recommended three days flat post-patch and no bending, lifting, twisting, or stretching for six weeks, and avoiding increasing intra-abdominal pressure as well for those six weeks. So what I did is preparation months before my patch. I practiced no bending, lifting, and twisting, and the other restrictions that he had for those six weeks prior, so that way it became my default way of moving prior to my patch. So that way, I wasn’t accidentally bending down to pick something up or accidentally twisting my spine as I rolled over in bed.
I changed the way that I exercised as well so that I was doing gentle movement distally from my spine so that I wasn’t accidentally encouraging a leak of any kind. And then, I also made my home more accessible and more conducive to these movement limitations. So, in my pantry, I had everything on a level shelf instead of having it too high or too low where I might twist my spine to reach different items.
And then, directly before the patch, when you’re in that office waiting, just be ready for fast questions from providers. And providers also be ready for patients to be a little brain fogged, and we might not be able to answer questions very quickly because of our cognitive issues. Something that might be helpful if you have a patient that’s really overwhelmed is turning off the lights if you are able. And then, for patients, be aware that providers have time for a check-in prior to appointment, but they might not have time to answer those in-depth questions like prognosis, and they probably can’t do that either via the portal, so set up an appointment prior if you need to.
And then, like many other procedures, wear comfortable clothing, don’t wear jewelry, maybe bring a snack afterward since you will have to be fasting beforehand, and bring something to occupy you. I will say, for me personally, I’ve always been so exhausted prior and after a patch that I just got to sleep. And then, also inform your provider about any active infections or allergies. I once had to delay a patch because of a two-and-a-half-month-long ear infection, and then I also had to be premedicated for allergies at different times for my patches.
And then, for post-patch tips, three days flat, prepare activities to do. I had a laptop stand like this. I did not use the pillow underneath, so that way I could remain more flat, but having a laptop stand was really helpful for watching shows or anything like that. Eat flat-friendly foods and have your caretaker provide that for you if you can, like quesadillas or any sort of finger foods. And then, have a lot of pillows for your body to make sure your joints are nice and comfortable so that way you can avoid twisting. And then Tylenol or some painkiller strategy for that post-patch back pain. For me, Tylenol was sufficient, but for many people, they require more, and then ice packs can also be helpful.
And then, in those six weeks post-patch, for me, I started reincorporating activities as small as possible. So, in the beginning, when I would go for walks, it was simply just the action of stepping outside that was physically taxing enough because I had been bedridden for so long that, physically, I was not capable of going for a longer walk than the action of stepping outside. And also, neurologically, I just did not feel capable of more because the lights were too bright and the sounds were too loud. And I also had a mentality of everything is the process of me retraining my brain so it can be able to see the lights outside, and having that mentality helped me feel a sense of purpose while I was recovering from that patch.
And then, don’t go to things – bring things to you. So, have a grabber like this, so that way you don’t have to bend your spine as you’re reaching for different things in your life, so not hunching over to grab things.
And then, practical tips – rebound intracranial hypertension. So, my first patch was successful, but my functioning did not improve right away due to rebound intracranial hypertension. I actually had to take off work for about two, three months for that first patch, but things that helped me so that I only had to be off for a couple of weeks for my fourth one was first experimenting with different medication under my doctor’s guidance. We eventually found our way to extended-release Diamox, and that was the winner for me. Raising the head of my bed – that also helps with the pressure. And then, drinking dandelion tea, wearing an ice beanie – I have two so that way I could wear one at all times – and then avoiding caffeine and salts. You can see me doing all of those lovely tips right there in that picture.
And for me, I had to look for the improvements post-patch month by month and not day by day. This varies from person to person. Some people are going to experience results a lot faster, feel a lot better sooner, but for me, each month I saw slight improvements, but I didn’t see any improvements day by day for those first six months.
So, my journey is continuing. My provider and I believe I began leaking again about a month ago at the beginning of October, and we planned for me to have another patch. Being sealed was awesome. It was better than anything I dared hope for since I was 14. And I have a very good chance of having a successful patch again, but even if I never get sealed again and I only got to be sealed for those 11 months, those 11 months were still so much more than I ever dreamed. Having moments without pain is everything that I’ve dreamt of for 13, 14 years, so it’s been amazing. And thank you all for the work that you do. And thank you.