Transcript
Hi everyone. My name is Sarah Berry, and I have a spinal CSF leak that was diagnosed in 2019. I’m grateful to share some of my experiences with all of you today with myelography, as I’ve been benefiting from this network for years and from hearing other experiences.
I’ll start with some basic context on my journey first, and then I’ll walk you through some of the details of the myelography, including learnings and strategies. This journey started for me around 2017 when I started to have symptoms that I now believe were linked to my leak. I had some positional headaches and other symptoms, and some imaging of my head and cervical spine in 2017 and 2018.
I saw a lot of health professionals over the years – from doctors to osteopaths to physiotherapists – until I was diagnosed with this suspected leak during an ER visit in 2019. Since then, I’ve had multiple hospital admissions, two blood patches, and lots more imaging. This includes two different myelograms spread over three separate procedures for CT and MR myelography in 2019 at a site close to home. And recently in 2024, a second myelography at a separate site much further from my home region. That was lateral decubitus digital subtraction myelography, and I’m currently waiting on scheduling for a third blood patch, which will be a targeted patch.
I was diagnosed with a CSF leak in 2019 following a very desperate ER visit. I’d been seeking help for many months, feeling increasingly ill, unable to cope with daily life, needing to lie down in the afternoons at work, and I had headaches that were so severe and nauseating that I felt unable to walk. After a very long ER visit on a stretcher in a hallway next to a public toilet, I had a CT scan and was admitted to neurology for a few days. I was discharged after fluids and caffeine. I was very eager to get back to my new job after having just made a huge career shift, but the symptoms returned immediately.
I was admitted back to the hospital – this time for a more extended stay. I had a first full spinal MRI that showed fluid collections, and my head MRI showed brain sagging. It explained my cognitive symptoms. It also terrified me. No one wants to hear the term “brain sag.” I was given a blood patch – lumbar – at the end of the week and sent home again, but my symptoms returned again.
This time I was referred for a first myelography. I didn’t know much about it at that point, so I spent some time researching the procedure using Google first, and then I dove directly into the medical literature using some of my academic permissions. I was most wary initially of the spinal needle and having another hole in my dura. I didn’t like the idea of gadolinium after finding reviews that indicated retention in the brain and bones.
I was anxious about having more radiation exposure after having a string of CTs in recent years. I messaged a medical physicist friend and asked him about cumulative radiation exposure, and he very patiently walked me through what he knew, but ultimately said, “It sounds like you really need this.” I really didn’t have any other options offered to me, so I did go ahead and do it.
The technical overview is as follows: I fasted ahead of the procedure, discussed risks, and signed the consent form with the radiologist. I put on a gown, positioned on my stomach – prone – and my back was disinfected. I was given a local anesthesia in that position, and then a 22-gauge needle was inserted into my lumbar lower back area. Contrast agents were then injected into my back. I was tilted to move the contrast throughout my spine, and I was transferred over to CT and then MRI for imaging.
I learned so much about the technical aspects of the procedure ahead of time but almost nothing about what it actually felt like or what to do afterward, and this can make it tough to prepare. So, I’m going to share candidly what it was like for me.
Luckily, the procedure was close to home, so I had minimal travel. I went home to my own bed. As for the procedure itself, the needle entry and head contrast pressure were the most difficult parts for me. The initial needle entry felt a lot less like a pinch and more like something plunging deep into my back. It was painful. I was also very worried that my jolty reaction to the needle would cause it to go too far or nick something in my spine and cause damage.
In retrospect, I wish that I had had some form of mild sedation to ease the anxiety. I did request it in my second myelography years later, and it helped. The other tough part was this feeling of sudden, intense pressure in my head when the table tilted downward to move the contrast. I literally felt like my head was going to explode. I asked for help, and there was a tech there who helped tilt my head up, and that relieved the pressure pretty quickly.
After that point, everything went relatively smoothly in comparison. I was rolled onto my back and then through CT and MRI imaging. It was fine. I was then sent home, where I went to bed and rested for the rest of the afternoon. But at some point, the anesthetic had worn off, and I started to have more discomfort. I found it was tough to move around easily – to even use the bathroom. I, at that time, hadn’t prepared ice packs. I didn’t have Tylenol on hand. I also didn’t know what movements would cause irritation, and after rolling over in bed that night, I ended up having these sharp, electric shock-like pain shooting through my lower back. I didn’t know what to do or who to call, and I had left the hospital without any contact information or follow-up plan. So, I didn’t want to go to the ER, but I was worried something was very wrong.
I had that off and on for about two to three days following the procedure. I tried calling my neurologist and then eventually reached the radiologist, who spoke with me and ordered some follow-up imaging. I met with him at one point. Following the myelogram, I was sent back to a different hospital several weeks later for a second blood patch. This one wasn’t targeted per se with x-ray guidance, but it was directed closer to the site of the leak at the thoracic level. I remember someone counting vertebrae until about T10.
I was given a nerve block after that patch to help address chronic nerve irritation that I’d had since the myelogram, and it did help relieve the pain that I’d had with basic movements – like even turning over while sleeping. It took me a while to accept that I was no longer leaking, and I gradually increased my activity levels between 2021 and 2023, including reintroducing some weight training to rebuild muscle mass. I was again extremely cautious.
In the late summer and early fall in 2023, however, I noticed increasing interscapular pain – upper back, lower back pain – whenever I exerted myself, chronic ringing in my ears, and some other familiar symptoms from 2019. I didn’t have any headaches, but I suspected that I was leaking again, and an MRI showed that I was. So, I stopped all exercise and weight training, and this time I received a referral to a new hospital site out of my home region that had experience diagnosing and treating spinal CSF leaks.
This time around, I was offered the option to do lateral decubitus digital subtraction myelography. It involved more complex positioning, was done on left and right side lying positions, but the different sides were spaced apart by one week. So, I did the left side and then the right side. Otherwise, it felt similar in procedure and technically it involved the following: I fasted again, there was a discussion of the procedure and risks that took place, and I requested a sedative at that time as well. I signed the consent form. I took the sedative, and then I was brought into the procedure space where multiple bolsters and pillows were used to help position me on my side. It did take some time to get the position right and involved some unique hip, arm, and head positioning. The positions got mildly uncomfortable after some time, but it was definitely tolerable.
Some markers were placed on my back, and then anesthetic and contrast injections took place. The initial needle entry was just as uncomfortable as I had remembered, and the second round actually caused immediate nerve irritation that radiated to my tailbone, my lower back, my feet, and a little bit to my hips. It was painful and worrying while it was happening, but it did subside relatively quickly.
The table tilt with contrast again caused intense head pressure once again for both the left and right side-lying sessions, but it was relieved by angling my chin towards my chest and also adding more pillows to elevate my head, which the radiology tech who was present helped me with.
The second myelography experience was comparable to the first, with some key differences. This time around, I was far from home and needed to arrange air travel, transfers, and accommodations. I had to arrive the day before, get some gel ice packs and food ready. It was expensive and required more planning. I also had to consider when to fly home after the final procedure, and I ended up staying in the area for about a week and a half, which allowed me time for both the left and right sideline procedures, which were a week apart, and a bit of time to rest and recover after the final procedure.
I took some small pillows on the plane with me, which helped with comfort, and I had help with my luggage from my partner. I found that for all of my myelography procedures, the first two days were the most painful and sensitive, and I would spend most of my time lying down and moving only small distances very carefully. By day three, things have always felt much easier, and while I still have some pain with movements over a month later after that procedure, such as rolling over in bed or landing too hard when I’m walking off the curb or a sidewalk, I am close to 100% recovered from that.
Communication as well – it’s so simple, but I can’t overstate how powerful it is when you’re freaking out on a cold table with a needle in your back – how important that is to have someone communicating with you and to feel like you’re staying connected to the team that’s present with you. I think it’s important both for patients and for physicians to communicate regularly and clearly throughout the procedure.
I found it can really help allay fears and anxiety and make everything easier to cope with. Anytime I expressed fear or pain and asked for help, I got it – whether that was a pillow or help to raise my head or reassurance that everything was going okay. I’ve learned that the radiology technician can also be your best friend in there. They are there – in your face and are willing to help reposition you or listen to you if needed. So I suggest asking their name and asking for help if you need it. The doctor behind you performing the procedure can also explain what’s happening, walk you through what to expect, and generally reassure you. It’s a team effort – staying connected to the patient on the table makes a world of difference in what can feel like a very alienating, foreign, and painful experience.
Post-procedure, I now have a protocol that I follow. I have someone dedicated to supporting me and being present with me to help lift things, get changed, and reposition. I also recommend taking time to rest after the procedure and avoid moving around too much. Soft gel ice packs also help ease back pain, as does Tylenol. Having loose, comfortable clothing and easy meals, snacks, and hydration on hand makes it easier to cope in the first couple of days. I recommend a water bottle with a bendable straw – especially when the anesthetic first starts off, and you really don’t want to move around very much.
If you have to travel, some small pillows can also help under your tailbone or your lower back. I also recommend avoiding carrying heavy luggage or heavy items and really having someone there to help you – especially if you’re traveling. I think the key here is I’ve found it’s not useful to push myself, and it’s really useful to rest in those first few days.
When it comes to movement, there are also some tips that have helped me avoid irritation in the first few days and even weeks when recovering. I had no idea how to move the first time I got home. When the anesthetic wore off, I felt scared to use the washroom or just feared nerve irritation. I found that by rolling over – by pushing without twisting my body – I really spared some lower back pain. Engaging my core or using my legs to push up to get out of bed or lower myself onto the toilet or bed made things so much easier when everything was very sensitive. There are some great videos online that show you how to do this carefully.
I hope that in sharing some of my experiences, you’re able to better prepare for your own procedures or support someone who’s going through a myelogram. I am, again, so grateful for the stories, tips, and support that were shared with me, and I wish smooth procedures, healing, and recovery for anyone facing this. As I was told through many stories previously, know that you are not alone.