JODI ETTENBERG - MONTREAL, QC
My CSF Leak journey began in 2017, with a routine lumbar puncture (LP) to check for a brain bleed. At the time, I was living in Oaxaca, Mexico, working as a food and travel writer. When I got the LP, though, I was in the States, house-sitting in Brooklyn for a friend who was out of town. The doctor explained that they would first do a CT scan, and then if it turned up nothing, a LP to ensure it was safe for me to fly home. I had friends and family who received LPs for various reasons without incident, and the doctor said it would be a routine procedure, over quickly.
Not in my case.
*Lying flat when the leak first happened.
What followed was excruciating. The needle was inserted then reinserted with attempts to reach my CSF. The local anesthetic did not work for me, and it was legitimately the most painful medical procedure I’ve had. I do not know how long it was, but friends waiting at the hospital with me said at least 30-45 minutes. Ultimately, they were able to access CSF and had me lay flat thereafter. They discharged me later that evening.
After the procedure, it felt like a horse had kicked me in the back but I did not have the headache that often accompanies low pressure leaks. Until day 3, that is. Three days after the LP, I stood to get some food and suddenly it felt like someone had hit me in the back of a head with a baseball bat. I became dizzy and nauseous, and would have fallen over were it not for the friend helping care for me at the time. I had no history of migraines and this was unlike anything I’ve felt. It felt like I lost control of my entire body and brain.
During the next few days, I kept in touch with the nurse line at hospital where I got the LP to understand what was happening. Eventually, after a week of it not abating and my only able to lay completely flat — and even then the room sometimes spun — they said to come in for a blood patch. Unfortunately, the pain management doctor at the time said I seemed ok and that things would heal on their own. He said he’d never heard of someone not healing eventually, and the blood patch simply helped speed up the process.
They declined me for a patch.
*Outside duke radiology before my first patch.
My amazing mum and stepdad then drove to Brooklyn from Canada to pick me up. Back in Canada, I went through months of frustration and pain as many leakers do at the beginning of their journey. For me personally it was a reckoning. With sadness, I began to understand based on stories from other leakers with similar facts that my life as I led it - the freedom to live abroad and work for myself anywhere in the world- was likely going to change. As a non-resident of Canada at that time, I did not have a GP and had to seek treatment via the ER. There, the doctor told me I had migraines, and the neurologists wanted me to go to a headache clinic.
The continuous insistence that I did not have a leak is something many other leakers deal with. In my case, it surprised me because I did not have chronic headaches, and then I got an LP with 18g needles with multiple attempts, and then 3 days later the brain headaches began. These were accompanied by the “brain sag” occipital pain, photophobia, phantom smells, tinnitus, word-finding issues, nausea, tremors, and more — which almost entirely went away when I laid down. Except my new friend tinnitus - the tinnitus was around regardless.
Despite trying to focus on the positional aspects of my symptoms, the narrative of how I had none of these symptoms until the LP, and bringing papers from Duke, Cedars-Sinai, and other leak experts, I was told I had migraines. Still, the local doctors were willing to do an MRI of the brain, which I seized as an opportunity to try and get leak treatment on my own.
Thankfully, at that time Duke was still accepting self-referrals and I submitted the brain scans and a cover letter with my story. They agreed to see me and added me to their waiting list. My family and I trekked down to Duke - me laying flat in the back seat along the way. Duke performed a CT myelogram (CTM) that did not show a visible leak, and then 4 rounds of fibrin and blood patching total. Despite the negative CTM, Duke agreed to patch based on my narrative: no issues of positional headaches or migraines, nor the other symptoms, until my LP. They also said that it was generally more difficult to find LP leaks on CTMs.
I had improvements after each round of patching at Duke, and the third round sealed me -- and it felt very different right away. As soon as I stood up at the hospital I remember turning to my doctor excitedly to tell him that I felt really different. After two weeks of this positive change, I fell while sitting down into a chair, and blew the patch.
Duke agreed to one more round of patching mirroring the 3rd one since the 3rd patch worked but blew aggressively. During the patching process, however, I went into anaphylaxis, most likely (they think) due to the fibrin glue. It was toward the end of the patching and I could feel my face swelling and my arms burning. They did IV steroids, and then flipped me over on my back to inject me with epinephrine for the first time in my life. Thankfully, the epi took down the reaction and I was able to wheel into recovery.
That 4th patch did seal me, though it took 6 weeks for the rebound high pressure to kick in. I was taking methazolamide throughout to keep pressure low, so at first it seemed like the patch didn’t work. But bit by bit, I started to get upright and walk and by a month after patching I was walking several kilometres a day very slowly. The months after were the slow process of managing high pressure and not pushing too hard, protecting my leak site with no bending, lifting, or twisting.
* Walking up mount royal on my birthday 8 months after my patch.
I spent 9 months sealed and was regaining some mobility when I blew my seal.
I did so sitting on the ground gently, so I’ve learned sitting is a problem for my leak fixing!
Unfortunately that was September 2018 and as of yet I am still not sealed. While many people find great success with normal patching process, this leak revealed comorbidities that I only learned of during my journey: a connective tissue disorder, mast cell dysfunction, and most recently, the early stages of adhesive arachnoiditis.
My spinal CSF leak derailed my life, and my work. Many of us can say the same. Life changes in just a moment, and while I am not yet sealed again I am thankful for those 9 months where I did get a semblance of normalcy back. I hope for more scientific developments: less invasive and more precise imaging, treatments for the underlying conditions that make patients like me harder to seal, and a better understanding of connective tissue and its role in hampering leak sealing.
Doctors and leak foundations are hard at work to educate and raise awareness for this condition. I’m grateful for the technology that led me to a group of likeminded people and helped me know that I could self-refer to Duke. Even for those who are lucky enough to be sealed, this condition leaves an indelible mark and the community of leakers remains close and supportive.
Ultimately, these last few years have taught me a lot about grief and loss, and about perspective. Health journeys can force us to look inward, and I look forward to the day when I can look outward once again.
Jodi’s full spinal tap journey is at Legalnomads.com/spinal-tap