I’ve started and stopped writing this update probably at least a dozen times since returning from Minnesota on October 1. I usually get a strong start and then end up crying and abandoning the whole idea because the reality is that the only update I have to share is not on I can even come to terms with myself.
But my community of people, both online and off-line, have carried me through so much and supported me in so many ways, including financially through my spot fund account, and I know there is a bit of genuine curiosity that comes from a place of true love and care. For that I am so thankful and for that, I’m finally taking the time to do a hard thing and to put digital pen to paper.
Essentially, to put it simply and concisely, the extensive testing/imaging I had done at Mayo this fall did not find anything new. The neurologist I saw there does feel strongly that the cause of many of my symptoms is a CSF leak, specifically a CSF- venous fistula. Unfortunately, the imaging they did was not able to pinpoint the location which means there’s no possibility of a definitive repair/cure.
Each day of imaging required a lumbar puncture/spinal tap (LP), and for some unlucky patients (aka me), the LP itself creates a new hole for the CSF to leak out of, causing an acute worsening of symptoms. The fix for this is a blood patch (EBP) where they draw blood from a vein in you arm and inject it into the spinal column, in hopes that as the blood clots, it will form a seal over the hole. So after several days of worsened pain & nausea, Mayo performed an EBP. 48 hours after this we flew home - I hadn’t felt any relief since the EBP but I was eager to get home and rest more comfortably. The flight was incredibly rough as sitting upright severely worsened my symptoms, as did the in-flight pressure changes. During the flight, I drafted a desperate message that I sent to my local neurologist as soon as the wheels touched down. The very next morning I was in her office brainstorming solutions - she felt strongly that I needed another EBP (likely because there were two LPs meaning two new holes, and only one of those was patched at Mayo), which she ordered right then, and as my symptoms were severe and unmanageable, I was sent to the ER to expedite the process. After a loooooong many hours sitting in a chair in the hall, it was determined I should be admitted overnight as the EBP would not be able to be done until the next morning.
The next morning rolled around and I was told the radiologist team had changed their mind and wanted to wait several days until attempting another EBP, citing that they wanted to give a full 7 days for the mayo patch to “take” and provide improvement. At this point it was Saturday, so I was sent home and told that radiology would reach out to me Monday, the 7 day mark, to perform the EBP as an outpatient. Monday came around, then Tuesday, then Wednesday. Still in excruciating pain, vomiting anything I ate, unable to sit upright. After several unsuccessful attempts to contact radiology, my neurologist finally heard back and was told they had refused me as a patient and would not perform the EBP under any circumstance. This was of course frustrating and mentally I tried to just focus on my symptom management, trying to build my stamina each day as I approached the date I was to return to work. I got just a little bit stronger each day and tried to get enough protein and fluids via smoothies and of course extra IV fluids. The biggest struggle besides the pain was that the vomiting meant I was not able to consistently keep down the medications that keep my other illnesses under control.
I did go back to work, but on my second night back experienced pretty severe chest pains and palpitations throughout the night with heart rates hovering around 130-160, even at rest. I went home from work and bolused myself with 2 liters of fluids, hoping that dehydration was the root of the symptoms. A few hours later it was clear I couldn’t manage this at home so I went back to the ER - but chose a different one this time given the experience from the week prior. Thankfully this is also the ER I used to work in and my old family took such good and gentle care of me. Un-thankfully, my heart rate continued to be elevated and my labs showed concerns for sepsis, so I was admitted. Honestly, at this point I knew it was for the best because managing at home clearly was not sustainable. After negative blood cultures and 48 hours of IV antibiotics, sepsis was off the table and radiology was consulted per my request, to evaluate me for a possible EBP. Thank GOD this radiology team had no reservations in agreeing that a second EBP was needed and it was performed the next morning. As is the case with nearly ever EBP I’ve ever had, pain management was a huge struggle in the days to follow, but it was almost immediately clear the EBP had worked and after 9 loooong sleepless nights in the hospital I was back home again, with zero physical stamina and a desperate need to get back to work.
The months since that discharge have been fairly uneventful by my standards, with daily pain and nausea continuing to be an issue but the acute worsening behind me. A tele-health appointment with Mayo in November confirmed what I didn’t want to hear - the only next option to move forward is to return to Rochester for more advanced imaging which yes, requires two more LPs and no, there is no way around that. This advanced technology is limited and has a waitlist, but I’ve been surprised that was already offered an appointment for February 2026.
I have MANY qualms/hesitations/concerns about putting my body through this entire process again, which I’m sure anyone who has read to this point can understand. I was hoping to delay these scans and give my spine more time to recover, so I was admitted on Thanksgiving day to receive supportive medications to hopefully reduce symptoms and “bridge” me to a Mayo trip. That medication made me super sick and did not help my symptoms at all, so it’s clear that a return to rochester needs to happen soon whether I feel ready or not.
Processing all of this is so difficult, as is figuring out the logistics of getting more time off work, booking more round trip tickets, hotels, etc and all of it in the context of a new year and new deductible means this option is NOT cheap. But it’s necessary, and as I always do, I will find a way.
There is a chance they find something new this time and even a chance it leads to a cure, a permanent one. But there is also a good chance this more advanced technology finds nothing new - and that, of course, would be devastating.
I don’t know how much I’ll share about the process but I just wanted to update for those who have wondered how the trip went, what happened after, and why I’m going back. Thank you from the bottom of my heart for caring.