Kimberly’s spinal CSF leak story
Many people with spinal cerebrospinal fluid (CSF) leak experience delays in diagnosis and treatment. In Kimberly’s case, she lived with challenging symptoms for 20 years until her spinal CSF leak was finally diagnosed and treated. Here is Kimberly’s story.
Onset: The beginning of strange symptoms
How old were you when your spinal CSF leak symptoms first started, and what was that like?
I was 32. The symptoms started suddenly in 2001. One day I was at my son’s school, in the teacher’s lounge. I was going to make some copies when I dropped some paper. After I bent over to pick up the paper, when I stood back up, I felt myself black out for a few seconds, and then gradually I began to feel like I was spinning. The more I moved around or moved my head, the more the spinning would intensify. After a week, I was diagnosed with benign paroxysmal positional vertigo (BPPV) and was given an Epley maneuver, which did the trick.
After that, over the next 15 years, I had only a handful of vertigo incidents, but I started having increasingly intense head pain in the back of my head and neck. I thought they were caffeine headaches, but sometimes they would last for days. I never sought treatment because I knew headaches were hard to diagnose and at the beginning they were my only symptom, so I just dealt with them until gradually they grew to the point where I couldn’t ignore them and sought treatment.
Did you have any other medical conditions at the time?
I have severe/profound bilateral hearing loss and I have worn hearing aids since I was five years old. The cause of my hearing loss has never been determined. Other than that and the BPPV, I was a very healthy individual who did not require many doctor visits.
What was the tipping point for you that finally prompted you to get evaluated for your symptoms?
The worst symptom for me was the throbbing in the back of my head when I would bend over. It all came to a point about eight years ago, in 2014. I was eating dinner at a restaurant when I felt some sort of painful pop. I yelled out and grabbed my head.
The next morning, I woke up with a strange feeling, and also felt a wee bit nauseous. I laid back down to rest after I sent my kids off to school, but everything slowly got worse as the day went on. My dad and my husband came to check on me. When they stood me up, I had horrible vertigo and started vomiting, so I was taken by ambulance to the emergency department, where I was treated for vertigo and sent home.
After that, I was very weak and shaken up. I had daily head pain and I eventually learned that lying down was all that brought me relief. I pretty much laid down every day and neglected my duties as a stay-at-home mom. You have to understand, I was a very active mom and wife, I loved caring for my home and family, and normally I did it all—I paid bills, grocery shopped, volunteered, cleaned, worked outside, did projects. After a few months of having to lie down all the time, I told my husband, “I’m either very depressed or something is very wrong.”
Finding a diagnosis and treatment
How long did it take to get a correct diagnosis?
Overall, from the start of my very first symptoms to identifying their cause, 20 years.
I finally went to the doctor about my symptoms in December 2014, and she immediately ordered an MRI. That night, after reading the MRI, my doctor told me I had Chiari Malformation. My cerebral tonsils had herniated down to C-1 on the spine, causing a problem for cerebrospinal fluid circulation. I know now, but I didn’t know then, that Chiari Malformation and spinal CSF leak mimic some the same symptoms. But a spinal CSF leak was not on my doctor’s radar. Within 6 weeks, I was having my first surgery for Chiari Malformation.
But after the surgery, I started feeling my familiar head pain coming back. I called my surgeon and he said that there was no way my head pain could be related to Chiari. I did lots of research and found a different doctor, another Chiari expert, and this doctor immediately sent me for a blood patch.
He also indicated to me that I may not have had Chiari Malformation in the first place, and that having had this surgery may have complicated the healing of my underlying leak. The blood patch did bring me some relief but two months later, the head pain started up again.
Another troubling symptom I had was coughing/choking, when that would happen, it would send me into the most devastating pain, one where I would forget to breathe because I simply could not figure out how to control the pain.
From 2016 to 2021, I went to three different hospitals looking for confirmation of a spinal CSF leak, and each time, no leak was found. There wasn’t a lot of compassion from these doctors. Finally, in desperation, I called a specialist center. After receiving all my records and reviewing my case, I was able to be seen in January 2021,
I had an MRI of the brain and spine, which looked suspicious for a leak, and so then I was scheduled for a DSM, performed on my right side. And that’s where the doctors discovered that I had a CSF-venous fistula. When I heard this, I was in tears. I had been ready to give up, and now I was so relieved that I hadn’t.
How was your spinal CSF leak treated?
I had an onyx embolization. Afterwards, things were good and I was slowly trying to get back into the swing of life. Once it was safe for me to do so, I began doing light circuit training with body weight and very light weights. But by that evening, my head pain was back, and it lasted for three days. I knew I must have another leak. I went back to my specialist immediately and this time had DSMs done on both the right and left side of spine. Four CSF-venous fistulas were found in total, something I’m told is very rare. After a second round of embolization, I was sent home, and I’ve been symptom-free for three months.
Living a spinal CSF leak story
What do you wish doctors knew about spinal CSF leak?
I wish we knew why leaks happen, or how to prevent them. Also, I wish doctors knew that just because they don’t recognize something on a scan, that doesn’t mean their patient doesn’t have a leak. When my first CSF-venous fistula was found, my doctors told me that the leak had actually been visible in some of the tests I’d had a year earlier. But my doctors then hadn’t been able to spot it.
What’s the most frustrating thing about living with the condition?
Right now I’m most frustrated with my hesitation to do anything that might produce a leak. I worry about doing yard work, yelling at my daughter’s volleyball game, lifting, exercising, anything that puts pressure on my spine. It’s hard thinking about limitations, and I feel weak because I’m afraid to do anything. I’ve never been afraid of hard work. Every time I cough, my family freezes to see how I will react. If I lift something that might be too heavy, my children rush to take it away from me. They saw me suffer for years, and of course they want me better. I am so blessed to have family and friends that prayed and cared for me.
What helped you cope?
My family’s tremendous understanding and patience. There were many times plans were cancelled or where my husband had to step in for me, and we eventually had to take a very low key approach, knowing what I’m capable of or not. Sadly, it became a way of life, but we all kept a positive attitude. I wasn’t going to let this beat me. I kept looking for answers.
Looking to the future
What are you hopeful about?
I’m most hopeful to be fully healed. That I can learn to be the “Kim” I once was, not to be stricken with fear.
What’s your new “normal”?
Since it’s only been 12 weeks, we are still taking things slowly. I’ve been able to do more cooking, go to events, be on my feet all day, do small projects, and just live life.
Do you have any words of advice for people affected by spinal CSF leak?
To be as educated about this condition as much as possible and don’t give up. Ask the questions. This condition is becoming more and more well-known, so diagnosing and treating a leak is (hopefully) getting easier. It’s possible you won’t have to suffer as long as I did but knowing that treatment is there is immeasurable! Have compassion for yourself. Every patient is different when it comes to pain tolerance and how they are affected by spinal CSF leak. Come together to support and encourage each other.
What are your plans for the future?
Honestly, I’m feeling cautiously hopeful and I haven’t looked too far ahead. Three months of being healed is small compared to years and years of head pain and then a surgery I didn’t need to have and struggling to get the correct diagnosis, so I’m really a “one day at a time…..with faith” kind of person right now. My mind is clearer and I’m just trying to enjoy my “joy” of pain-free days.
Further reading:
See our Patient Stories page, where you can watch videos and read narratives of people’s experiences with spinal CSF leak.