Matea Kokorovic - Burlington, On
My CSF leak journey began in February 2022. I was a healthy, 31 year old working full time. I was also yoga enthusiast, practicing and teaching power yoga. My husband and I had just bought a home and we were enjoying our beautiful new space with our German Shepherd puppy.
I started getting neck pain in February. I thought it was coming from awkward sitting positions, so I didn’t think much of it. The pain was situated at the base of the back of my head and at my occipitals. I was constantly massaging my neck in hopes of getting some relief.
For the next 8 weeks, I visited countless practitioners to get help. Massage therapy, osteopathy, acupuncture, physiotherapy, chiropractors…nothing helped. The pain got so bad that I ended up at the emergency room twice. I remember the first time I went to the ER. I had to lie on the floor because I could not keep my head up from the pain. Despite the severe symptoms I was having, I was told that I had a musculoskeletal issue that would take 6-8 weeks to resolve. I was prescribed muscle relaxants and pain killers. They, too, failed to provide relief. In fact, the only relief I got was by laying flat.
If I laid flat on my back, my pain almost immediately disappeared. By that time, I was in the most excruciating pain of my life. I could not put my head up without screaming from pain, breaking out in sweat, and experiencing terrible nausea. Going to the bathroom, eating, living and doing anything normal was almost impossible. I had no idea what was going on. Little did I, or any of the practitioners, know that I was experiencing a debilitating CSF leak.
After a few months of troubleshooting, some of which I can’t even remember, I finally approached my family doctor. At that point, I was able to lift my head up and be upright for a few hours a day. She immediately sent me in for scans. I’m so thankful that she flagged a few things - the amount of pain I was in and the fact that my head pain was positional. I was lucky enough to have my MRI done within the UHN network and was diagnosed relatively quickly with spontaneous intracranial hypotension. I was immediately ordered to go on medical bedrest and increase my fluid and caffeine intake. The hope was that the leak would be able to heal on its own. Unfortunately, not unlike many others, the conservative approach did not provide substantial relief. I was referred to an amazing team of CSF specialists in Toronto. I eventually went in for a blind blood patch in May 2022. The patch provided me with relief for almost a year and a half.
I was almost back to normal. There were some points in time where I would experience pain, like after exercising or doing garden work, but I attributed that to just being my new normal. Although yoga had been such a big part of my life, I could not risk getting another leak so I decided to ride a stationary bike instead thinking that the straight spine on the bike would be a good idea. I was so grateful to have my life back.
Fast forward almost 2 years later, I started getting minor symptoms in my head and my neck again. The symptoms were nowhere near as bad as they were in February 2022, but enough for me to approach my CSF specialist. I was sent in for another round of scans, which ultimately showed that my leak was still there. I am currently in the process of undergoing more tests and looking at further treatment options to provide more permanent relief.
To say the last two years have been easy, would simply be untrue. Even though I was feeling much better, the trauma that I had from CSF leak was still present in my mind and body. I was very careful and very scared of doing anything that would make the leak worse or return. I think the scariest thing for me is the thought of going back to the level of pain I was in. I cannot think about having to go through that again, without experiencing severe anxiety and fear.
I am so grateful for my family doctor for flagging my symptoms. I wish that the other practitioners that I saw were able to identify the very characteristic symptoms I was having of a CSF leak. The positional headache, the stiff neck, and ringing in the ears are hallmark symptoms of a leak, and they were missed by several medical professionals. To no fault of their own, this condition is very rare and it’s not something that is being regularly taught to doctors. I’m hoping that this will change in the near future so that others don’t have to go through the same experience that I went through. I am grateful to have had a workplace that was accommodating and a family and friends that were helping me through this. Without the support system coping would have been much more difficult. I also joined a few online support groups that have been helpful in making me feel less isolated. I’ve also tried keeping up with all the new studies coming out from CSF centres, highlighting new advancements in the field. It looks like the field is gaining some momentum and substantial improvements in research have been made in the last few years.
Today, my new normal, and my current normal is functional. I am avoiding any strenuous activity or exercise because it exacerbates my symptoms. I’m taking care of my physical health by trying to walk as much as possible. I know that this too shall pass and that one day I’ll be back on the bike and doing handstands in yoga. Until then, a more simple life at home with my husband and dog doesn’t sound too bad either.