How did I get here?

— In January 2017 I was involved in a front end collision with a parked car (black ice on Nicollet Ave.) and was diagnosed with a concussion and whiplash. I underwent Concussion Physical Therapy at Tria and whiplash PT as well. But I never fully recovered. Over the next years I would be diagnosed with post-concussion syndrome and POTS, and would try a number of other specialty Physical therapy and Vision therapy in an attempt to heal. Nothing brought me symptom resolution because nothing addressed the very real physical injury to my spinal dura. 

Eventually, as I was reading through a Chronic Fatigue advocates blog post I quite literally stumbled across Dr. Ian Carroll and his diagnosis and treatment of spontaneous CSF leaks out at Stanford. So I did some digging, read his medical journal articles and his bio and I watched a lecture he gave. I became convinced this diagnosis was worth investigating further. I had all the hallmark symptoms of CSF leaks. Positional headache (worsens upon being upright), Light sensitivity, Torsion in my neck and unusual neck pain, tachycardia (racing heartrate), and many more. 

Tragically, none of my doctors considered a CSF leak a real possibility, and refused to even evaluated for a leak.  This is not uncommon, and is one reason awareness is vital!! When I brought up the possibility of a CSF leak to my pain doctor, she sternly scolded me for turning to Google and online medical information said flat out that I did NOT have a CSF leak, and I should just “trust my doctors”.  She did not ask me any questions about the symptoms I was experiencing, or why I thought I had a leak. So convinced was she that it was an impossibility. My EDS specialist was luckily not so dismissive, but could not perform the necessary imaging herself. So convinced was the radiologist that a CSF leak was impossible and would never be found, he refused to do the imaging the doctor had ordered.  so my  EDS specialist helped me advocate and sent my records to Stanford where I had the possibility to get the correct imaging and treatment performed. . . 

That referral was in January of 2020, 3 full years after I began experiencing symptoms of a CSF leak. By July of 2020 I had a diagnosis, but still I needed special approval to receive the correct imaging procedure and accompanying surgical treatment. Of course everything had slowed down to a crawl due to CoVid and the next wait was a long one. Finally, In April 2021, I had my first surgical treatment to patch the leaks performed at Stanford Uni. What a difference that made!  

But the 3 1/2 years it took to diagnosis were the worst pain and suffering I have experienced in my life, and that is saying something. The last year wasn’t so different except that I had an idea that I might not feel this way forever. And 4 1/2 years to treatment is not uncommon for Spontaneous CSF leakers like myself. Even now my journey to healing isn’t quite over yet. 

After my patches were done I returned home to MN and for the whole month of April 2021 I was feeling better! I was able to sit upright and stand up as long as I wanted without headache and symptoms. My patches were 4/6 weeks into healing and all was going well. . . That is until I got rear ended on May 3rd. The collision reopened the leaks just one month after having the patch treatment performed. Devastating results to be reliving the physical symptoms and leaking again so soon.

But unlike the first car accident that originally caused the leaks, this time I would not have to wait around in the unknown. I don’t have to imagine this feeling might last forever. I know what is wrong with me and I know what will help. Now it’s just a matter of travel logistics. There is a silver lining! 

IT’S FINALLY HAPPENING! This year I got the best Valentine’s gift ever! I was approved for an appointment for a spinal tap surgical procedure with a neurology specialist at Stanford University. After a year of working just to earn my initial appointment with Dr. Carroll last July, now my journey to recovery is getting started in earnest. My appointment is April 1st! 

Now I just have to work out travel ✈️  hotel and all the rest of the details! Thanks for all the support each of you gives me in ways that are not financial. Support you have given me and continue to give me when I am feeling most alone. Any amount of financial support is appreciated and will go toward paying off my travel and lodging costs that are unfortunately not covered by health insurance. Thank you for your support in this exciting and difficult time in my journey to better health.

My Medical Mystery Solved!

Doctor Ian Carroll at Stanford University is a pioneer in the field of pain and neurology for his groundbreaking treatment of spontaneous Cerebral Spinal Fluid (CSF) leaks. 

His innovative approach is a new treatment protocol for people like me. Hyper mobile EDS-ers who have chronic CSF leaks due to genetic predisposition and skeletal structural damage that has gone undiagnosed and unrecognized not to mention untreated often for years. Treatment of someone like me, without known epidural puncture from a previous medical procedure with an Epidural Blood Patch (EBP) treatment is so cutting edge in cases like mine that it is only available at a handful of Research hospital locations. Mayo Clinic for instance, only studies it, writes papers and fund’s research, they do not offer much in the way of clinical treatment options. Duke University and Cedars-Saniai are a couple of other locations that even offer this.

Being lucky and tenacious enough to get the appointment, now I must travel to Stanford university to have the surgery/procedure performed. It is simply not available in state or even in the Midwest. It’s not that the procedure is rare or cutting edge in and of itself, many women develop a short term leak after epidural prior to child birth. It is well recognized and readily treated with epidural blood patch. The part of the procedure that is cutting edge, is having a doctor take a risk to believe the patients symptoms are real and are a result of undiagnosed CSF leak, and being willing to treat it as such. 

I have already traveled to San Francisco once to be seen at Stanford last July and was officially diagnosed with multiple CSF leaks. After returning home I began the waiting period for my turn to come at the neurology conference where doctors reviewed my medical case ans votes on whether I was a good candidate for the Epidural Blood Patch. The process seems to be full of what I call “hurry up and wait”. Now it’s all happening very quickly it seems!