Sara Bohling's CSF Leak Battle

Here is Sara's story, in her own words:

"History: It all started in January, with flu-like symptoms. This progressed into an excruciating headache with pain radiating from the base of my skull all the way down to my tailbone. With all the lab work, CAT scans, etc. coming back as normal, they made the assumption it was viral meningitis and told me it would take months to heal.

As the weeks went on, my condition deteriorated further. I was now on complete bed rest 23 hours per day- only able to be upright 5-10 minutes at a time, to go to the bathroom, enduring the pain, so I could get back to laying flat. I was also incredibly sensitive to light and sound. I stayed in my bedroom with blackout shades- all day and night, I had to wear my sunglasses inside, even a night light was too bright for my eyes, and the slightest sound, like the microwave beeping, was enough to send me over the edge. I spent the next three months in this condition. Unable to spend time with my husband or kids, having to eat all of my meals laying down, and missing multiple school functions and family events. I saw a few physician specialists during this time, and nobody was able to pinpoint the reason for these dramatic symptoms. I continued to decline and eventually ended up to the point, where I was crawling to and from the bathroom. It was a traumatizing, terrifying, and brutal time!

Diagnosis: After consulting with a 2nd Neurologist- he came to the same conclusion that I had discovered online a few weeks before. I was diagnosed with a spontaneous cerebral spinal fluid (CSF) leak, causing low pressure in my brain. This is condition is where the fluid held in and around the brain and spinal cord, begins leaking out of the protective sac; for no apparent reason. Typically CSF leaks are more common in women who get an epidural for labor, someone who recently had an epidural steroid or pain injection or even spinal surgery. However- since I had not had any of those events even remotely recently, mine was considered spontaneous. So, the symptoms I was having were those of a repeated brain injury, every time I stood up- as my brain was sagging downward due to lack of fluid.

Treatment: The treatment plan for this condition is a procedure known as an epidural blood patch. Sometimes surgery is also needed, if the blood patch attempts fail to repair the leak. A blood patch is performed by taking blood out from the arm and inserting it into the epidural space in the spinal column. The blood then fills the spinal column and brain, with the hope that it will seal the leak and healing will begin.

This is what happened with me. I was fortunate to have success with my first blood patch. Some people require 10+ blood patches before their leak is sealed! Recovery from the blood patch procedure is slow and steady- there are strict physical limitations as well as trying to regain mobility after months of straight bedrest.

Compliations: While I am incredibly thankful that my blood patch has been successful- I am suffering a complication known as Rebound High Pressure. Because I was leaking spinal fluid for months, my body started to overcompensate and make more fluid. When the blood patch suddenly stopped the leak, my brain has not made the switch to reduce the amount of fluid it is producing yet. This causes a new set of challenging symptoms. Like deep sinus infection type headaches - which are excruciating, visual and hearing disturbances, nausea, extreme fatigue, the list goes on. While I am working slowly to recover from this illness, it is a very slow process. 

Recovery: While I am working slowly to recover from this illness, it is a very slow process. I have good days and bad days, while I try to inch my way back to being an active and functioning mother, wife, and person. I have been advised to compare the months for signs of progress & improvement, rather than the days. 

Prognosis: This entire journey has obviously made me have to stop doing a job that I love and am passionate about. I haven't been able to work at all in 2017. Caring for NICU babies and helping NICU nurses, will always be near and dear to my heart, and I'm hopeful to return to that role someday. I But I have to let my body heal and recover - it's a possibility that I may never recover to the point of caring for NICU babies again, only time will tell.

In the meantime I have exhausted all vacation, sick, and personal leave. My short term disability ran out as well. I applied for long term disability, but my case was denied. Apparently it is very common to be denied the first time around, so I am now on unpaid leave status from my job. That means we go from operating on a 2 income household (which we have budgeted for) to a one income household. We are fighting the denial decision, but have to hire an attorney and go through the legal processes. 

In addition to the grouwing pile of medical bills, we have to switch insurance companies due to loss of coverage for myslef and the girls, after the exhaustion of my short term disability staus. Switching to the new comany means a new deductible...etc. 

While I remain hopeful, and have faith that I will slowly continue to heal, there is a real possibility that I could start to leak again at any time or have a leak in a different location. If that were to happen, I would need to travel to a CSF leak expert MD across the country for medical care and treatment. I also don't have a concrete idea of when or if I will be able to return to work. We have a goal date set, but we'll just have to see how my body continues to adjust and recover fromt his life-changing experience. 

While donations to this fund will go to help support my family and medical needs during this difficult time, my ultimate goal with this page is to raise awareness and provide education regarding CSF leaks. My hope is to prevent even one person from the suffering that is involved with a leak diagnosis. 

We are humbled to ask for help during this time, but we know there are many people who have asked how they could help."

Please help in any way that you are able. Every little bit makes a HUGE difference! Let's help Sara and her family find "normal" again.

With Gratitude,
Josh (and Sara)
  • Anonymous 
    • $100 
    • 45 mos
  • Sheila Glathar 
    • $50 
    • 51 mos
  • Anonymous 
    • $50 
    • 51 mos
  • Capitol HVAC 
    • $250 
    • 51 mos
  • Johnstone Supplu 
    • $2,000 
    • 57 mos
See all

Organizer and beneficiary

Joshua E. Young 
Omaha, NE
Sara Bohling