I just returned from a week long visit from Mayo clinic for a Cerebrospinal Fluid leak blood patch.  This was attempt number 5, well 18 actually.  I’ve had 18 blood patches, 12 targeted and 6 blind.  What on earth is this all from?  How did this happen and where do you go from here?  Yes, those are the questions I get asked but honestly those are the questions I ask myself.

My entire life changed with in late February/early March 2020.  Yes, 2020 – it was a horrible year for everyone.  My husband and I, along with our kids all traveled to meet my inlaws for a fun weekend away Valentines 2020.  We all stayed in a nice hotel in Fayetteville, Arkansas.  We ate dinner out and even did some axe throwing (not at each other of course.)  I had not really been feeling my jovial (yes, I happen to be a very jovial person) self the entire weekend but not wanting to be the Debby downer really just pushed through the yuckiness I was feeling.  I did end up with a headache the last night and went to bed early letting the others enjoy time together.

 We had a great visit and when it was time to head back home we all went our separate ways.  My inlaws and nephews headed back to Eastern Arkansas.  My oldest and her husband in their car and my husband and our two youngest in our car headed back to Missouri.  We had lived in this area previously and we were enjoying seeing how the area grew.  We were about 20 minutes into our trip when suddenly I was struck by horrible side pain and knew immediately it was a kidney stone.  There was no way I would make it home and so we shuffled the youngest with the oldest to continue home and we headed to the local Emergency Room.  The worse part of this story still in my mind is that as we got almost to the hospital I knew I had to vomit.  My husband pulled over as fast as he could.  He ran around to my side and opened my door just as I turned my head the other direction and vomited all over his 2 day old truck.  Yep, brand new truck and instead of just turning my head to the right and vomiting out the door, I turned my head to the left and vomited all over the truck.  Still to this day I have no idea why and I still feel so guilty.  He was great though, loaded back up and went the last block to the hospital.  As I suspected, it was a kidney stone.  After being hydrated and medicated they sent us back in the truck to head home to our own local hospital.  I have no idea if this kidney stone and the following surgery had anything to do with my leak but it was directly after this that my symptoms began.

After getting home from surgery and settling in to rest and recuperate I ended up developing a pretty significant bilateral pneumonia.  Mixed with a small untreated bladder infection that had been going on I again ended up in the hospital two weeks later.  During that last few days before finally going to the hospital for the pneumonia I had noticed a strange headache.  It felt like someone was squeezing all the blood out of my head and it was building pressure so bad along this horrible “whooshing” sound in my ears.  The pressure would pulsate getting worse with each pulse and the noise from the “whooshing” was so unbearable.  I remember being in the emergency room at this point not as concerned about my breathing or bladder infection but this PRESSURE and whooshing that, THAT  is what my overwhelming complaint was.

I spend the next 7 days in the hospital being tested 4 times for flu because I was running a fever, my O2 saturation stayed in the upper 80%.  I had a headache, body aches and no appetite.  This was the beginning of the Covid – 19 pandemic and they really were not testing anyone for it unless you had specifically come in contact with a positive case.  I was not tested for Covid, but was basically guaranteed by my follow up physician that this is what I had.

This was the beginning.  It was from this point that my search for help with this  “postural upright” headache and “whooshing” (now diagnosed as a Cerebrospinal Fluid Leak) began. I returned home from my latest attempts at a repair one week ago.  I lay here in my bed full time again.   I will begin to spend my time going back to document my entire journey with you.