The Ordeal

After 27 years, I think I’ve figured most of this out, but then, I’ve been wrong before.

I am a member of a group of people, patients and supporters, small in comparison to other medical dilemmas, that are suffering some pretty difficult conditions and only able to get help at the university and teaching hospitals, where they research rare conditions. The kind of pain I deal with 24/7 most people have never had, except for those in this small group of people I’ve only known for 3 years of the overal 27 years.

There are physical injuries that never healed, but that don’t show up on tests, leaving me with no answers. I mean, part of this, I didn’t get until 24 years later. Part of this, I figured out 12 years in and scored a major improvement, but how it feels to suffer this particular ordeal is very lonely, stark, hard, omnipresent. It stareted with a 1-story fall.

What are the symptoms of a CSF leak?

When CSF leaks are small enough that they don’t noticeably affect your brain, you may not notice any symptoms or might mistake the symptoms for something else. When a CSF leak is large enough that it causes intracranial hypotension, you’ll have symptoms related to pressure on the lower areas of your brain.

The most common symptom of intracranial hypotension from a CSF leak is a postural headache, which means a headache that changes depending on your posture. A postural headache with a CSF leak worsens when you sit up or stand and improves when you lie down.

Taken from The Cleveland Clinic.

Spinal CSF leaks

The most common symptom of a spinal CSF leak is headache. These headaches usually:

  • Cause pain in the back of the head (Intense, always)
  • Improve when lying down (Yes, immediately)
  • Worsen when standing up (Yes, immediately + grows over time)
  • May start or worsen with exertion (such as coughing or straining) (Not really, for me.)
  • Rarely, start suddenly (“thunderclap” headache) – (My ‘headaches’ are more like blobs of pain like the blobs that rise in a lava lamp, I call it ‘liquid pain’)

Other symptoms of spinal CSF leaks may include:

  • Neck or shoulder pain (often Intense, always continuing)
  • Ringing in the ears (tinnitus) (I call it brain noise – and it seems forceful and far separate from my ears)
  • Changes in hearing (My hearing is farily good)
  • Dizziness (Light dizziness, farily frequent, still always able to compensate)
  • Nausea or vomiting (I have never vomited from it, but nausea can rise after a period of being upright. Putting my head down reverses it.)
  • Changes in vision (Yes)
  • Changes in cognition or behavior (I don’t think so other than what 30 years of untreated chronic pain will do )

The above list repeated from Beacon Heath Systems page.

Other symptoms that I’ve experienced:

  • Shifting in the structure of my Skull. (I must re-align in a very difficult set of maneuvers)
  • Interscapular Pain (This is my signal that I’ve pushed too far, i back off, adjust, rest)

Early on, it cost me my best job ever, and then, with no diagnosis, I fell through the ‘Safety Net’, you know, it doesn’t cover 100% of the people who really needs it, and no one tells the story of those who really needed it but couldn’t qualify due to no diagnosis, or other impediments. I was treated like a profitable patient while I had insurance. I had the best insurance ( supposedly ) that was available in Florida. They paid the bills until my ability to work ran out and then no insurance, no medical care. I was still horrible debilitated from the kind of life I lived before. No one knew. No one cared enough to really understand. It was more like they didn’t want to hear it. I can’t blame them. I know many who have experienced permanent family splits over it. They might understand if they knew how the way this impacted me is very unique and detailed, so I started a blog.

I have overcome this so many times to do things, yet, I could have done 10X the things, had I found a medical conndtion that got me. Instead, I need to put it all out here. I work hard to overcome from the moment I become upright.

24 years in, I found out there were “Other People Like Me”. The information they’ve given me and the friendships have been restorative. Now I wish to climb completely out of the hole.

I’m a Dad, a Musician, whose abilities have been affected by the Ordeal, yet, whose musical career was a way to work thorugh the Ordeal. I’m a Singer who temporarily can’t sing due to vocal cord cancer, I’m a Computer programmer who’se abilites are affected by the ordeal, but still, skilled at many things. I’m a TBI survivor, I have an undiagnosed Cerebral Spinal Fluid Leak (CSF Leak) 3 years ago I found my ‘leaker family’ online, hundreds of others who have suffered some of the same rare symptoms. For 24 years, I was alone with these symptoms. It’s a rare thing to be leaking brain fluid internally where they can’t find it or see it on an image.

What it does is cause increasing pain, a weird kind of pain, not like any other, when you are upright. Gravity is the culprit. If I lie down, my pain lies down. If the pain is high and I get down and hang my head to the ground, the pain dissapates in minutes. It’s pretty well confirmed to me by doing that, however, getting credibility for you own suspicions can be hard.

This story would take many hours for me to tell you. I believe that someone would have to observe me, and question my movements over the course of three days to truly understand the suite of symptoms I deal with. So I’ll just post here and there about living with it and if you feel me, say hello and read on. I’m going to try to make it prettier.

I have overcome a lot because I wear this positive attitude I think I got that from my Mom. 🙂 Have a good day.

Harvey