Half of the battle about being sick, is knowing what is wrong.
On 22nd Sep 2011 I had a ‘routine’ cortizone injection for a pain in my neck. From the next day, I had the most horrendous headache I could imagine. It went away while laying down, but I felt like I had been beaten by a baseball bat when I stood up. When the Doctor who gave me the injection tried to say it was a normal reaction, and it was “all in my head“, we googled my symptoms….
“Sounds like a Spinal leak” my Fiancé said.
Spinal leak sounded scary. Just scary. No one gets a spinal leak… I mean unless they are in a car accident, or a coma, right? Can I be fixed? Will I be able to stand for more than a few minutes again? What happens if I never get better? All these things played through my mind.. over and over and over again. The more we read about symptoms of a csf leak (the protective fluid around the brain and spinal cord leaking out) the more it sounded like my symptoms. Exactly. My brain was sinking into my skull, and I could feel it.
I went to several different Doctors and finally to a Neurologist who said ‘I needed to reset my brain chemistry’. My Fiancé just looked at me, seeing my frustration and said ‘We should leave, he doesn’t know what he’s talking about’. The scary thing was the Neurologist really didn’t, and this was someone who should know a lot more about spinal leaks than either of us. I was even asked by another Doctor if it was pre-wedding stress? I tried to remain calm, and hopeful, that he wouldn’t brush me off… “No, I’ve been through stress before, when I think about my wedding, I’m simply happy and excited. I’m not stressed at all”.
The fact was, that wasn’t true. I was stressed. Stressed about being sick.
I desperately wanted to have a child, to be a mother, a wife, and go back to work. Even be able to go to a movie or to dinner with my friends didn’t seem like much to ask for. I was only 32. I spent my 33rd birthday in so much pain with no idea why pain pills did nothing to help me, worried that this was now my life.
After weeks of trying to carry on as normal, I was unable to string a sentence together and ended up in the ER. I waited for 4 hours and then they treated me like I was crazy, and was sent home with a factsheet on ‘headaches’ and pain meds, that didn’t help. It was hard to remain my usual positive self.
Frankly, it was the worst time to be sick. Our wedding was fast approaching. Flights for family had been booked, deposits on our dream wedding and honeymoon had been paid for. I should have been fretting about how my dress was going to fit, which flowers I wanted, or which dance we would choose… Not whether I would be able to walk down the isle or not. Thankfully my husband was my biggest supporter through all of this and neither he, or my family doubted me once, or questioned if it was ‘just in my head’. That would have made things much harder for me, ESP with my family so far away.
That’s one of the hardest things I’ve learned about an invisible illness; it’s a blessing and a curse all in one. Looking fine from the outside, when people can’t tangibly see what is wrong with you, means it’s harder for them to understand. Even worse than that however, are when Drs tests come back showing everything is ‘normal’.
“You’ll be glad to know your brain MRI, cisternogram (the most painful test ever to detect leaks in the spine) and the ct scan are all normal”. No I wasn’t glad. I wasn’t glad at all.
I really believe that the next worst thing to finding out that you, or your loved ones have a terminal illness, is getting ‘normal’ medical test results over and over, when you KNOW things are far from ‘normal’.
I finally got a second opinion with a different Neurologist. He took one look at me, slumped down in his chair, and said ‘You really could have a spinal leak… to fix that we can give you a blood patch‘. FINALLY, I felt like someone knew what they were doing. They subsequently would inject a large volume of blood, from my arm, into my spinal cord to try to form a clot to seal the leak. I would go home and lay completely flat for 36 hours and then my leak would be gone. Unfortunately it wasn’t that simple. I was given 5 of these over the course of the next two months, each time the waiting was harder and I became more desperate each time when the headache would return. My Neurologist said there was nothing else he could try, but had heard of a specialist at Duke Hospital.
When it came to a visible location of my leak at Duke, in January 2012, I cried for joy when they told me they found the leak in my spine (at the exact point of my cortizone shot). I had been validated by a specialist Neuroradiologist and it confirmed why I was in so much pain. Also, it’s much easier to tolerate pain, once you know exactly what the pain is. The method to fix the leaks at Duke was much more accurate and from day one my patches held. I didn’t realize then that it would just be the start of a long healing process.
Yes, I got married with a spinal leak. I look back and wonder how, but I did. People say I was amazing. When you don’t have a choice you just get on with it, well I do… I get that from my Mum. It wasn’t the way I expected to feel on my wedding day, but I looked fine. In fact more than fine. I looked beautiful. With my hair and make up done so perfectly, it was hard to believe how bad I felt on the inside.
I still can’t bring myself to edit our wedding pictures, and I’ll never forget how I felt that day. What I will also never forget is that my husband married me when I was sick, and I could hardly walk. That to me that is the best gift I could ask for… Someone truly by my side, who loved me no matter what. A true test of ‘In sickness and in health’. Now that to me is amazing.