I am blown away. As per the recommendation (or insistence) of my general practitioner, I have called a new neurologist. Of course the number I was given wouldn't take me to an actual person so I decided to go on the hospital's website and find the correct number. The doctor appears to be very knowledgeable in all forms of neurological disorders. There on the list of his special interest were IIH (Idiopathic Intracranial Hypertension) and Pseudo Tumor. Both terms I have become well acquainted with over the last four years.
At the bottom of the page is a link for an article written by an older woman about her experience with hydrocephalus and her life up until receiving her shunt. I don't know why but I am literally shaking after reading her article. Yes, her diagnosis is slightly different than mine and yes, she received the other (more dangerous) shunt operation. But her experience, the emotion in her story rings so true. It is the same story of how important patient advocacy is and what it feels like when no one takes your symptoms seriously. It is a battle of going to doctor after doctor, each telling you there's nothing wrong. Barely being able to sit up, wearing sun-glasses because the light hurts your eyes and puking into a bucket when you haven't been able to eat in days. Yeah there's nothing wrong. The Cat Scans, the iv's, the Percocet. Not helping. Making things worse. When all you want is to be dead so the pain will stop. A miserable existence.
And then one day, you get this amazing test called a Spinal Tap or Lumbar Puncture. The doctor pushes into your lower back, trying to locate the right bone do shove the needle in. And then, after some misses (quite the painful experience), he finds the right spot in between the two vertebrae and second later, spinal fluid starts pouring out. There is so much fluid that he calls the nurse over to bring more vials to catch all the fluid. And then it hits you. Relief. You can tolerate existing. It is a moment of clarity. Of sheer happiness. No pain. No vomiting. Serenity. And then minutes after he's done, the pressure returns. Tolerance is instantly gone. Suffocation returns. The death wish arrives. Then, you get sent to get the Tap done laparoscopically. You get rolled into the room and you feel barely-conscious. After a few minutes of this extremely large needle positioned in your back, you become animated. You notice the nurse's crocks, comment about a house refinance another nurse is talking about, crack some jokes and get everyone rolling. Thirty minutes of pain-free relief.
I'm not sure why I am reliving that specific moment. But I don't think anyone can understand such relief. You know you have a problem when you crave a spinal tap. Any time I have spoken to med students or doctors and shared my love for LPs, they always look at me incredulously. It's so worth the pain of going through the procedure. It's worth the leg tremors, the zapping throughout your whole body. It's worth the possible paralysis. Anything for the momentary relief.
Fast forward three years and you are once again on the gurney, being wheeled into the emergency room. Symptoms are back. Different state. Different hospital. Limited support system. But it's back. The vomiting. The vision loss. And this time you know. You tell the doctor that all you need is an LP and all will be well. You are craving the release, as if it were a chocolate bar. And this time, you make your own decisions. It is your life, your choice. You refuse to be put back on the meds. Refuse the side effects. You choose a quality of life, no matter what the (literal) cost. You choose the surgery. You are your own advocate this time. No one can talk you out of what you want. What you need.
A shunt was the best decision that I ever made. Yes, it was my choice. And while I'll probably pay the price for the rest of my life, at least I have a life. I'm am free. Pain free. I am functioning. The fluid in my brain no longer controls me. It is being managed. And no one makes decisions for me. No one tell me how to life my life. So now, I wait for the office to call me back. And I will go in to see the neurologist. This time, I have knowledge on my side. I have my story in my pocket. I will walk in with my own two feet, by myself. There will be no gurney. No wheelchair. No bucket to throw up in. No sunglasses. Just me. Me and my shunt.
Take that! 1 in 100,000!
http://www.hydroassoc.org/ha-updates/looking-back-moving-forward-six-years-after-my-shunt-was-installed/
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