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Monday, February 21, 2011

Why you should obtain copies of your medical records and testing results; or, A Lesson Learned the Hard Way

When I lost my health insurance and could no longer continue seeing my primary doctor of 13 years, I had to start seeking treatment at a Texas Tech and our local county hospital. I requested and obtained copies of my medical records from my former doctor, going back 8 years or so, so that my new doctor would have my medical history and could have them inputted into my electronic records. On Saturday I received my hard copies back in the mail and started reading them.

It was then, and only then, that I learned the truth of what was going on with me.

After my car accident in April 2007, I had various CT and MRI scans of my spine. Though I knew something was wrong with me, particularly in my neck, my orthopedic surgeon and primary doctor assured me that the scans came back showing nothing. It seems they lied.

According to my MRI and CT results, I have the following conditions:

  • Spondylosis (arthritis in the spine)
  • Loss of cervical lordosis (loss of the forward curvature in the neck)
  • Mid-thoracic dextroscoliosis (spine curvature to the right)
  • Hemangioma at T2 (a build-up of blood in my T2 vertebrae)
  • Significant diffuse disc bulging at C4-C5 and C5-C6 (according to what I've read, diffuse bulging is the worst because the discs bulge in a way that presses and impinges the spinal nerves)
  • Spondylolisthesis at L4-L5, which I previously had corrected in 2003 with a double-level spinal fusion (though the scans show that the instrumentation is still in place and does not show signs of movement) 
Imagine my shock in finding out these diagnoses almost 4 years later. Of course, I had to google a lot of it to find what it all really meant. But my doctors should have discussed these results with me! I am at a loss as to why they didn't, even after I tearfully and emphatically claimed there has to be something wrong with my neck because I could feel it!

Could these significant diffuse bulging discs be the cause of all my unrelenting headaches? My Trigeminal Neuralgia? From what I've read about them, they are most definitely the cause of my neck, shoulder, arm, and hand pain. Had I known about them in 2007, when the scans were done, I would have discussed options with my doctors; and I almost certainly would have opted for corrective surgery, even if that meant a cervical spinal fusion. I knew there was something wrong. I just knew it.

Instead I was slapped with a Fibromyalgia diagnosis. I knew even then that there was an underlying cause of my Fibro, and now my intuition and pain have finally been validated. I just wish that I knew then what I know now.

I trusted my doctors emphatically, as I had a very long doctor-patient relationship with each of them. In fact, the orthopedic surgeon was the one who performed my back surgery in 2003. However, now I feel they betrayed me and my trust by keeping these results from me. My mind has been working overtime trying to give them the benefit of the doubt because there was no reason not to tell me. Maybe they didn't read them, and instead just filed them in my medical records. Maybe one doctor thought the other would discuss the results with me. Maybe, maybe, maybe. The fact remains that I had to obtain a copy of my records to find out the truth.

Now I'll take these results, these truths, to my new doctor and pain management specialist to ensure they have read them - that they know them - and start a true path towards recovery. I'll still opt for the cervical spinal fusion if that is an option, as I would even go so far as to cut off my own head to relieve this pain.

This changes everything.

So let my hard-learned lesson be an easy one for you: get copies of all your MRI, CT, x-ray, and blood test results for your own files. Read them. Learn to understand what they mean. And if an issue is not being properly addressed by your doctors, regardless of how long they have been your doctors, get a new doctor.

Gentle hugs,
Jessi

Friday, February 18, 2011

Book review: How to Be Sick




How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard



This is a truly inspiring book. Though I'm not a Buddhist, I found the coping practices discussed to be very helpful. This book was a true eye-opener in that it made me rethink my approach to being chronically ill and my way of thinking in regards to the drastic life changes that were the result of my illnesses.

The practices discussed are in no way easy, but neither is dealing with a chronic illness. But they really made me stop and think about the way I think about my new life dealing with a chronic illness. I would list some of them here, but I urge you to read this book and gain your own insight, without the bias of having read mine, and see how it can help you.

I would highly recommend this book to anybody who is, knows somebody who is, or is a caretaker of someone who is chronically ill.

If you click on the book, the link will take you to Amazon.com where you have the opportunity to "look inside" and read a little bit before you buy it.

If you've read the book, I would love to know what you thought of it!

The author also has a website at howtobesick.com.

You can also read my friend Sarah's review here: Sarah's Life - Living With (And Beyond) Fibro: "How To Be Sick" - Review and Quotes

Gentle hugs and happy reading!
Jessi

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