Day 23 of the WEGO Medical Blog Writing Challenge: Blogger’s Choice – How I saved myself

Posted: April 24, 2012 in about me, History, Medical Conditions, Pain, Research, Uncategorized

Or, How I have had to do my own research to get the medical attention I have needed to keep living…

1996: That autoimmune disorder that lurks, nameless still, in my blood, lymph and other tissues, that caused a life-threatening liver condition, would have gone unchecked had I not argued with my PCP and asked for an “autoimmune panel” from the lab. Ding Ding Ding. I was right. I learned about autoimmune disorders by going to the library located in my local hospital. Any may use these libraries, you just can’t remove the books from the premises. I would always start my research with a general text, then, move on to subject matter periodicals containing peer-reviewed research and reviews.

1997-present: The pain of the genetic anomaly in my nerves that was aggravated by a car accident in 1997 had been dismissed by numerous doctors by such triteness as “drug-seeking,” “imaginary,” “fabricated for secondary gain.” I did extensive research on the Internet – Google Scholar – (search terms “low back pain,” “buttock pain,”) and read every singe “hit”. I knew I hit pay dirt when found the name of a surgeon popping up again and again in my research. He had invented an imaging technique that utilized a regular MRI machine that specialized in peripheral nerve imaging, and even better, he was a neurosurgeon that fixed the problems he found. To follow his research, I created a Google Custom Search that would return all incidences of the doctor’s name (in quotes, of course), the name of his device,”MRN,” and the unabbreviated version, ” magnetic resonance neurography.”. Oddly, not a SINGLE doctor at the prestigious hospitals we have here in Boston had heard if this man, who attended Harvard himself. I lugged around a 4″ stack of his papers, of research from other countries using his techniques, of his carefully documented case histories and the successful surgeries using his techniques around the globe. After gathering his research for 5 years, my PCP read some of his papers and saw the light. He encouraged me to be seen by him and in 2009, I received my diagnosis – it was amazing to hear that I had an actual problem that I knew, all along, did not come from my spine as I had told the “blinder-wearing” doctor-bots since 1998. In 2011, i underwent a surgical repair of the congealed tangle that once was my piriformis muscle, and my sciatic, gluteal, obturator and pudendal nerves. A good-sized segment of my piriformis muscle has become atrophied and had to be removed. The best thing: I can now go pee again. If I had listened to the “specialists” around here in Boston that don’t believe in piriformis muscle nerve entrapment, I would be catheterizing myself 4 times daily to empty my bladder!!! That is a serious issue that is not only painful, but can introduce bacteria into your body that can rev fatal – as it was for my mother. I guess the docs around here didn’t feel that the fact i couldn’t urinate was a major CLUE something was wrong. Once again, I was right. And once again, my research skills saved me.

2003: I knew something was wrong with the attempted fusion of my L5-S1performed in 1998. Since my injury was caused in an MVA, for some weird reason, even though there was no litigation, no doc here in Boston would see me. I had to return to my prior state to see the surgeon, to get a referral to a classmate of his in MA. This doc – an orthopedic surgeon, took one look at my x-rays, (as I had done,) and immediately recognized a misplacement of the fusion hardware AND the lack of a fusion. It is nice to have a well respected surgeon agree with ME.

2004-present: Due to the severe and chronic nature of the pain I had in my right SI/hip/leg, I was put on a very strong opiate pain killer. I was on a combination of 4 other drugs prior. This drug gave me my life back, temporarily. Until 2007, I was almost normal. Now, I struggle to concentrate, tap into my creativity, to ever feel NORMAL. Yes, the neuroplasty of 2011 made a difference. But in the minds of my husband my PCP, I was expected to be off the meds and be back to work in a few months post surgery. ROTFLMAO.

Loris Basic Research guidelines:
1. Use basic terms, and plug them into a good search engine. I usually use Google.
2. Start with a basic informational site that will provide you with PROFESSIONAL LINKS. My choice, bar none: Wikipedia. Go ahead and criticize, but show me a better, plain language site that will blast you into the entrails of the disorder you are researching. Three aren’t any – don’t waste your time. And you you mention WebMD – remember who is sponsoring that commercial ate – the very doctors that are ignoring you, and telling you nothing is wrong!!!
3. Collect a list of key words and phrases related to your condition, then head over to MedScape and PubMed. Plug in those terms and watch in awe at the bounty of articles that address your issue. If your results aren’t hitting home yet, reevaluate your terms and narrow your search, change “nerve” to the actual name of the nerve – focus on the symptom in “medical-speak,” using words like urticaria (hives) or contusion (bruise).
4. Look for articles from the past 10 years – read the summaries – check out any interesting references, and repeat. Soon, you will start seeing the same articles being referenced over and over. The names of the researchers will pop up again and again. Choose an article or two that coveys the message you want your doctor to get, such as, “my symptoms are identical to those discussed here. Might this treatment/research be worth checking into further?”

I will ALWAYS take the time to help anyone research – it is what I was born to do, and it is what I have been doing for my entire adult life. Please feel free to contact me.




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