My name is Lori. I have created this log to let anyone who may be interested in back injuries and how the U.S. medical profession treats someone that presents with a back injury. Many of the posts here have been posted in other blogs, as letters to medical professionals, columns and newsletters I have written for various other medical websites over the years. I feel the necessity to share my story as I feel that many can learn from my experiences, both laypersons and medical professionals. Also, if I had had not taken it upon myself to advocate for my own well being, and simply accepted what I was was being told by doctors as gospel, then I would be in far worse shape than I am today. I hope that my story will inspire medical professionals to take their CME requirements seriously, to actually listen to what patients tell them, and to not just leave the “Googling” to frantic patients looking for someone to listen, to them, offer help, hope and care.
This first writing was posted on 08:54PM (EST) on 2007-02-22.
It all began on a hot, humid May day in Hampton Virginia in 1997 (is there any OTHER kind of day in the southern part of VA?). There is a tunnel that is basically the only way for people to commute between the Hampton and Newport News areas into the Virginia Beach and Norfolk areas.
Down there in the South, people are generally afraid of tunnels, so, they S-L-O-O-O-W-W-W down near the bottom, for absolutely no reason. So, I am on my way to work from Hampton to Norfolk and I am slowing down (as usual) and I am now at an almost complete stop watching the woman in front of me fussing with her “I-get-it-done-once-a-week” hairdo, when I check my rear view and catch a glimpse of a yellow object speeding towards me. Knowing this object was not going to stop, I turned, faced straight ahead, and waited for the impact.
The object (which I later learned was a 1977 Dodge pick-up) hit me so hard that it lifted the rear end of my car up and set it down sideways, opened the trunk, and left a nice clean imprint of his license plate in the rear bumper. Due to traffic issues in the 2-lane tunnel, we all kept moving until the end. And what was the first thing the guy says to me??? “Sorry, I was only going 50!” ONLY 50?! The rest of us were going about 2MPH! I had immediate back and neck pain, so off to the hospital I go, yadda yadda yadda. X-rays show nothing. (They never seem to initially.)
2 weeks later I can barely walk. So I go to a chiropractor. He puts me on this table that stretches me which makes the pain worse. Due to a “language barrier” I don’t think he understood what I was saying.
2 more weeks pass, and I’m in an orthopedic docs office. I get a CT scan and an MRI. And what do they find? A torn disc at the L5-S1 level allowing the annulus, which is the inside portion of the disc (think of the gooey part of Freshen-Up gum – the gooey part is the annulus) to ooze out.
LUCKY for me (and I mean this sarcastically), the doc I am seeing is doing an FDA study for prosthetic disk nucleus implants (herein referred to as PDNs) which are supposed to be better than just removing the disks or fusing the vertebrae.
In November 1997, I was the 1st person in the U.S. to have the PDNs placed. In May 1998, I was the first person to have them removed – they migrated out of the disk space, crushing the nerves on the left side of my spine. At the time of removal of the PDNs, I was fused at L5-S1 with titanium Ray Fusion Cages, and I resumed my usual workout activities in about 3 months, even though things never felt “right.”
Pain in my back and legs began to return in about a year.
I moved from VA to Boston. I thought GREAT! Cutting edge medical care (no pun intended). Nothing could have been further from the truth.
As I bounced from doctor to doctor (fearing the “Elaine Bennis” syndrome), I was told nothing was wrong, it was all scar tissue, I needed antidepressants, etc. I even had a HARVARD professor and head of a certain large HMO (who shall not be named here) tell me I was “exaggerating my pain” and there was absolutely nothing wrong. He said he had never seen fusion cages (has this guy had his head in the sand for the past 20 years, or what?) and gave me 800mg Motrin for the pain.
So I take an Amtrak trip to see my old surgeon in VA to have him look at me to obtain a referral to a colleague in Boston. For some reason, doctors do not want to see patients who have been in car accidents (Even though my claim had been settled back in 1999). After jumping through the MRI and myelogram hoops (Brigham & Women’s Hospital screwed the myelogram up – giving me a dural leak, and then further messed things up by not doing the blood patch correctly which was supposed to fix the botched myelogram, but that is another story.) I see my current surgeon, who took ONE look at my MRI and said it was SO OBVIOUS that everything was not in place in my lower back.
Back Surgery #3 was 7/15/03 – My entire lower back was restructured (I even think I am taller!) and I received what I like to call “cabinet hardware” (rods & screws). I also had some bone marrow scooped out of my right hip and packed around the fusion site. (No, I don’t set off metal detectors at airports!).
All is great – right? NO! In November, as soon as I get back to work, I start having severe pain, weakness and numbness in my right leg. I underwent more tests (the worst – the EMG – I think that the Nazi’s invented this one – actually, they did!!! according to my neurologist) and it showed acute nerve damage, which meant more problems. And my spine did not fuse. Again.
Which means… Back Surgery #4 was 7/20/04. My surgeon redid my hardware (I have all new stuff now (the Terminator better watch out!) he scooped out some marrow from the left side of my hip. He also packed some synthetic bone protein (BMP) around the site for good measure!
4 months post surgery I am noticing odd hamstring pain on the left side, radiating from the surgical area. By 4pm I useless – the entire surgical area feels bruised and tender. I am in dreadful pain by 1pm daily, I can’t think straight or concentrate. Imagine me – trying to hold down a job with this going on! I have to lie down to relax the nerve when it gets too painful – wherever I am. A myelogram (done correctly this time at New England Baptist Hospital) shows nerve damage at the S1 nerve root.
I undergo a series of IV “lidocaine challenges” through the Pain Clinic to see if I can tolerate oral lidocaine, which promises to block the unrelenting nerve pain. I can tolerate it and start a course of Mexiletine, which is nothing short of a miracle drug for me as it really does block the horrid paid from that damaged nerve! Too bad it doesn’t help the pain on the right side that developed in late 2004. To date, no one can figure out why I have it. Speculation is more nerve damage, as trigger point injections occasionally help.
In May 2005 I started my “last ditch effort” to rid myself of the pain and join the New England Baptist Hospital’s well-known “Back Boot Camp.” It is based on the theory that we have been taught to baby our backs and that this mindset has led to muscle weakness and imbalance and thus, more pain. The program is tough and encourages participants to build back muscles. However, there seems to be some nerve in my back that doesn’t like what I am doing. After going to boot camp for 3 weeks, then developing a “new pain” and leg numbness for 2 days, I call it quits.
So…it is now February 2007. Yes, I have not updated my story – above – which was part of a newsletter that I wrote for the website, RemedyFind.com. Where am I at with all of this? Well, I started a job in January, and have been managing to work full time without major complications. How is this possible? Well, my PCP was very concerned that none of my specialists were taking my pain seriously enough – he saw me getting more depressed, anxious, and run down – and prescribed (finally) the fentanyl pain patches. Through the miracle of these transdermal patches, I can actually lead a somewhat normal life as long as I wear the patch. I am still searching for a solution to the cause of this continued pain – stay tuned, as I think I have a lead…