This is my introduction. I've considered joining a "real time" support group but all of them in my metro area are too far to drive. I can't even drive to my office at the moment, and it's only 15 minutes away. Fortunately, I own a very small company and my one employee is very capable and I am able to do what I can do (which isn't a lot at this moment) remotely.
So the long history, I'll make as brief as possible: Age 10 (circa 1980) - fell in a school tumbling/gymnastics program while doing a backbend. Landed on my neck, completely bending my head to parallel with the shoulder, basically blunt trauma to the neck caused by the floor. No medical treatment was given (my young parents were uninsured at the time). Severe pain persisted about a year, continued to worsen.
My parents by this time had insurance. I got x-rays and a CT scan, they couldn't find the reason I was in pain. Went through physical therapy (PT), heat ultrasound, TENS unit, etc. - none of the conservative management worked. Suffered for years; going through massages, PT, chiropractic, x-ray after x-ray, and so on - on and off. Nothing ever gave any real relief.
In my late 20's I went to a new chiropractor near a new house. I had never seen him before, nor had I described how my original injury occurred. I was checked in, seen by an X-ray tech, then waited to see the doctor for the first time while he reviewed my X-rays. He came into the room and said, "Have you ever had an injury where your neck was over-extended, like this (mimicking head to the side) and got a blunt trauma right *here* (pointing on his own neck to the exact spot). I was dumbfounded. "How would you know that?" He said, because that's the only way possible you could have fractured your neck right here, in this way. He showed me the X-ray. I'm not sure how that fracture was missed all those years, on all those X-rays and a CT scan when the injury was only 1 year old, 16 or 18 years earlier. However, at least I finally had an explanation for the pain.
Over the next several years I tried everything and the pain just kept getting worse. After three separate pain specialists told me that surgery was my only option (after epidurals, bi-lateral radio frequency ablation, MRI, etc.) I consulted with three surgeons. The one I chose is the head of neuro-spinal surgery at a renowned neurological institute/research hospital.
The MRI results showed that from C5 to C7, there was so much bone spurring that there was no spinal fluid in those areas. It was pinched off. The discs were pretty much gone; it was bone-on-bone-on-bone spurs. The spurs were squeezing my spinal cord so that on the MRI view looking down the spine, it should look like an O but mine looked like a D.
This explained all sorts of weird neurological symptoms I'd been having - bursts of light in my eyes, eye twitching, poor balance/falling, facial numbness ... in short, wondering if maybe I was a hypochondriac. I was relieved to know that it was all explained by the bone spurs squeezing my spinal cord, but terrified of the surgery. But again - I chose a world-renowned surgeon at a world-renowned hospital. (I waited six hours to see him for my initial consult. He was worth every minute). I had a fusion C5-C7 in December, 2011.
Unfortunately some of the nerve damage caused by the squeezing/spurs was permanent. There are also known "issues" in my thoracic and lumbar areas, which seem to be worsening. I was told when I was in my 20's that my neck looked on X-ray like someone in their late 40's. I was told by my spinal surgeon that he doesn't usually see this level of degeneration in people until they are in their late 70's. I know why the neck was like that (the injury when I was 10 yrs old). Don't know why the rest of my spine is degenerating like this.
At any rate, after surgery the pain was reduced by a good 90% on good days, 70% on bad days.
Over the past 2 - 3 months, my neuropathic pain has worsened. Went to my pain doc on Friday. Told him I'd started taking some leftover Lyrica I had from before the surgery, which had been prescribed by the pain specialist I saw before him. He doesn't like Lyrica. I don't either, for me personally. It makes me feel like I'm in slow motion, mentally and physically. It also makes my face very puffy, makes my lips and feet numb, etc. So he prescribed Gralise. He gave me two starter packs and told me to titrate half as quickly as normal. This is because I'm very sensitive to meds, I usually get the rare side effects that they only see in one out of every 10,000 patients. Oh, I should add, I cannot take most opiates because they cause me severe depression. The only thing I was able to take before my surgery was Nucynta. I didn't have any of the side effects from that one that I get from the other traditional pain killers.
So... after only one dose of Gralise (this past Friday) I woke up Saturday feeling great. The nerve pain down my leg, arm, and in my foot was gone. Saturday I had a fantastic day, hiking a bit (nothing strenuous), being outdoors and generally thinking, this is a miracle. I can walk without pain down my left leg! Whooo hooo!
Unfortunately, I felt SO GOOD on Sunday morning (after my 2nd dose) that I didn't try to get out of bed as I usually do - which is by rolling over on my stomach, putting my feet on the ground then standing up slowly. BIG MISTAKE. I tried to sit up from laying on my side and oouuuchhhh. Something in my neck went wrong. I couldn't turn my head at all, I was miserable. Heated/iced/heated/iced and maxed out on my muscle relaxers (Zanaflex) all day Sunday. Nothing touched the pain. Called my pain doc (who I just saw on Friday) on Monday (yesterday) and asked to get in again.
Turns out, I sprained my C4, right above my fusion. I got heat ultrasound, a Toradol shot, and a prescription for 4 more days of Toradol. I'm in pretty close to the same amount of pain I was in before surgery at this point. The Toradol doesn't really seem to be helping.
I have an MRI scheduled for this Friday, that was already ordered to look at why my neuropathic pain was getting so much worse. We believe it's because of the issues in the lumbar area. Now I have this new injury to my neck.
I'm so frustrated and I choke back tears all day. More from frustration than pain. I'm just sick of it. I'm sick of medication side effects. I'm sick of living in pain. I'm sick of taking one step forward and two steps back. I'm sick of needing my husband to be my personal waiter/attendant. He came home from work an hour early today because the more I move around to do normal things, the more I hurt.
I'm also sick of having surgery. Beside the spine surgery, I'd had six other surgeries on unrelated conditions by age 37. Ok, well, one of them was related. I underwent a breast reduction about 17 years ago, thinking it would give me some relief on my neck and back pain. At that point, they still had no explanation for my pain (this was before the fracture in the vertebra was finally found). It actually did give some relief. Not a whole lot, but I have no regrets. I think it helped in the long-term.
So... here I am. Frustrated, miserable, and wanting to kick holes in the walls - only not doing so because I'm in so much pain. Also - feeling like a complete and total whiner. When I sit in my pain doc's office and see the other patients coming in and out - I look like I'm in so much better shape than them. I tell myself, just suck it up, cupcake. But I'm sick of sucking it up. I'm depressed and tired and I have a business to run. All I want to do is lay in bed all day and cry. Also, I'm sick of people telling me, "I hope you get better." I want to scream at them - "I will never get better. I don't even remember what it's like to not feel pain." But I just smile and say, "Thanks."