Greetings to all. I hope you had a wonderful Thanksgiving Holiday.
As you may read from my profile, I am here because I am a caregiver to my wife, and we are learning to live with this disease. So I will summarize how we got here, and mention some of the questions for which I seek answers.
My wife, 68 years young, began noticing what we now understand as symptoms about four years ago.
It began with minor tingling in her left foot, sciatica on her left side, and lower back pain after sitting for any prolonged time. After putting up with the problems for a while, with the usual remedial steps of over the counter medicines but obtaining no relief, we consulted with medical professionals.
Several MRI and CAT scan review by a very highly regarded orthopedist here in San Diego resulted in a diagnosis of slipped disks and pinched nerves in the L3, L4, and L5 disk areas. We decided she should undergo back surgery, resulting in the repair of the area, and fusion of L3, L4, and L5.
The immediate result was complete relief of the pain, and disappearance of the sciatica. Unfortunately, during recovery, she contracted MRSA infection, and was subjected to 45 days of two large infusions of Vancomiacin every day.
Then, while recovering from that mess, she fell and broke her right hip.
After having the hip pinned, she began a regimen of physical therapy, and normal physical exercise. She also started experiencing aggravating issues.
The foot tingling spread to both feet, and numbness began rising in her left leg. She began suffering sudden cramps in her calf muscles and her hands. Over the past 9 months this has progressed to intermittent bouts of significant foot pain that is nearly continuous, a feeling she describes as "walking on broken glass" and burning feet.
The cramps are sudden, last relatively long periods of time (15 - 20 seconds) in her calf, thighs, knees, and ankles, and are accompanied by excruciating pain. They happen at all times of day and night, and of course at night time they ;prevent her from sleeping. The pain lasts past the cramp, and is so troublesome she is unable to sleep.
The loss of sensation has affected her balance somewhat, so she has had to cureail many of her usual outdoor activities.
We've consulted with all the medical professionals who treated her. Further MRI and CAT scans show no evidence of further deterioration of her spine or nerve paths, other than the scoleosis we have always known about.
The doctors referred her to two neurologists who carried out EMG tests and determined that her nerve conduction is inded poor, showing significant latency in conduction to her hands and feet, but have not determined any other identifiable neurologic issue.
She is currently on a gabapentin regime that has lessened the pins and needles feeling. She was prescribed Lyrica but had no positive reaction. The only other prescribed medication associated with this problem are pain killers (Oxycodone and morphine) which she shies away from as much as possible.
Other medications she takes are coreg (blood pressure), and lotrel (cholesterol).
We are stumped on what to do next. Her quality of life is taking a severe downturn. None of the medical professionals we have consulted have offered much hope.
My extensive research on the internet so far has not shown any promising avenues for further inquiry.
We are fortunate to be able to travel just about anywhere there may be a source of genuine promise. We have been through the ubiquitous "laser spine instituted", and "back pain relief centers", all run by quacks and chiropractors offering remedies that sound too good to be true (we have not fallen for any, though now know that the promises always start with an initial expectation of $12,000 - $15,000 treatments, leading to the "golden age outflow of our gold!!).
So, I am open to suggestions.