Alan Randall Kreimier
I am a 63 year old man now, and I was eighteen when I first started noticing the beginning symptoms of ankylosing spondylitis, or AS for short. In my third year of high school I began experiencing a sharp nerve pain down the back of my right leg when I ran; this was not too long after having surgery for a torn knee cartilage. It was first thought, by doctors, that I was experiencing a nerve response to a ruptured disc. As the pain grew worse I underwent very painful chiropractic treatments, along with traction in the hospital, all of course were of no help.
I was around 20 years old when a specialist in Denver CO finally diagnosed it as AS. He explained to me how the disease would manifest itself, which was very disturbing to hear. Back then, around 1967, all they could really do was to treat the symptoms, which is the pain. At first I underwent radiation treatments, then over the years have taken a variety of pain medications, such as Phenylbutazone in my early years, which according to Wikipedia Dictionary on the internet is no longer approved for human use, Darvocet, Codeine, steroid injections in Mexico, and over 20 aspirin a day at times. My parents even sent me to a sanatorium in Romania to try a drug they used there, the name of which escapes me. I’m not going to try and explain how the pain feels; I’m sure anyone who reads this article and has AS is quite aware of its intensity.
After high school I started Southern Illinois University majoring in Aviation Technology, in hopes of becoming an airline pilot. I acquired all the necessary pilot licenses and ratings, and then I worked as a flight instructor for the Southern Illinois University until obtaining my BS Degree in education. Following the university, I began flight instructing and flying charter flights at numerous locations around the US, all the time with the AS worsening. In my late twenties I had to stop flying airplanes for a living, I then went on social security disability and moved to AZ. After a couple of years on disability, and having fun in the sun; the social security administration setup an interview in April 1978 between myself and the company I still work for today, Bechtel. I filled out an application and they were impressed with my hand writing on the application so they decided to hire me as a draftsman to draft construction schedules, rather than handing out weld rods, which was the intended position. After about three years they promoted me to the engineering organization. Since then, I have been fortunate to work for a company allowing me to not only work all over the US, but also many places around the world.
My recollection is that it was probably in my early thirties when you could begin noticing significant changes in my posture and stiffening of my neck. It was sometime in 1982 when the motion, and pain, in my hip joints grew so intense I had to have a bilateral hip replacement.
I took off from work for seven weeks, and had both hip joints replaced at the same time and haven’t had any problems with them since.
As time passed the physical deformity worsened, and my spine gradually fused on its own, I’m thinking it may have been around the late 1980’s to early 1990’s, at which time my spine was pain free. I still have pain and limited motion in my shoulders, which I now take Humira for, a medication unavailable when my AS was first manifesting itself. Perhaps if it, or other medications like it, would have been available when I first got AS none of the deformity and stiffening I experienced would have occurred, I’ll never know.
In October 2008 I fractured my C5 vertebrae, from a fall, while working in Trinidad. In December 2008, I was referred to Dr. Howard S An, Director – Division of Spine Surgery at Midwest Orthopedics at Rush, by a Dr. Kim W Hammerberg a doctor my nephew found in your doctor directory list, but had recently retired. He highly recommended Dr. An because he was highly knowledgeable in AS. A team of doctors at Midwest Orthopedics at Rush compared a CT SCAN of the fracture taken a couple weeks earlier with an x-ray they had taken that day, and didn’t see any movement in the break, so it was decided to monitor it and see if it would heal on its own, which it did after about six months. Over the two years following that incident it was apparent that the break I suffered had taken its toll, causing my head to move further downward until my chin was nearly against my chest. Out of concern how this condition could cause a problem in case I needed help from first responders unfamiliar with this condition, and a desire to improve my life style, I went back to Rush University Medical Center and talked to Dr. An about undergoing a major surgical procedure called a Cervical Osteotomy, which he told me about a couple years earlier. In layman’s terms, the surgical procedure breaks the cervical spine, repositions the head to an upright posture then fuses the spine, in my case from the C3 to T1 vertebrae. Dr. An agreed to perform the surgical procedure, so I had it performed on April 21, 2011. I was very optimistic about the outcome because of an article I read earlier, in Spondylitis Magazine, from a man named Jim Hall that had this same operation and described the positive results he experienced, also, I knew I had a great surgeon doing the work. The surgery was a great success; I could lay flat on my back for the first time in decades; I could actually stand upright and look people in the eye, read overhead menus in eating establishments, I found it easier to swallow food and could open my mouth wider… This surgery has greatly improved my life style, and I would recommend it to anyone needing this correction, however, my doctor tells me it is a very technically difficult surgery, so I’m sure the number of surgeons that can successfully perform it are very limited.
Family support was also very important during this time; I had the tremendous support of my two sisters. After four months of physical and occupational therapy, I returned to work in Tennessee.
As of today, November 2, 2011, I’m still experiencing some weakness in my upper body and numbness in hands and forearms; the doctor believes this will improve with time explaining to me that nerves take some time to recover. Nothing was affected below my arms from the surgery.
If you are undergoing severe pain due to AS, all I can say is that it is something you’ll have to live with every waking hour until the joints either fuse or are surgically replaced when it’s possible. Also, rather than just sit around thinking about it; I believe you would be better off keeping your mind occupied with work and staying as active as possible. It’s not going to be easy on many days, but I think you would be better off; at least that was my experience.
All in all, I suffered the most pain from AS from about ages nineteen through my early-thirties, after that it became more easily manageable.
One last thing, a medical condition known as Iritis can also spring up from AS. The physical symptoms I experience are severe inflammation in the front of the eye; the eye is sore to the touch and sensitive to light. I’ve had it several times during my lifetime. If these symptoms springs up you will need to seek the immediate help from an Optometrist, don’t let it go, it can be treated.
This has been my life with AS in a nutshell.
Alan Randall Kreimier