A.S. Face 0935: John L. Nichols
I am a 60 year old male. I have spent most of my adult life in healthcare, X-ray and Ultrasound. I was first told by a Radiologist friend in 1988 that I had signs of AS in my SI joints. I’ve had problems with my lower back since I was 18 years old. I have also told every doctor that I’ve seen since 1988 about the radiologist saying I had signs of AS but they would run an RA panel which always came back as negative so the AS info was swept under the carpet. I continued to have LBP symptoms on and off over the years. I have also had chronic diarrhea for years and had a colonoscopy which was essentially negative.
During the fall of 2009 I started having severe left shoulder pain. I could only describe it as “bone deep”. There was no limitation of motion, nothing caused it to hurt more. I was taking 800 mg of Ibuprofen three times a day to just function. I finally complained enough that my PCP ordered an MRI of my cervical spine. That showed buldging discs at C5-6 and C6-7 with nerve root involvement. I was referred to a Neurosurgeon in early 2010 for a consult. After intial treatment with PT and being put on muscle relaxers and pain meds the decision was made to perform an Anterior Cervical Diskectomy and Fusion of C5-6 in June of 2010. The Neurosurgeon said that I didn’t have a buldging disk but had bone spurs and arthritic changes in my neck. The ACDF did relieve the pain in my neck and shoulder for over a year then the problems returned with a vengence. I had also told the Neurosurgeon about the AS information from 1988 and he just shrugged his shoulders. In Early 2012 I was again having the neck and shoulder problems plus my hands were going numb. I again saw the Neurosurgeon and after multiple steroid dose packs, PT and conservative treatment it was decided to go ahead and perform ACDF of C6-7.
That was done in late April of 2012. This time there was no relief after the surgery, the pain got worse. I had started having severe pain between my shoulder blades radiating out to my right arm and shoulder. I continued to follow up with the Neurosurgeon who did x-rays and MRI of my cervical spine and said everything looked good. He eventually told me to continue to take Hydrocodone 10/325 three times a day and Tizanidine 4 mg three times a day but I could go back to work. (I was driving as much 300 miles a day traveling for work) I asked him how I was supposed to drive and take those meds and he said I didn’t need to be driving but I was released to go back to work. ??? PCP kept me off work. Applied for Long Term Disability through company and was awarded. They insisted that I seek assistance of a SS Advocate group that they had a relationship with to apply for SSDI.
I returned to my PCP who referred me to an Orthopedic Surgeon. X-ray right shoulder (monster bone spur) more PT.
Nerve conduction study (probable Carpal Tunnel Syndrome). Referred to Orthopedic Spine Surgeon for evaluation of neck.
Continued pain in Thoracic spine area. Cervical Myelogram with post-myelogram CT. Nothing major showing up in cervical spine except metal internal fixation plate. Continued pain, referred to pain management specialist, subdural cortisone injections in neck. Continued pain in thoracic spine and shoulders/arms, hands going numb. Told all of these specialists about the AS info from 1988, no one listening. Returned to my PCP and finally referred to Rheumatologist in March of 2013.
Intial visit with Rheumatologist I told her about everything that had transpired and told her about the AS information from the Radiologist in 1988. She ordered what seemed like full body x-rays. I was put back in the exam room. Rheumatologist came to exam room and had me come with her to x-ray to view my films. Long standing damage to SI joints, seven thoracic vertebra already fused, all spinal curves straightened due to muscle spasms. Started on Cymbalta (causes urinary retention problems), NSAIDs, still taking Hydrocodone and Tizanidine. At least I have a diagnosis (AS) and now I know that I’m not crazy. My PCP knows that I do actually have something wrong with me. I remember telling a friend several years ago that I felt like my body was attacking me. Turns out that it really is. I still have considerable pain, I am so fatigued most days that its a major effort to just get dressed. I now am having a lot of pain in my knees and recently my hips have started hurting. I don’t think the NSAIDs are helping. I have a Rheumatologist appt. next week and plan to ask if we can change some meds. Actually, plain old OTC Ibuprofen at 600 to 800 mg doses helps the pain more than the expensive prescription Nabumetome but is rough on my stomach. Maybe something different will help.
After the first visit with the Rheumatologist I called my SSDI advocate and told her about the diagnosis and gave her the doctors name and address. One month later I received a letter from SSA telling me that I had been approved for SSDI. No explaination given, effective September 1, 2012. All back pay from SSDI had to be paid to the LTD insurance company and they paid the Advocate group.
I like, like some many others get the constant “You look healthy” comments. I don’t want sympathy, just the realization that what is going on inside doesn’t always show on the outside. I may not be missing an arm or leg but I still have physical problems that hurt almost every minute of every day. I am getting to the point that I don’t remember what it felt like to not hurt.
John L. Nichols
Arkansas, United States of America