My name is Hunter and I’m 20 years old. It all started when I was about 11 when I was in 6th grade. I was having horrible intestinal problems (stomach pains, diarrhea, etc.) Within a year of those stomach symptoms, I was diagnosed with chron’s disease (a stomach disease) and put on prednisone and some nsaids. Within the next few months (7th-8th grade) I started having horrible leg/hip pain and the doctors said it was probably just “growing pains.” A few months after that, I started having horrible neck pain 24/7 and went to see various doctors. They did x rays, mri, cat scans, blood test, pretty much every test possible… First they diagnosed me with rheumatoid arthritis and a few months later I was diagnosed with ankylosing spondliyits. By then, my hip was fractured for no reasons (went on crutches) and my neck began to fuse very quickly. My rhemtologist said I should get on a biologic drug and she said humira would be a good one to consider… but my mom said no because the bad possible side affects… I really wish she wouldn’t have said no, but I was so young I didn’t know what was going on. Oh well…can’t change the past until someone invents a time machine! I was seeing physical therapists, chiropractors, many doctors, etc. to reduce and help with the pain.
By the end of 8th grade (summer 2007) my neck was pretty much destroyed… very little motion, fusing, and the transverse ligament in my upper neck (holds neck to head) c1-c2 was destroyed. I saw an orthopedic surgeon who said I needed to get c1-c2 in my neck fused which are the top 2 vertebra that account for 50% of all neck motion… I was thinking, ahhh my life is over. We got a 2nd and 3rd opinion and they all said the same thing, if I didn’t get a c1-c2 fusion they I had a chance of paralysis or death just from a fall. So in June, 2007 I had the c1-c2 neck fusion. Worst experience and pain of my life. It took me over a year to recover. I was expecting to get “up to 50% neck motion” after the fusion like the doctor said, but since my neck was pretty much all fused on it’s own that wasn’t going to happen. A few months after the surgery, I finally was put on humira. By then it was too late, my neck and hip were pretty much toast. I’ve been on humira every 2 weeks since then. Humira has helped to prevent more damage to my body but I wish it could’ve helped my neck more. I started high school with a neck brace that year, 2nd worst year of my life (the worst was 8th grade). 😦
Today I’m 20 years old and still in a lot of pain in my neck, back, and hip. My spine has fused itself from the top of my neck to about the mid thorasic region but on a good day I can get 20 degrees left or right rotation with my neck but up and down motion just isn’t there. I was in a car accident in August of last year and that made my neck a lot worse and had to have hip surgery from all the joint damage over the years. Sorry if I sound like a downer, I just finally decided I wanted to post my story after reading many people who have been through similar to what I have. I had to take this year off college because I’ve been in so much pain. Been on pain meds for a longgg time and the depression sucks; good thing I have a supportive group of family & friends. Every day I wish I’d wake up healthy and pain free… so I could play baseball, swim, go on a roller coaster, and just have a “normal” life. AS affects every aspect of my life… personal, social, professionaI, recreational… it really does suck as most of you AS sufferers who are reading this already know. The only decent thing related to this disease is you learn a lot about yourself… I’m a pretty social guy but lately I’ve just been alone, but I hang with my friends and family sometimes. I do have some hope though for AS in the future, maybe a scientist or doctor can invent a cure? I’ve been doing research on how to restore motion in the spine once the body has fused it… I saw a new technology called “facet joint replacement” where the cut the facets (joint on the back of the spine that controls motion) out of the spine and replace it with a prosthetic one. Once this new technology is legal and combined with disc replacement, this would be awesome for people like me who have a fused part of their spine to get back some of their motion. Have any one you guys heard about this? Google it if your spine is fused or it’s in a lot of pain.
Anyways, that’s pretty much it. I wish I could end this on a good note, but AS took away my teenage years and I’m sure it’s downhill from here until I kick the bucket. You probably think I’m a pesimist (which is partially true) but I see myself as more of a realist. I’m only 20 but I feel like a 70 year old grandpa. I’ve always wondered if my health problems started because I had a horrible diet as a kid or I had bad genetics? The past 8 years have had a few good parts (highschool graduation, college) but have kinda sucked overall… I guess you have to fight through the pain instead of letting it bring you down. Hopefully I will get better, along with all AS sufferers. Thanks cookie and all “faces” on this blog, good to know I’m not the only one going through this hell and have some fellow AS sufferers to talk to. Pray for a cure for AS… and for me, if you want.
– Hunter R. ,
North Carolina, United States of America