Living with RSD

About 6 years ago my husband and I were involved in a car accident where the other car T-Boned us on the passenger front side. My husband was driving so he saw it coming and braced for impact. I was uninjured but he ended up with 2 bulging disc and 1 torn disc all in his C-spine. We had really good medical insurance but couldn’t find a doctor who could diagnose his spine problems. Finally, we requested a MRI only after being accused of displaying typical drug seeking behavior. (How embarrassing!) Finally, after the results were in he was referred to a local spine specialist. We were so happy that we had proof that my husband wasn’t making this up.

The spine specialist subsequently put him on a regimen of Oxycontin and once monthly cortisone shots right into the spine and oral steroids. About 18 months later my husband started to complain about pain in his groin. The doctor says, “Lets put a shot of cortisone in your lower back to help that out”. The groin pain persisted and got worse so he was scheduled for another MRI and that’s when our life changed for the worse. AVN or avascular Necrosis or osteonecrosis or as we had it described to us “deadening of the bone from the inside out”. The spine specialist never told us the possibility of this complication from steroid use. We tried core decompression, that failed. He saw several orthopedic doctors and they all told us the same thing I can’t do anything about the pain and since you don’t qualify for hip replacement at this time there is nothing I can do right now.

This is one of the most painful diseases to deal with and comes in second or third only to bone cancer. My husband sought out the help of a Pain Management Specialist. He was put on a pain pump with Diluadid being pumped right into his spine. The pain from his spinal injuries is dwarfed by the pain in his hips. The Orthopedic doctors now tell him that they don’t understand why he is feeling so much pain. With the pain pump and oral pain meds he should be feeling no pain. Today 9-17-09 my husband heard for the first time “RSD”. Everything we have looked up says this explains the pain. The only thing that I can’t understand is why is it that before the topic of RSD came up was the doctors telling my husband that even if they could do a hip replacement that it wouldn’t solve his pain issues. I was under the impression fix the hip; the pain goes away.

Here is the kicker: my husband was diagnosed with AVN at 25 and he is now 30. The complete quality of life issue isn’t even brought up anymore because the doctors think that not having to do multiple hip surgeries out weighs my husband’s necessity of good quality of life. We are angry, frustrated, wish we could go back in time. He gets uncomfortable in the church pews so he quit going, he can’t stand for a long period of time so going even to the department store is a big deal. He misses so much and he hates not being able to see some of the things his children do. Does anyone know if there is even a cure for AVN or RSD?