In October of 2008, my husband tripped over our 4 year old and twisted to try to keep from landing on her. He hurt his back. That was the beginning of a long and stressful journey. He would be able to work 3 days, then would end up in bed for 3 days. He was in excruciating pain. He was starting to have trouble walking. They took xrays and did MRIs but everything "looked normal" except for a herniated disc. The primary care Dr simply kept prescribing him different meds. Sent him to a Physical Therapist. Finally the Dr threw his hands in the air and told him he'd have to see another Dr, he'd done all he could for him. He gave us a referral and we went to see an Orthopedic Dr. They also took xrays and MRIs. They said the same thing, nothing wrong but a disc. We were frustrated and wouldn't accept that diagnosis. My husband was describing the pain, and when he said the word pelvis, the assistant went back and looked at the xray. He sent us to have an in depth MRI of the hips. We went back to meet with them after the results. That's when we first learned of AVN. They said the hip joint was almost completely dead and he'd have to have a total hip replacement. By this point, my husband could literally, barely walk. His first surgery was on May 5th, 2009. He had his left hip replaced. After the surgery, the surgeon came out and told me the hip literally crumbled when they got in there. It was completely dead. Now my husband was on short term disability. Shortly after the surgery, he kept complaining that one leg was longer than the other. I told him to wait, there was a lot of swelling that needed to go down. A week later, we're sitting side by side and I notice he's right. The left leg was longer. We went back to the Dr's office when they could get us in, which was almost a month,. The left leg was 1 1/2" longer. They said there was nothing they could do about it, and wrote him a script to get special shoes with lifts. These were outrageously expensive. So, he bought a pair of cheap black shoes and found a local "cobbler" that added an extra thick sole to the right shoe. While all of this is going on, he is still having immense pain. Everyone said he'd feel so much better after the THR. We didn't understand why he was having so much trouble. Back to the Orthopedic Dr again. He says my husband needs to see a pain management specialist. This woman told my husband the pain was all in his head, that there was nothing wrong with his hips. She wrote him a script for anti depression meds. We were infuriated and went BACK to the Ortho Dr again, and told them, it's just like before. This time they listened and focused on the right hip. The necrosis wasn't quite as bad, but he would need to have it replaced. So, back to surgery. Several months later, my husband is STILL in pain. We went through 3 more Primary Care Dr's that all said he had to do steroid injections at $1200 a hip. No one offered answers, just wanted to bill insurance for the big bucks. We were at the end of our rope. During all this, my husband had to apply for SSI according to his companies insurance that was covering the short term disability. So, we ended up having to get a lawyer. From that lawyer, we got a referral to a good and decent pain management, orthopedic Dr. He actually listened, and came up with a plan. After all of the walking with damaged hips, then walking with an uneven gait, my husband's pelvis was completely out of alignment. We have since discovered that it has lost it's ability to stay in place. It shifts constantly. He does physical therapy, which helps with the pain a bit and keeps him somewhat mobile. He was finally approved for full disability. This whole situation caused us so much stress. It harmed our family, our daughter, our finances. If any one of the numerous Dr's we'd seen before the assistant discovered the AVN had been aware of this and the possibility of this, we would not have ended up in such bad shape. With only one income for 3 years (that's how long it took to get approval for SSI) we've ended up in so much debt we're now facing the real possibility of going bankrupt.
Many of us belonged to Facebook support groups for Osteonecrosis, which are really a great place to connect with others who can relate to what you are going through, and can tell you about the things they have experienced. We learned that most of our struggles were common: getting to the correct diagnosis, the isolation of no one knowing this disease, dealing with chronic pain. It affects your family and the way it changes your whole life:. Children cry because they want to be like their friends, people who lose careers they are passionate about, being isolated from family activities because you cannot walk. One of the saddest aspects is the lack of support from those who have never heard of the disease.
After hearing so many amazing stories of stories, we started questioning "why isn't anything being done ?" After struggling to find the place we fit into, we decided to make our own. We created our awareness group. We started small, as others joined in, our goals and energy grew. We write letters, make videos, we tweet, we do outreach and share ourselves and our stories to inspire others. We do everything we can do to support those with the disease, fight for those who cannot fight for themselves, and strive for more research into preventing others from knowing this pain. We went from "something has to be done" to "why don't we do something", it's very good feeling to be fighting back. Now that you've found us, we hope you join us. We love new friends and we need everyone to get this job done.
Our group on Facebook is called O.U.C.H. Awareness. We began as a collection of people who all have the disease, Osteonecrosis.
Every month, we share the personalized story of one of our members. This is their experiences, in their own words.
Please meet The Burke Family
Working together for better treatments and outcomes for all .
Thank you to the Burke family for sharing your story.
We share similar challenges, and none of us are alone in the struggle. Osteonecrosis awareness will educate the public and help us gain empathy, reform laws that govern disability for osteonecrosis, and force insurance companies to be proactive in preventative screening to prevent further bone collapse in those with a diagnosis in one or more joints. It will take everyone, and it may not be easy, but it's time for awareness.