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Upper Lobby
How I used social media, patient advocates, and my own research to regrow my femur bone
Upper Lobby
How I used social media, patient advocates, and my own research to regrow my femur bone
ePatient Scholar
For 3.5 years I had to use crutches everyday to get around. Why? Because I have avascular necrosis in my left femur in the knee joint. I went to doctor after doctor after doctor and every single one of... Read more

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For 3.5 years I had to use crutches everyday to get around. Why? Because I have avascular necrosis in my left femur in the knee joint. I went to doctor after doctor after doctor and every single one of them seemed to say the same thing. “I know what AVN is, I see it occasionally, but there’s nothing I can really do for you.” I was sick and tired of hearing the same theme between every “top doctor” I was seeing. They’d send me on my way with nowhere to turn, suggest I just spend the next 10 years on crutches and then, once my knee completely collapsed, get a knee replacement. No one wanted to offer me a knee replacement because of my age and because I had autoimmune issues, complex regional pain syndrome and overall was a “high risk” patient.

The advice I was receiving was unacceptable to me. UNACCEPTABLE. How could these doctors look a barely 30 year old woman in the face and offer no hope whatsoever?

I turned to the internet to try to solve my problem. I started a facebook page which now has over 1,600 AVN patients sharing stories. I found personal journey blogs, although there were only a few, which offered a few insights that I had not been given before.

Everyone always told me that it was idiopathic. I never believed them. Bone doesn’t just DIE! Every single doctor I had was ok with that answer, but I wasn’t. I was determined to figure out WHY I had AVN? Why was I so determined? Because as soon as I started talking to other patients, they not only suffered from AVN in one joint, but in several. Their knees were affected, their hips, their shoulders, their jaw. Why was that? Because they never addressed the underlying root cause.

Through my own research, and coming across a blog someone else had started, I found a doctor in Cincinnati who did extensive blood testing to figure out what the root cause was. I immediately felt hopeful! Although this doctor was a bit older, he was accessible through email and worked with people virtually. I only live about 5 hours away from Cincinnati, so my Dad and I actually drove out to see him. After 23 vials of blood were analyzed, he identified that I had a mutation on my prothrombin gene that made me more prone to clotting. Therefore, he could conclude that my blood had clot, cut off the blood supply to my knee and the result was dead bone.

At that time, I had 2 parts of my femur that had died. He said that had I found him earlier, he probably could have solved both portions, but because the larger part had started to collapse, he wasn’t sure if he could save it. The Doctor put me on blood thinner injections – twice a day for 6 months – and the hope was that the blood would thin, it would flush into the dead parts and the cells would start to revive. Some of the bone cells were probably dead, but others may have only been dying off and could possibly be saved.

After 6 months, and an MRI scan, the smaller section of my bone had revived! It didn’t even show up on my MRI scan! I WAS SO EXCITED! The next course of action was to continue to treat my blood clotting condition with blood thinners and the hope was eventually the larger part would become more stable that I wouldn’t have to worry about it collapsing.

The problem was, I was still in pain. I still needed my crutches. I still wasn’t getting back to the life I should have been living.

So, I went back to searching. If you look at AVN treatments, there are NUMEROUS ways that people address it. Unfortunately, there are numerous ways because there isn’t one sure fire way. I kept looking. My regular orthopedic avenues had failed me before, so I tried different ways of thinking.

I went to one orthopedic who seemed to think that completely cutting my femur bone in half, resetting the bone and keeping me in a brace to allow it to heal would help my problem.

I went to another doctor who wanted to inject me with placenta injections from Chinese women overseas.

I went to another doctor who offered me tubes of stem cells from other sources, not from my own body.

I went to another doctor who suggested PRP, platelet rich plasma, injections to help promote healing in the bone.

There was NO way I was cutting my bone in half to have it reset and there was no way I was having random asian placenta cells injected into my body which was already fighting itself.

But it started making me think. The mechanism behind the placenta injections and stem cell injections was the hope that the stem cells would help promote bone growth. And the thought behind PRP was to create an environment that was more conducive to healing. So, what if I found a solution that injected me with PRP and then I went and received stem cells – would that help grow my bone? If I was to get stem cells, I would want my own (my own research had concluded) so I knew I needed more information.

Because I’d become a master at thinking through my own issues, since no one else was helping me, and since I had become a pretty awesome detective on mining data online, I started searching. And guess what, I came across a procedure that I had no idea was in existence. A procedure which used stem cells and PRP to help patients avoid orthopedic surgeries. Upon spending the time to read every word on every single page of their site, I got to the doctor search. I figured there was NO WAY there was a doctor in my area, but I figured it was worth a shot. I typed in my zipcode, hit enter and BOOM – up popped a doctor right in my area. I started to cry. Why had nobody mentioned this to me before? I had literally seen every doctor in the tri-state area, no one offered me advice, no one offered me solutions, no one offered me hope.

I filled out the application right away and submitted it. This was my answer. I knew it.

After meeting with the doctors in Pittsburgh, I realized that I would need to travel to get my procedure done, but that the Regenexx procedure was definitely going to be my fix.

Because I knew there were so many others like me struggling to find the answers to their AVN problems, I made SURE to blog about every detail of my journey. I have a page dedicated to it on my site.

I can’t tell you how many patients I have reach out to me to find out more info about the procedure. This past december the clinic who does the stem cell procedures came out ot Pittsburgh and created avideo about my experience.

Had I not been an empowered patient and did my own research, had other patients not been sharing their journeys online, had I not tried to think through every single possible scenario and situation I could possibly think of . . . I may have never found my solution.

March 2015 I received my Regenexx stem cell and PRP procedure in Colorado. So far, my bone has regenerated 40% (as of my MRI in September and I’ll get another one in March 2016). It’s regenerated in a way that has solidified the structure and I no longer have to constantly worry that my bone is going to completely collapse at any second. I walk without crutches. I walk without pain. I get tears in my eyes everytime I walk up steps and don’t have to hold onto the railing, and relish in the basic fact that I CAN walk up steps.

I’m actually in talks today to start working for the clinic to help their marketing efforts and to help them embrace the patient voice. The reason I found out about this procedure was from other patients and from me doing my own research. I WANT to help other patients find this procedure a lot easier and with a lot less frustration than I did.

If I hadn’t been an advocate for my health, if I hadn’t embraced technology, and if I hadn’t believe in my heart there was a solution, I’d still be on crutches, I’d still be on a ton of pain killers, I’d still be missing out on life.

I'm currently on long term disability from IT consulting with Deloitte Consulting. To fill my time, and keep my spirits up, I maintain my blog, chat with other patients, and am currently enrolled as a student at the Institute for Integrative Nutrition. My goal is to create a health coaching practice, for autoimmune patients, helping my clients live their best life possible! I'm unsure if I will be able to go back to my previous job once I am able, but I know that I will pursue something along the lines of IT and heathcare.

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