The internet is a wonderful resource and holds so much information. It afforded me the opportunity to join many wonderful online communities that helped support my diagnosis’s. It seemed that every orthopedic doctor I went to had the same thing to say.. You’re AVN is idiopathic and we’ll really never know why it occurred.
I’m sorry, but a bone just doesn’t DIE in TWO places randomly. Something caused it. I was determined to get to the bottom of it.
After seeing many posts about a doctor in Cincinnati who does heavy research on avascular necrosis I emailed him asking if he’d be able to help me. He said he’d love to help, sent me over a 3 page script to go get blood work and said to make an appointment. 24 vials of blood later, my Dad and I were on our way to Cincinnati. A 4.5 hour trip ended up about 6 hours because of an accident ahead of us… But that’s a whole different story. Haha!
My journey with avascular necrosis started in December 2012. To date I have been told so many different opinions on how to attack the AVN. Some ‘specialists’ said I should just drop my crutches, push through the pain and live until my knee completely collapses and then get a knee placement. Others said I should get a partial knee placement. Others a bone graft.
Everyone had opinions on what to do, but, like I said before, everyone always said ohhh it must be idiopathic avascular necrosis and it just occurs out of the blue (since I didn’t meet the other criteria: deep sea diver, sickle cell anemia, alcoholism, etc.). I just didn’t believe that it could be idiopathic. It occurred for a reason… What that reason was I had no clue. But I needed to find that reason because I was finding that a lot of people on the AVN message boards had it in several places in their body.
After researching root causes, I found Dr. Glueck who researches causes of avascular necrosis. Through his research he has found several genetic factors that cause this to occur in individuals. Walking into his office I had a good feeling that I was going to get some answers and I would finally get on the right path to fix my knee. After all my research I really believed in him before I even met him. We had exchanged emails back and forth and he seemed genuinely interested in helping me. I really felt he was going to have an answer to some of my problems.
After an in depth evaluation of my health history Dr. Glueck got into his findings. I had shown positive heterozygous for the prothrombin/factor 2 gene. My Dad and I had a blank stare haha we had no idea what that meant. Dr. Glueck was prepared and already had a packet of information for me that had diagrams to explain exactly what was going on. (How many doctors do that?!).
I had been given this genetic factor from either my mom or dad and my blood was more likely to clot for no reason. Many had described the AVN to us as the blood supply getting cut off and the bone died as a result BUT Dr Glueck described it a bit different. My blood had clotted and cut off the blood supply to the two parts of my femur. The clot, acting almost like a beaver dam in a river, was not allowing the blood stuck in the bone to flow back out of the artery. The pressure built up and the oxygen was cut off. Then the bone slowly began to die. Bone tissue takes much longer to die than organ tissue so some parts may be completely dead, but other parts may not be dead yet and could potentially be revived. What caused this to happen? More than likely it was caused by trauma aka probably as a result of the psoriatic arthritis combined with my knee surgeries.
The remediation? Drug therapy with the injectable Lovenox. I would inject 100mg a day, split up as 40mg in the morning and 60mg in the evening, for 3 months. Every week I will email the Doc letting him know how it’s going and every 3 weeks I would get blood tests to ensure that all was well. After the 3 months I will then get an x-ray and an MRI to see if the meds have allowed the blood to resume flowing to the bone and to see if there has been potential improvement. If there has been improvement or there is indication that something positive is happening I would then switch to an oral anti-coagulant for another 3 months and then repeat the tests. The whole process may take about 6-9 months to assess if it is working. After this time, if it’s not working, then it’ll be time to explore surgical options. Doc suggested I use my crutches to take more weight off of my leg to try to ensure my bone doesn’t collapse. This is the part that bummed me out the most because I’ve been strengthening it so much I’ve been using it a lot more and have been walking in small areas. Now I had to go back to not doing that…. And will probably be on my crutches for at least another 6 months. Oh yay! Oh well. If it’s best for me then that’s what I have to do! Like it or not! I’m not too excited about having to inject myself twice a day, but again! If it’s the best for me then I’ll suck it up!
In the office they took two more vials of blood to do an eNOS gene test to see if I have problems with nitric oxide in my blood. Of course I tested positive on this test too (why didn’t I ever get these kinds of positive grades on tests in school haha!). Because my blood doesn’t make enough nitric oxize I need to add 9 grams of the amino acid L-Arginine a day to help the process along. (this is a whole another post on it’s own ayyyeeeeee. L-Arginine. Yuck.) Here is a more in depth explanation of Endothelial Nitric Oxide Synthase from Dr. Glueck.
Mutations of the prothrombin gene are the second most common factor which relates to avascular necrosis, first being a mutation in the factor 5 gene. Before leaving he gave me a NO NEVER list. Never should I take any estrogen, testosterone, evista or tamoxifen. I should hardly ever take prednisone or other steroids, like cortisone, as it can set off the clotting. Because this is a genetic disorder, I had to have been given the gene by either my Mom or Dad. It’s likely that they may have passed it on to my sister and brother too. Because they may also have the same problem and will be more susceptible to clots, which could result in a stroke, aneurysm or AVN, all 4 of them must be tested for the mutation now. The great thing about identifying this now is that it could potentially save an unnecessary stroke or something worse!
The frustrating part of the story is that no one I’ve gone to up to this point has ever mentioned any hint of a blood or genetic disorder that could have caused the AVN. We’ve asked numerous doctors countless times why this could have occurred and so many of them just say the cause is unknown. But that just never made sense to me! Everything has a cause right!?!? Dr. Glueck has been publishing literature on his research findings for numerous years now and it seems that doctors are so focused on their standard patients that they’re not going out of their way to help other patients. Thankfully Dr. Glueck is trying so hard to get his research out there and is going to be speaking at the orthopedic convention this year. You can check out his research on this website.
I’m excited and hopeful to see where this leads. If you have avascular necrosis and doctors are unsure of why, you should get in contact with Dr. Glueck. He will work with you even out of town. Share your own AVN story on this thread.
Please feel free to ask me any questions about it! And I’d love to get any feedback from others who may have the same problems!
Check out my updates to this post.
From there I decided to look for other options and ultimately ended up getting a Regenexx Stem Cell procedure done in March 2015.
Wishing You A Pain Free Day!