Update: Avascular Necrosis Treatment with Blood Thinners

So how is my knee doing since starting use of the Lovenox blood thinner injections for my avascular necrosis treatment? That was the million dollar question going into my last check up in the beginning of April.

Since I was diagnosed with avascular necrosis in December 2012, I’ve tried so many different things to try to get my pain and swelling down and to get my knee back to normal. When I first heard that blood thinners could possibly help get blood flowing to my knee (to revive some of the parts that haven’t completely diet yet) I was skeptical. But – hey! I’ll try anything!

The avascular necrosis treatment plan phase 1 was for three months. My three months of injections were completed the first week of March 2014. I had an MRI on March 17th and I had a follow up appointment scheduled with my new orthopedic doctor April 3rd. The ortho doctor I had the appointment scheduled with was the first ortho I found that:

1. OFFERED to call my blood doctor to talk about a collaborative approach (I was shocked when the words came out of her mouth!)

2. Said she would help me

3. Made me feel valid in the pain and emotions that I was feeling

I was excited to see what the MRI film would say and what my next step would be. I’ll be honest, I went into the appointment not expecting much because my pain level was basically the same. There really hadn’t been a big change.

About two weeks prior to my appointment I received a letter stating that my doctor was leaving the system as of June. I was crushed at first! NOOOO!! I finally found a doctor who I felt was listening to me and now she was leaving????? I hoped that maybe she was just moving to a different healthcare system in the area and told myself not to freak out until I saw her and asked her myself.

So April 3rd, I woke up like it was any other day. I really didn’t want to get my hopes up because when I had first started on the blood thinners we talked about how after 3 months there probably wouldn’t be much change and we probably wouldn’t know if it was working until 6 months into the treatment. The nurse took my mom and I back to the examination room and we asked her where the doctor was moving to. She was moving to Northern Virginia to head up a big sports medicine practice for the DC area. It seemed like an extremely, wonderful opportunity, but it made me sad. It’s only a 5 hour drive, I have friends in the area, I could go and see her there! I told the nurse that and she started laughing. Riiiight… I don’t think she believed me, but I was 10000% serious.

A doctor working with my ortho came in and proceeded to tell me news that floored both my mom and I. In my femur I have 2 spots of avascular necrosis. A smaller AVN spot, in the medial part of my knee, which is deep in the bone. The larger AVN sport, on the edge of the lateral part of my femur, which had partially started to collapse. The doctor informed us that the smaller part of AVN DIDN’T EVEN SHOW UP ON THE MRI!!!

SAY WHHAAAATTTT????

I couldn’t even believe it. Going into these injections I was thinking it would be another 6-9 months before I’d know if I would need to go down a surgical solution route-but here I sat. 3 months in. AND THE SMALLER PART OF THE AVN DIDN’T EVEN SHOW UP! I zoned out for a few seconds. I just went back to all of the injections I gave myself the weeks prior and couldn’t even believe that those small acts in my day were actually working. I WAS FINALLY SEEING SOMETHING POSITIVE!! I can’t even tell you the last time I was in a doctor’s office and received positive news. Honestly, can’t even remember….

He went on to say that for the larger section of WHHAAAATTTT necrosis I had 3 options

Option 1: Keep going with my blood doctor’s avascular necrosis treatment plan and see what happens in another 3 months

Option 2: Drill out the dead bone and fill it in with cadaver bone. It would almost be like I was on an organ donor list and, as soon as a bone that exactly matched my femur came in, I would be called to have the procedure done.

Option 3: Since the AVN spot on the lateral side of my bone has started to bow out my leg, the third option was a procedure to fix this. Basically the top of my femur would have a section of it cut out and the bone would be set on an angle. This surgery would be a pretty major operation, I would spend about 6 weeks in an immobilizer and would have a pretty significant recovery time.

Well. Option 1 was looking pretty damn good to me. I wasn’t going down the surgical route until I knew I absolutely had to. With my Complex Regional Pain Syndrome (CRPS)’s uncertainty I knew I wouldn’t go through with something unless the probability outweighed the risk. I just didn’t have the chance to take a risk. It took 9 months to settle down once I received the diagnosis and I was EXTREMELY LUCKY that it actually DID settle down. There are so many of my CRPS Warrior brothers and sisters out there that have never had their flares settle down.

I asked if there was possibly a brace that would mimic option 3 that would be useful? The answer was yes and we decided that I would be fitted for one. Then, my doctor let out a statement that made my Mom and I tear up. She said that with the brace, since it would help distribute the weight evenly on my leg, that I could start to walk small distances without my crutches.

……………. *blink* …. *blink*…. WHAT? ………………

She said things like walking at home, helping me to do yoga, small activities.

I couldn’t even believe what I was hearing.

The small avascular necrosis spot didn’t show up on my MRI.

AND NOW

I’m hearing that, if I use this brace, I could start to walk a bit without my crutches.

The doctors both walked out of the room to get the woman to measure me for my brace and my mom and I both started crying. This is NOT what I expected. Usually if I received unexpected news at a doctor’s appointment it was bad news…. not AMAZING, WONDERFUL, GREAT, SUPER, RIDICULOUSLY EXCITING NEWS!

The Elizur rep came in and measured my leg for the brace. While she measured she mentioned how skinny my legs were-wow… this day couldn’t get any better!! The DonJoy Nano brace, that I would be receiving, is a really light brace that would help stabilize my knee. I’ve had my share of braces in my life and I know what a pain in the ass they are to wear. BUT! If wearing this brace meant I could jump back into my favorite yoga studio classes, and/or drop my crutches at home, I was definitely willing to try it!

So needless to say, the blood thinners are totally helping my AVN! I’m a little off put by the bow legged comment that the doctors agreed was occurring in my leg. They said that this problem couldn’t be corrected with anything other than option 3. I’m curious to pick my chiropractor’s brain about this and see if he thinks there is another solution to the problem.

After talking to my blood doctor we decided that since my body responded so well to the lovenox injections I would try another 3 months. He usually switches people over to an oral anti-coagulant, but I was MORE than willing to keep attacking my problem aggressively.

So as of now I’m waiting for my brace and my boxes of injections to arrive. Fun fun funnnnn packages 🙂 haha! Hey! If they help, whoooooo cares!

Wishing You A Pain Free Day!