I haven’t posted on here in several months. What was supposed to be a short break from my site ended up being longer than I anticipated. However, all the while I have been reading everyone’s comments, feedback and news.
I moved in the spring to an apartment with fewer stairs. Moving was not an enjoyable experience, I wasn’t really physically up to it and it took me months to unpack. My husband and I went on our first vacation in over two years since I was diagnosed with Osteonecrosis/Avascular Necrosis. It was a beach vacation so it didn’t entail much walking for me.
I had been on the pain medication tramadol for 16 months and decided in May of this year to see if I could cut down on my intake. I was taking 50mg of tramadol 3 times daily. By early June I had cut it down to 25mg 3 times a day while still managing to keep my pain under control. I was extremely happy to have cut my dosage down by such a degree, but when I tried to decrease it even more the pain increased and was no longer manageable.
I decided to see another orthopedic specialist in San Francisco, Dr. Scott Dye at California Pacific Medical Center (I almost can’t keep track of how orthopedic specialists I’ve seen at this point). Dr. Dye ordered a bone scan (I had not had one since November 2011) because he wanted to look at the vascularization of the area around my knees and femurs (as a reminder to those who may not have read all my posts, my ON/AVN was in patches in both my femurs). The bone scan came back looking perfect; he couldn’t see ON/AVN anymore. I told him I didn’t understand why I continued to have consistent pain and increased pain with increased activity. Dr. Dye decided that I probably had severe patellafemoral syndrome and synvonitis which were caused by and secondary to my ON/AVN. Dr. Dye recommended I rest my knees and give my body time to heal. For six weeks I tried to cut down my activity. This was hard to do considering I was barely walking any distance whatsoever and the only real activity I was doing was physical therapy and swimming. I continued with PT and continued to swim between 4 and 5 miles a week. After the six weeks I can’t say that I felt any different. I began to grow impatient with my progression and confused as to why I would have pain where there was no longer evidence of ON/ AVN. Intellectually I understood that I was getting better. I had good results from MRIs taken in February; Dr. Glueck’s ortyhopedic specialist had looked at my scans and said the ON/ AVN was no longer evident. Then there was the bone scan which showed the same thing. In my heart I didn’t think I was really getting better because of the pain.
However, looking back on the last eight months my improvements were so slight I barely noticed them. It wasn’t until a friend said something to me about me walking differently or I walked up a hill without pain that I realized things had begun to change. Over the last month something has greatly shifted inside of my body. I woke up about three weeks ago with no pain for the first time in nearly two years. Therefore, I decided to try to cut down on my tramadol again and now I’m down to only 50mg once a day. I started walking further to see if it effected my pain the next day, it didn’t. Each day over the last month I have walked gradually more and more.This past Saturday I walked 5 miles during the course of the day. Even a few months ago 5 miles would have been impossible for me to walk.
I was very hopeful when I was first diagnosed with ON/AVN and started this blog. Hope was the only thing that got me through the time I was in a wheelchair and my life had shrunk to such a point I didn’t recognize myself anymore. I look back on the last two years with disbelief and sadness. I’m not the same person I used to be. I am so grateful for my improvement now and wish I had believed in my body more this last year.
I can not be absolutely sure whether my ON/AVN was going to get better, regardless of my propensity to clot easily, but I believe that discovering and treating my blood clotting disorders has helped cure my ON/AVN. I have been on blood thinners for 15 months, starting with a 3 month course of enoxaparin sodium (Lovenox), and will continue to be on warfarin (Coumadin) for life. I continue to take L-Arginine, Folic acid and vitamins B12 and B6 everyday.
I wanted to share my good news with all of you and will continue to post on a more regular basis. I am humbled and touched by all your stories and hope that you all see improvement the way I have.
Cassandra, I’ve been following your blog (and progress) for a few months now. Feels so good to read how far you’ve come. To wake up in the morning with no pain sounds like a dream come true. I hope you continue to get better this way and are able to come off of even your bare minimum pain meds very soon.
You don’t know this but you’ve helped me a great deal in finding out the cause of my AVN (both hips and both knees). Nearly everything had been ruled out and everyone was clueless before I came across this blog and contacted Dr. Glueck. A complete thrombophilia profile showed that I have Protein S deficiency and a 4G/4G homozygous mutation on the PAI – 1 gene. However, I’ve been on anticoagulant therapy for 3 months now and recent MRIs show that the AVN has progressed. So in my case it didn’t respond to blood thinners possibly because I was already late stage 2 by the time of diagnosis and have numerous lesions specially in the knees.
Nevertheless I am very hopeful after spending the better part of this month researching an autologous stem cell transplant treatment currently being offered in Bangalore, India where I reside. They have treated about 24 patients so far and had wonderful results in all of them. This is one of a handful of places in the world where the procedure doesn’t involve core decompression. I met the orthopedic surgeon yesterday and will be starting the procedure very soon. In fact I’m thinking of starting a blog regarding the treatment and my progress over the weeks. Needless to say, your struggle and writing has been a source of inspiration for me. I hope you keep inspiring others as you have me.
Cassandra, I’m so happy for you. This has been very frustrating for me, too. I needed to stop my lovenox temporarily for a week, after 20 days of treatment and it was a miserable week. I couldn’t believe how achy I was in my elbows, ankles,shoulders and even my muscles were.
I have anticardiolipin antibody but I’ve never had a DVT or pulmonary embolism. I had no idea I had a clotting problem until Dr.Gleuck ordered all the labs for me.
He says that if the pain returns after my 90 day treatment, that he will use a medication called xarelto.
I just had my second knee surgery 4 days ago in Colorado. Decompressin with stem cells with Dr. Cynthia Kelly. She’s great. I’m so glad I found her on this blog! Thanks, everyone!
Hi, I would be ever so grateful if I could speak to you regarding your experience with Stem Cell treatment in Bangalore.
Thanks for your email. I just happened to get this via google and wondering if i can get more details please.
I understand its more than 3 years now but appreciate if you’re still on this blog and respond me.
Did you manage to get the autologous stem cell for AVN? How did it go? Can you please share the hospital/surgeon details please? Happy to ring you in case you can share your contact no please….Thanks.
Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam
My ears perked up when I read of your femur involvement. I have steroid-induced AVN. Recently when walking, my knee broke and the X-Ray showed a very large bone infarction on my distal femur and multiple infarctions on my fibula. I’ve already had a shoulder replacement. Fortunately, I have had no leg pain after my knee healed.Were these spots on your femur referred to as bone infarctions? So far, I have been offered no treatment options other than to use a walker from now on to take the stress off my leg to prevent a femur fracture. I’d like a second opinion and after reading your blog, it sounds like a good idea. Any thoughts? I’m thrilled that you have had such success!
Yes the spots on both my femurs were referred to as infarctions. I had ‘dead patches’ of bone all over my femurs. The patches showed up on MRIs and bone scans. They tried core decompression on my right femur, but it didn’t help. At least not that I can could tell. It wasn’t until I went on blood thinners that my body started to heal. I discovered my clotting disorders after being diagnosed with AVN and finding a doctor who could tell me why I’d developed the disease in the first place. Have you been tested for clotting disorders?
There is a chance that if you are non weight bearing as much as possible and with the help of physical therapy that your body will heal itself, but if that is the case the process of rebuilding bone (reossification) can take years. In my case it took just over two years before I could walk ‘normally’ again.
Has the pain been getting increasingly worse? I would start aqua therapy as soon as you can to prevent muscle atrophication. It will take time to tell if being non-weight bearing is making a difference. I’m sorry there isn’t more advice i can offer. There just aren’t that many treatment options. Other than joint replacements, bone grafts, stem cell injections (this won’t work if the disease is in patches) etc. I’m sure you have read about all of that already. Having the disease in the femurs is rare. Obviously you can’t get your femurs replaced so there isn’t much surgically that you can do. I would, however, find out if you do have a clotting disorder. Contact Dr. Glueck (his information is on my site).
This disease completely changes your life and what you are physically capable of doing. If you can, for your peace of mind and for your body, try to take up swimming if possible. Keep your body strong. I was in a wheelchair for a year and in and out of it for another year and swimming was the only exercise I could do. It also kept me sane. I’m sorry you are having to go through this.
Take Care, Cassandra
Cassandra! I am thrilled for you! Your diligence has certainly paid off!
Hi, I have been researching serrapeptase lately and it appears to be nothing short of a miracle supplement.
Do you know of anybody who tried it as a way to promote osteogenesis of necrotic bones?
Thank you for your reply.
Hi, i have been suffering from AVN from last 2 years.Doctor adviced me go for CORE DECOMPRESSION SUGERY before TOTAL HIP REPLACEMENT. So i went under CORE DECOMPRESSION.
After the surgery i have try different treatments, at last i was recovering from AVN with HOMEOPATHY TREATMENT.
My hip bone tissue has increased( density) and i have stopped using pain killers and calcium capsules,just only using HOMEOPATHY TREATMENT.
Which doctor did u consult for homeopathy? Could you please share the details. My email I’d is firstname.lastname@example.org
Good to see your comments, a bit late though.
Any further improvement in your case please? I’m interested to know how it went and appreciate if you could share the homeopathy treatment details please. Thanks in advance…
Wow!!! I am happy to see the Improvement of your disease. And now I wanted to know that I am suffering from avascular necrosis of hip bilaterally with no bony degeneration or fractures or collapse of femoral head . is there any possible chance that I can be cured.