I have been hit with another diagnosis!
So not only do I have spina bifida I now have a rare disease called Kienböck’s Disease. It is basically a vascular necrosis of the lunate bone in your wrist which means your bone is dying due to lack of sufficient blood flow. I found out a couple months ago about the diagnosis and I guess I should start at the very beginning.
Late last year, I started developing pain in my left wrist and noticed that I had diminished rotation of my wrist. There was some swelling and some pain but manageable however, it really made me wonder what was going on because I had never felt anything like this before. Unfortunately at the time I was going to a general practitioner who decided to tell me that it was tendinitis.
Now most people get tendinitis of the elbow due to physical activity however, that is not the case for me. I am not a weightlifter, hard labor, or anything that would put this kind of stress on my hand. I do most of the housework, the cleaning, the cooking, the vacuuming, etc; but as for physical strenuous labor that is something that I do not do. So for me I was not satisfied with his doctor’s opinion about what he believed that I had. He put me on some steroids, which I absolutely hate being on, and an anti-inflammatory and told me it should clear up in about two weeks.
Well in two weeks it obviously did not clear up and it actually was getting worse. So he ordered me to go to an orthopedic doctor to see if the doctor could find out more info about what was going on with my wrist.
I did go and see the orthopedic and we took an x-ray and found out that’s my lunate bone in my wrist was practically dead. It is Kienböck’s Disease, which has four stages like cancer and I was at stage 3B. So next was a referral to an orthopedic hand surgeon.
Fortunately during this time I was able to go back to my normal internal medicine doctor who has always been wonderful, both him and his staff, with helping me figure out and navigate my way through medical diagnosis. So we decided that the best hand surgeon for me would be at Andrews Institute in Gulf Breeze Florida.
After a waiting period of a couple weeks during which I had an EMG done by my neurologist, I finally got an appointment with the hand surgeon. At this point I had no clue what was going on. I had never heard of Kienböck’s Disease nor had any of my friends who are in the medical profession. The surgeon looked over my x-rays and requested that we get a CT scan and MRI done of my left wrist. Having insurance is a wonderful thing however, it can create a lag in medical testing, so the testing took a while to get done and sent over to the surgeon.
We discussed many options of what kind of surgery to perform so that my hand did not deteriorate into severe arthritis and that the bone would not break up on me and make my ability to use my hand worse. So after a long discussion and looking at the options while taking into consideration my age and needing to be able to use my wrist, we decided that the best operation for me was a proximal row carpectomy.
So on April 28th 2016 I had the PRC performed. They removed 3 bones including my lunate that had broken up into pieces and capped one of my bones with a metal plate. I wore a soft cast for 2 weeks and now I’m in a hard cast that I’ve had on for about a week. I will note, I will never do this in the summertime, in the South, ever again because the cast is unbearable in the heat!
This surgery hopefully we’ll give me about 15 to 20 years before I have to have a complete wrist fusion. The surgeon and I both hope that within the next 15 years there are more options for the surgeries where we would not have to actually have to do a wrist fusion. So I am praying that technology will advance for this disease in the next 15 to 20 years.
However, I know that sometimes even if you don’t want to do a certain surgery, sometimes the best course of action for long-term care is a surgery that you might not agree with.
There are no known reasons as to why people develop Kienböck’s Disease, even though there are many speculations throughout the orthopedic community. However, there has yet to be a significant study done as to why people develop this disease. The ages range from early adolescent to adults and it does not discriminate. Just like spina bifida it doesn’t play nicely and everybody is different even if they are in the same stage.
I know that this is going to be a long road of recovery and physical therapy for me to get back the use of my left hand however, I will do whatever it takes to beat this!
Just be aware that there are many diseases and birth defects out there that have no explanation as to why they happen and they’re very rare.
Understanding your condition is the most important thing to be able to be your own medical advocate. I have read up on so many articles about this disease so that I can be fully aware of what I need to prepare for in the future. This isn’t going to stop me and it is not going to define me. It will only make me stronger and I will improvise, adapt, and overcome!
Shuffle on my friends!!!!!