Why are my bones bumpy?

I was born with a rare bone disorder called Multiple Hereditary Exostoses (among many other names). Basically, instead of growing long and straight, my bones grew bumpy, twisted and with "tumors". The disorder can be a spontaneous mutation but usually is inherited, about 50% of the time. I got it from my mother, who got it from her father. Luckily, neither of my children have it. Some of my mother's siblings have it and so do a couple of my cousins. I have a moderate case, many people have much more pain and disability than I do, many have less.

The deformed bones themselves don't hurt usually, but they can damage or pinch soft tissue around them. That can cause from mild pain or tingling to severe injury that requires surgery. I started experiencing pain in about 3rd or 4th grade, and that is also when I started to notice that I was different than the other kids. I was 14 when I had my first surgery to have one of the tumors, or spurs, removed. I had 2 removed during that surgery and 8 more in several surgeries over the next 12-13 years.

For many years I had no health insurance and just had to suffer through any pain or disability that it caused. Finally a few years ago I was awarded SSI and was able to start receiving medical care again. I had another tumor removed from my inner thigh area, right about the left knee in 2010 by Dr. Richard O'Donnell at UCSF Mt. Zion.

My legs bones aren't straight, so I am pretty knock-kneed (this is fairly common in MHE). Over the years the outer part of my knee joint has worn out much faster than my inner knee cartilage. I am having a lot of pain from that and from all of the deformity to the head of my fibula (the thinner lower leg bone) lately. The doctors discussed a knee replacement but are worried that a nerve that runs along the outside of my knee in that area would be damaged, causing drop foot.

I have spent the past 2 years trying to find a doctor that could help me. It is getting more difficult and painful for me to walk (which is resulting in weight gain, which is resulting in depression) every day. I think I have finally found a doctor that can help. They want to try to straighten my leg a little bit.

So far the plan is to cut a wedge out of my femur, on the inside above my knee, and put a plate in to help hold it together. I go in to talk to the doctor again on Feb. 4, 2014 and I believe we are discussing scheduling the surgery. The only problem is I am also having trouble with my right wrist, which is deformed from the MHE.

I have been to see the wrist specialist recently as well. I will most likely be having surgery on my wrist soon too. I need to speak with all the doctors to find out which I should do first. The wrist will heal much quicker, but might be needed to use crutches for the wedge osteotomy. That is going to be a scary time for me, but hopefully it won't be as bad as it sounds!

This is a strange and scary time for me and a friend suggested I blog about it while I am experiencing it. I don't know if anyone is interested, but it might help me cope even if no one else ever reads it.