Hip pain

For a couple of weeks now my right hip has been feeling like something is "catching" when I move. When I sit it feels like something is being pulled in my groin area and it starts to ache after a while. When I am walking, if I move a certain way it feels like my hip is giving out and the pain is more in my backside. I have a moment of panic because it feels like I am going to fall. Because of how twisted and uneven my legs are, my back has started really being a problem for me as well. One of my discs is herniated along with arthritis and exposed/pinched nerves in my spine. The past 2 days my hip and my knee have felt connected, they both hurt at the same time and it feels like a string of pain goes between them at the same time.

My hips next to nonMHE hip xray (gotten off the web). The femoral necks of my hips are thicker and covered in bumps that catch on soft tissue, like tendons, nerves and veins. 

I went to a local protest against some developers today but got the time wrong and showed up about 90 minutes early. I stood around waiting for as long as I could, but ended up going home before anyone else even showed up. I just couldn't take the pain anymore. I want to cry so badly. I am used to being able to do a lot more than I can now and it is frustrating. I feel so worthless and hopeless on days like today, the pain and frustration are overwhelming.

I am also having issues with my pain medication. I have a lot of stomach trouble and can't take many things. I am prescribed 20 mgs of methadone and 20 mgs of flexiril and 500 mg of naproxen. I also use medical cannabis but it is so expensive I can't afford enough for complete relief. This is the most effective combination that I have ever been on, but the methadone is causing chaos with the rest of my body. It is a bit of a trade off, either I have pain or severe nausea for 12-18 hours to relieve it.

Besides making me feel really sick to my stomach for the next 12+ hours, it also causes me to be more dehydrated. Somehow, at the same time it also increases fluid retention in my legs (which is a chronic issue too). I have gotten so dried out from the methadone several times that I was constipated for a week, but it was regularly 3-4 days. Recently I started taking it again and my doctor gave me some natural stool softeners. They seem to help a little but not enough. I also have to deal with a severely really dry mouth. It is harder to study or even hold a conversation because of the mental cloudiness it causes. They also make me itch all over and nod off to sleep any time I sit still for a few minutes. That is really embarrassing in class and dangerous on the bus!

I see Dr. Saam Morshed at the UCSF Orthopedic Institute on Tuesday to talk about an upcoming surgery. I am going to have to mention the hip issue to him. The surgery is to straighten my right femur just above the knee to attempt to help relieve some knee pain I am having. The issue with my hip might complicate things even more (seems to be the story of my life). I really hope it doesn't, I want something to be solvable for me at least once in a while. 

I have decided that the knee and hip problems are more urgent than the right wrist issue, so I definitely want to have this wedge osteotomy surgery first. I am concerned about the straightening procedure though, it is much more complicated than the simple tumor removals I have had done in the past. I usually don't have much concern, the doctors have always done a good job and I healed very quickly. The last surgery was the most recent one though, and I healed much slower and the pain was greater than the surgeries I had years ago.

I am getting anxious to hear what the doctor(s) has to say on Tuesday. I want to get going with this already. I have been seeing doctors and getting passed around from one to the next for almost 2 years over this same issue now. Time to stop talking and start taking action. 

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.