This journey of mine started in August 2011. I had been experiencing knee pain on my right side for about two years straight and on and off as a kid. As I was born with Cerebral Palsy I thought that this was just something that I was going to have to live with. When I finally had enough I went to my primary care doctor.
My primary care doctor did a full work up on my knee. He said that he could not find anything wrong but ordered some x-rays. I was also started on a NSAID (Non steroidal anti-inflammatory drugs). We decided to give this about a month before taking in farther. I heard from my doctor after the x-rays were taken. Everything was fine with my knee. If I was still in pain we decided that it would be good to see an orthopedic specialist in 4 weeks.
Now September 2011 is here. After giving the medicine a about four weeks to work. Things felt different. Less pain, however there was something new. It was not pain but more of a feeling. My knee felt like it was rubbing on itself. It was not a good feeling. So it was decided since I was still in pain and had this new symptom it was time to see that specialist.
October 2011 and off to see the orthopedic specialist. I decided that I could handle going by myself to this appointment. The doctor did a full exam of my knee. Once again he found nothing wrong. Great. He decided to examine my hip. That was a shock to me because I had no real hip pain ever. After examining my hip he said it was a little stiff and would like to ordered some x-rays. After what felt like forever in comes the doctor with the x-rays. I just had a feeling that something was not right even before he explained anything. He showed me the x-rays and told me that I had something called hip dysplasia. First time ever hearing this at 27. He did explain that my hip joint was bone on bone. That meant that there was no cartilage left in the joint that’s a very bad thing. He also said that I had osteoarthritis from the bones rubbing together. He just told me many times that I needed surgery. It was decided that there was nothing else that he could do and was sent off to a pediatric orthopedic specialist. You might ask how I felt at that moment. I was scared and sad. I didn’t really know what hip dysplasia was. I am 27 how can something be so wrong with me. I was very mad at my self for not getting my knee looked at sooner. Since I knew nothing I headed home and told my parents what the doctor had told me and started doing research on the internet to get ready for the next appointment. Thank goodness for the internet. Oh yeah I learned a great lesson that day. Always take someone with you to a doctors appointment. I wish I had.
After doing a ton of research I felt ready to go on to the next specialist. I had learned that there were really two choice to help with the hip dysplasia. A Periacetabular Osteotomy (PAO), that is where the cut your hip joint and position it in the right place and screw it back together. The other choice is a total hip replacement (THR), where they remove your hip joint and it is replaced with a new one that can be made of different materials.
Later in October I was off to see the pediatric orthopedic specialist. I had learned my lesson and took my Mom with me this time. This doctor came in after looking at my x-rays and said that there was nothing he could do. He explained that there was to much damage done already. The only thing that could be done was a THR. Dang it. Since there was nothing he could do it was decided to send me to my third orthopedic specialist that did hip replacements. Hearing that I needed a hip replacement at 27 was very sad and scary.I took this news very hard. I felt awful, I was depressed and didn’t know what else could go wrong. Headed home once a gain and did all the research that I could on THR on young adults. I found Happy Hips, this is a support group for teens and young adults with hip dysplasia. I also found a support group on Facebook. I learned everything I could before I went to this next appointment. I even learned about something called resurfacing. More about that later.
November 2011 finally arrived off to see the third orthopedic specialist. I had actually met this doctor before. He is a nice guy. He explained to me and my Mom that I did definitely needed a hip replacement. He said that he could do it but had never really done one on someone my age. After talking to him for awhile I felt a little better about the hip replacement. There was concern brought up at this point about my Cerebral Palsy (CP) being on the same side. Let me explain the CP a little. It is something that I was born with after being born 3 months premature. It has left the muscles on the right side of my body weaker then the ones on the left. That is all. So we talked about how a cane would help with the limp and rock that I had because of the CP. As I had done my research I asked if he knew any doctors in the area that did resurfacing. He said he did. We thanked him for his time and he refereed me to my fourth orthopedic specialist. I will say that it was my choice not to have this doctor do the surgery because he had never done it on anyone my age. He would have done it if I let him. I was not comfortable that he had never done it on anyone my age. I did get the cane and learned how to use it. As the months went on I got pretty good using it and used it when I needed it.
Welcome December 2011. Off to see the resurfacing doctor. First to explain hip resurfacing is different then a THR. Resurfacing is where the doctor shaves down the ball part of the joint and places a metal cap on it. He then reshapes the cup part of the joint and places a metal liner in it. So resurfacing is considered a metal on metal replacement. So off to see this doctor. He did explain that I was not a good candidate for hip resurfacing. This was because I am a women that wants to have children. Metal on metal replacement can run some risks to fetuses so doctors do not like to put them in women. So once again back to the hip replacement. This doctor said yes that I needed one. However he wanted me to loss 100 pounds before he would do it. He even wanted me to have a weight loss surgery. Yeah that was not happening. There was already enough going on in my life. I didn’t really like this doctor so I didn’t want him to do the replacement.
Back home again. Now I had no one to do the hip replacement and didn’t know if I could have one done. Well I hit the internet once again. I was looking for doctors in my area that had done hip replacements on young adults. I keep running up short. I finally expanded my search to close by cities and found one. His name is Dr. Michael Clarke. After a few emails it was decided that he would see me.
January 2012 is finally here. I had my 28 Birthday. I also had started physical therapy. More about that in the next post. Finally time to see Dr. Clarke.
This is end of the start of my journey. I will write the next post on the meeting with Dr. Clarke and the second part of the journey as this post has gotten a little long. Read the next post because the journey continues.