What’s worse than having one bum hip? TWO bum hips! I have acetabular hip dsyplasia on both sides. I also have a femoral acetabular impingement (FAI) on one side. And, I have something wrong with my sacro-iliac joint. 🙁 [Have no idea what this means? See my original post.] Unfortunately, I’m not much closer to having a plan of action yet either.
I did my orthopaedic surgeon tour of the east coast last month. First, I went to Richmond, where I saw the doctor that my doctor in Roanoke recommended.
Then, I went to Philadelphia to see the surgeon that I researched and set up an appointment with. I am so glad that I did this, because I really liked this doctor. He noted that I also have an impingement.
He ordered a sacro-iliac joint injection for me and also wanted to refer me to a rheumatologist. He doesn’t think I have rheumatoid arthritis, but wants to make sure.
Everyone agrees that I have hip dysplasia and one doctor said it’s my choice as to 1. Artheroscopy 2. Total Hip Replacement 3. Periacetabular Osteotomy (PAO). The doctor in Philadelphia doesn’t think hip replacement is an option because my sockets are too shallow and it wouldn’t work. He also thinks it would be worthwhile to to try the scope surgery first. There’s no guarantee that it would work, but the reason he thinks we should try it is because I have a clotting disorder and doing major surgery poses a risk to me. However, the more I think about it, I’m not at all convinced that the scope surgery is the way to go because I hurt equally on both sides. I feel like all it would do is repair the tendons and give me range of motion back, which I don’t care about at this point. Also, after talking to people with dysplastic hips who had this surgery, it either didn’t help them or it made them worse. No thank you. And, why delay the inevitable?
In the meantime, things are just going downhill. My life pretty much revolves around this problem and my pain right now. It started with loss of movement, then pain after lots of walking or exercise, then pain after minimal walking and now…pain just doing nothing, like sitting at work or lying in bed. Both hips hurt, the tops of my thighs hurt, and my lower back kills me! Also, I have had a few weird episodes where I could hardly walk or stand up straight and was in extreme pain — I think a pinched nerve.
It makes it hard for me to want to go anywhere or do anything. I don’t want to be far from my couch, ice pack or heating pad.
I had my sacro-iliac injection at the hospital the other day. I didn’t really know what to expect and wasn’t worried about it. It turned out to be pretty awful. Putting a needle into your pelvis doesn’t feel very good. And, I’m not a needle-phobe. I’m the injection queen — I have had like a million of them, sub-cutaneous, intra-muscular…in my belly, my arm, my hip. But this was a different story. I was lying down in the CT machine so they could guide the needle, but it took forever and I think the doctor had trouble and while rooting around in there, it hurt so bad. I hurt in places I didn’t know you could hurt. Now, we have to see if it helped.
And, I’m waiting to see the rheumatologist before we can move forward. What an ordeal setting up this appointment turned out to be. Nobody in Roanoke would agree to see me or if they did, it would have been a three month waiting period. Nobody cared about my situation with trying to speed things up to get this over with before the babies arrive. Thank goodness, the fine folks at UVA agreed to see me and worked me in for a five week waiting period. So, I go there on July 30th.
For a while, I just thought this was a pain in the butt, but not a big deal. Now, it’s kind of a big deal. It’s scary to have so much pain and not be able to do anything about it. It’s scary to face MAJOR surgery with a 6 month recovery period. It’s scary to know that my pelvis will be sawed into pieces. Scary that as soon as I recover, I have to go and do it all over again on the other side. And, scary knowing that I could face clotting problems. Clotting problems sounds pretty benign, but it’s not. Pulmonary embolisms are no joke.
So, while I want to “fix” this and move on, I’m pretty scared, too. And, while I previously hoped we could schedule surgery over the summer and have recovery under way before the babies get here, that is looking less and less likely.
As always though, I realize it could be much worse. Not one moment’s peace though. I just want to feel normal for once.
So, any and all prayers are welcome. Pray for relief from pain and for guidance and wisdom on the tough decisions I’ll have to make in regards to surgery.
4 Comments
I am so sorry Whitney. So sorry for the pain and that you might have to recover with two small babies. I hope you get some help!!! And I also pray for wisdom as to do it at all… sending love and support…
I have the same issues. Who did you see in Philadelphia?
Hi Laurel. I am so sorry. I saw Dr. Javad Parvizi. Good luck to you! Are you in Philly? There’s another doctor there that everyone recommends too, but his name escapes me at the moment.
I live about thirty minutes north of Philly, but I am also not too far from New York City. I’ve heard of Dr. Parvizi. I’ve had pain for nearly six years and am at my wits end! The last two years have been a nightmare. I just learned I have bilateral FAI and hip dysplasia. Sigh. Would you mind emailing me at laureladelman@gmail.com (so my info doesn’t post). I would really appreciate it 🙂