
| barbara n wrote: |
| hello, I hope that you are still periodically checking the posts...I realize that it's been a year since you posted last.
I, too, had slipped epiphysis in both hips at age 13. Five surgeries and 7 pins to correct it. I am now 37, and will be going in for a total hip replacement in 4 days. I have been hoping to find someone to talk to that has had this same disorder...It seems that most of the people having hip replacements are solely becouse of arthritis. I, too, have been struggling with pain and mobility issues for years becouse of this desease. My left hip is worse than my right. The rotation in this hip is so bad that my foot splays out sideways, and this leg is quite a bit shorter due to the arthritis that has set in. Becouse of the rotation, I have been having pain in my foot, ankle, knee and lower back...In addition to the hip pain. My activity level has severely declined over the last 7 years, each year getting worse. I still make myself be active, but am in pain every day. I am wondering how you are doing...How has this last year treated you? I am very anxious to compare notes... |
| barbara n wrote: |
| hi jason (or is it anthony?)-
wow, thanks so much for your reply. I really can't tell you how much this message board means to me. My whole life, I have never talked to anyone else with this disease. It is so nice to know that somebody else understands what i've been dealing with for all these years. You've hit on exactly the thing that has driven me to decide on doing this surgery now...The impact that it has on the rest of my body. Personally, I could probably go a few more years with my hip. It isn't great (not exactly round, and has soft tissue damage), but it works, and the pain is mostly tolerable. Only sometimes does it flare up severely. But it's the pain that it is causing in the rest of my joints that I just can't live with anymore. Do you have the huge callous build-up on your outside toes from rotating wrong on your foot? I hate that. I've gotten to where I have to concentrate on every step when I walk, to make sure that I am rotating my joints as properly as possible. The way I see it, is my hip is already a lost cause. I might as well try to save the other joints in that leg. I'm sorry to hear that the last few years have been hard for you. As far as the physical part goes, I also started deteriorating fast in my 30's. You are in your early 30's, correct? Seven years ago, I was running races with my kids, and riding my horses for hours on end. Two years ago, my hip got so bad I had to have a cortisone shot in it (which really worked very well). I have had constant pain, sometimes intolerable, for the last year. Anyway, I am sorry to hear that you are progressing the same as I have. It is amazing how much pain we put up with in our lives, isn't it? As far as the emotional toll, I can totally understand that as well. I was fortunate to find my soul mate at a very young age. We've been married for 17 years now. He is very supportive, and will be working from home for several weeks to help take care of me and the family while I am recovering. As hard as this disease is, I can't imagine having to go through it alone. I think it does take someone special to look through the limp, and understand when you're in pain. All that means is that you will end up with someone special! I am also a firm believer that there is someone for everyone. And when you least expect it, she will be there. You just have to have faith, and keep your eyes open. How much had your joint/s slipped before they were pinned? That's awesome that the arthritis hasn't set in yet for you. Although, it is probably pretty frustrating for you that your hips are still in relatively good condition...Because you can't get them fixed yet. I've gone back and forth on whether it is the right time to have this surgery. Most people who get this done have arthritis so bad that they can barely walk...Can't tie their own shoes or go up stairs. But then, most people who have this surgery do have the rotation issues, either. Yes, I also hate this disease and what it's done to my life. When I was young, my doctor told me not to worry about the future. That I might find myself in a wheelchair when i'm an old lady, but that's so far off that it's not worth worrying over. So, needless to say, I was shocked when I was told at 35 that I would be facing hip replacements in 2-4 years. I mean devastated. I cried for days. I thought this whole disease was behind me...That it was just a distant part of my past. I am just now coming to grips with the fact that this is chronic. That it will never go away. That I will be dealing with this for the rest of my life. And I can't believe what you said about wishing that you had been taken to a doctor earlier. Being as we did not have computers when I was a kid, I have never researched anything about this disease. Until now. I just found out this week, literally, that if you catch this disease in the first few weeks, light traction will usually fix it! What!! I looked up my hospital records (i have copies of all of them), and read that I had symptoms for 9 months!! I went like 6 or 7 months before my mother took me to the family doctor. He did not have a clue, nor did he think to take an x-ray or refer me to an orthopedic. His advice was to go home and excersize!! He thought it was probably because I was overweight. Well it was partly because I was overweight, but excesize was the worse thing I could have done. But I did, for months. Until all the running made the pain unbearable and I finally saw a real doctor. Man, when I read all this I was so mad...At everybody! My mother, the doctor, the school nurse...I just felt like everybody failed me. And now I have to pay the price for poor parenting and sloppy doctors. Man. (sorry to go off there...Still licking the wounds a bit) yes, I am getting the ceramic hip. Sounds like it's the best way to go if I want to be active. Thanks for the words of encouragement, really. It's kind of a rock-and-hard-place thing for me right now. Of course, i'm excited to have my foot pointing forwards. And, hopefully, take the stress off of all of my other joints. Yes, I can't wait to go for a walk, and not have to think about anything besides what a beautiful day it is! On the other hand, I am older and wiser than I was for my first surgeries. I don't heal as fast, and am fully aware of what they are going to be doing to me. Lump in the throat scared! There are limitations to the new hip that i'm not real happy about. I can never run again (i love jogging and running). That breaks my heart. But, what the heck, I can't do it comfortably now anyway. I guess those days are just over. And I can't ski. Not that I am a skier now, but my son is passionate about the sport, and I was really hoping to share the experience with him once my feet were pointing forwards. Oh, well. I can still ride my horses. That was really the big one for me. I plan on riding for many, many more years to come. I am able to ride now, but only for short periods of time, and it is uncomfortable. Well, I think i've rambled on for long enough now. Thanks so much for the reply, it's so good to "talk" to you! Please keep in touch!! |
| barbara n wrote: |
| good morning, jason,
well, it looks like we both have some venting to do! It's nice to let it out, huh. I've never heard of the osteotomy before now. I will do some surfing on it. The cortisone shot only helps if you have arthritis...As it reduces the inflamation. Doctors are hesitant to do them much, as they can damage the soft tissue in the joint. But once a year or so for a few years is o.K. So, next time you have x-rays done, if the doctor can see fluid build-up (a result of the bone-on-bone irritation), then I would definately ask for it. When I had it done, my hip pain was so bad that I was literally in tears every day, for months. I just couldn't take it any more. The relief wasn't instant, it took a week or so...But it did buy me two years. Of course, the shot did nothing for my rotation/foot pain. I just went to a foot/ankle specialist this winter...To see if there's anything that they can do for the pain. Come to find out I have arthritis starting in that foot, too. I had broken that ankle at 18, and arthritis is setting in. Well, the sideways rotation that my hip makes that foot do is just making the whole situation worse. They casted my foot for orthotics...Ever heard of them? It's just a contoured supportive insole that slips inside your shoe. I'm still in the adjustment period, gradually increasing the amount of time that I wear them each day. My foot really appreciates it! All these years, it has been compensating for my hip. Well, now it is finally allowed to move as it was intended. My foot is already feeling better, though strangely enough, I can feel more pain in my hip now. Well, anyway, I thought i'd mention the orthotics to you...It might be a way for you to relieve some leg/foot pain. It's really hard on the body to be so out of alignment. Our disease not only affects the hip, but the entire body. Anything that you can do to take the stress off of the rest of your body will help. And one more thing I thought i'd mention...Sounds like it might be just the right thing for you. Next winter I am having my right hip "cleaned up". It has spurs and healed with a 40% slip, but doesn't have the arthritis in it, so there is not much soft tissue damage. They are going to pop my hip out of place and clean it up...Make it round again, shave off the burrs and such. They couldn't do this with my left hip becouse the arthritis and soft tissue damage is so bad. They wanted me to get the worse one done first. But hopefully, there will not be much more damage to my right one in the next year, and I can do this "overhaul". It will buy me many more years of use, and should restore alot of the rotation problems. I'm very excited about it. It is not a super common proceedure, so if your doctor doesn't know about it, I would shop around. I shopped for doctors until I found one that I liked and trusted. It seemed to me that most of them were always in a rush...They wouldn't just sit down and talk to me. I ended up at the mayo clinic. Which real nice, because the doctors all work together there. The doctor that is doing my hip replacement is not the same one that will be doing the overhaul. They all have specialties. Anyway, I will find out the scientific name for that proceedure when I am in there next week and let you know. I just looked at the clock and realized that I am running very late... Talk again soon... Barbara |
| barbara n wrote: |
| hi jason,
back from my apt...Sorry I had to run earlier. The hip that I am going to have "cleaned up" looks pretty good on x-ray. Of course, there's a few spurs, and the slip caused a lump at the base of the ball that is preventing rotation. But over all, the joint is fairly round and spaced well. You know, there is one other procedure that i've heard of, called resurfacing. Have you heard of it? It's where they just resurface the ball...It's a lot less invasive than the total replacement. The doctor that I decided on wasn't personally comfortable enough with it to consider trying it...I think it's a relatively new procedure. But if you surf on the subject, you'll find lots of sites about it. Anyway, if your ball is too flat to "clean up", then maybe a resurfacing would work. Just a thought. That's great that you are still so active. It would be easier to give into the pain and not go to the gym, or do the activities that you enjoy. But a little bit of pain is worth it! Hiking in the mountains is a something that we really enjoy as well. That is actually one of my goals...To fix my legs good enough that I can do some deep woods hiking/camping out west. Are you still biking and hiking? For me, I can't do the things I like for as long, but I still try to get out there and do what I can. I figure, i'm going to be in pain anyway, I might as well have fun! By the way, how many pins did you have put in? I hear they're trying to stick to one now...I had 4 on the left, and 3 on the right. I've just recently read a little about avascular necrosis...Sounds terrible! I guess it could be worse, huh? Well, I have plenty to do before I leave for the hospitol in 4 days! So I must get going... Have a great day, jason! Barbara |
| barbara n wrote: |
| hey jason and co.
Well, I had my left hip replaced this week. Pretty crazy. I still can't really believe that I did it! I'v been home for 3 days now. Not a whole lot of pain, not like the first few days. The coolest part-is that when I walk, my foot automaticly faces forwards! My foot hasn't pointed forwards on it's own in 2 decades. That, and he lengthened it a bit so that my legs are now the same size. There was quite a bit of deformity in the bone becouse of the scfe, both in the femur and in the pelvic. They expected this, and it just meant that surgery took a little longer than usual. I got the ceramic hip, which i'm pretty happy about. I think the hardest part now is going to be the wait. I'm on very limited mobility for 2 months. Yep, that's gonna be the hardest part...Keeping patient. Well, just wanted to let you know that I did it. Peace :-) barbara |
| gocat wrote: |
| it took 4 months for the doctors to realise what was wrong with me... The pain started in my knee and they were only xraying my knee till my father insisted they xray the whole leg. Next thing I know I am being carted off to a ward and explained I will have an op the next day.
I remember feeling so relieved as I had spent 4 months with teachers and so called friends at school saying I was putting it on. I couldnt walk and still was being told I was putting it on... No one apologised for saying I was putting it on. |
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