I'm 42, a female, have a neuromuscular disorder called Charcot Marie Tooth disease, osteopenia from the CMT, and osteoarthritis in my knees mostly (I'm a lot of fun huh?!). Other than those problems I'm healthy. My orthopedic surgeon, after 3 failed surgeries from what started as a fairly minor injury, did a patellectomy last year in an effort to relieve my knee pain that was (and is still) pretty severe. In addition to the pain, the patella was not tracking. Although there were only microfractures and other osteoarthritic changes to the patella. Anyway, it hasn't really worked. As I said earlier, my knee is still quite painful and now a new symptom. My knee completely collapses without warning. Often I fall because I really have no time to catch myself. I don't know it's giving out until I'm half way to the floor. I have been doing PT exercises for almost a year now in an effort to strenghten the quadriceps. The doc was hoping weak quads was the cause of the knee collapse. No luck. I now wear a KAFO in an effort to lessen the falls. That's fun , especially when it's 100 degrees outside! Anyway, now my ortho doc (unless the knee greatly improves) is talking about a total knee replacement in about a year. My other knee is in desperate need of a total because of severe osteoarthritis that has chewed away at my joint so much that I'm bone on bone now. My knee is constantly swollen and from time to time has about 60-70 cc's of fluid drawn off of it. And of course the pain is almost constant and mostly severe.
Sorry for the long bio.
My questions are, do you have a thought about why my knee is giving away? Even when I don't bump it or take a wrong step or anything like that that would cause it to collapse. Secondly, do you know of any new prosthesis' that are longer lasting? All of the orthopedic docs that I have seen, and I have seen about five I think, all the way from San Antonio to Austin and in between, tell me that I'm too young to have a knee replacement. I understand the logic in the reason (and it's been a while since anyone's said I'm too young, for anything! I kinda like that!). But the fact remain that both of my knees are killing me, and one of my knees keeps sending me south. Maybe there's a new knee out there that lasts longer. My quality of life right now isn't good, and I can't get any of the doctors to listen to me. And lastly, this is unfair of me to ask, but do you think that just maybe a total knee would stop the knee collapse?
Thanks so much for your help.
Unfortunately, I do not have a good explanation why the knee continually gives out. Even if you have been to several orthopedic specialists, I would consider continuing to obtain opinions - preferably at major academic medical centers.
I would assume that imaging has already been done - MRIs preferably, which can look at the structure and ligaments of the knee joint.
Regarding physical therapy, you can consider a referral to a physiatrist (rehabilitation specialist) which can help direct what kind of therapy would be the most helpful.
If there is evidence of osteoarthritis of the knee, you can consider injections of hyaluronic acid - which has been shown in some studies to be helpful.
Whether a total knee replacement can be helpful would depend on the cause of the collapse. This needs to be discussed with your various orthopedic physicians.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
I don't live too far from the Univerity of Texas Health Science Center in San Antonio. Maybe you've heard of it. It's a pretty good size teaching hospital with a lot of outpatient services. I've was there quite a few years ago for my feet problems brought on by the Charcot Marie Tooth. But any contact I might of had there are long gone. I don't suppose you know any orthopedic guys or gals there who I could see?
The last MRI I had was pre-second surgery last year. Come to think of it, the knee collapses started after the second surgery and they haven't stopped yet. Since then I've had three more surgeries, for a grand total of five fun filled surgeries! I'm so proud of that statistic I'm repeating myself! Sorry, just trying to make light of this silly situation. I have a bad sense of humor. Anyway, I think I need to ask my ortho doc for another MRI.
I have a lot of osteoarthritis in both knees. In addition to bilateral surgeries on my knees, I have had synvisc in the left knee and multiple rounds of steroids in both. Does this hyaluronic acid go by a diferent name because I haven't heard of the stuff. Can you tell me what it does to the knee?
Today I started a pain management program. I went kicking and screaming all the way but at the end of the first day, I think I'll like it. I'm going three days a week eight hours a day.
Thanks so much again for your help. I'll leave you alone now!
Your story reminded me so much of mine. At 35 my knees were ready for total replacement, but the rest of my body was too young. Finally, I turned 50 and we decided to buy a motor home and go on the road full time. So I had my first knee done in February and the second one done in May. We left the middle of June. I would not advocate having the surgeries so close together and don't let anyone even suggest that you do them together!That would be a big mistake. It is a very painful surgery and believe me, it is a year until you are glad that you had the surgery. My knees started dislocating at age 4 so life is grand for me now.
I'm trying to wait for my 50th birthday. That's the age my orthopedic guy wants me to focus on. He said that he would do the replacements sooner if I just couldn't take it. So I'm trying to ignore the sometimes dreadful pain. Mind over matter I guess!
Thanks for the warning about not to do the replacements too close together. I heard that was a really rough way to go.
At this point, I can't wait to have them though and I hope my surgeon is as apparently good as yours is.
How do you like RV'ing it full time? My hubby and I have a 30 foot travel trailer that we pull around from time to time for a little fun. It's nice to get away from the house. We talked about full timing it when we get older but I don't think we're full time types. Do you have a problem getting up the steps of you motorhome now that you have new knees? My knees are so bad that it's not hardly worth it by the end of the weekend after climbing those steps.
Anyway, thanks for your input! Have a good day.
I am sorry to hear about your knees. I don't have RA but my mother does. She had her knees done Right in 1989 Left in 1990. She fell on her hip in 2002 and twisted the knee in the process. Now with that said the knee pops out of joint. The operations to me only last for 15 years and they are alot of work. My mother is looking to have the knee re-done again and she is 62 full blown diformanity.
Although this is a topic that should be separtate has anyone ever lost movement in hands? Her Dr. just did a EWG test for carpel tunnel and came back negative. She currently takes methotrisic and predizone (spelling sorry) but looking for anyone else who has this problem also?
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