Born without ACL's

[jeremyglas]

I read a post for user Belle about not being born with an ACL. I too was born without acl's in both my knees. My knees frequently slide around as I walk, run, jog or cut and it is very painful when this happens. If anyone has similar issues I would enjoy discussion about this topic. I am 26, male and live in the states. Over time muscle surrounding the ligament grew larger than normal to over compensate according to a doctor and I found this out my senior year of high school after going down hard on the basketball court. Any comments are welcome

[jathib]

I'm curious why you wouldn't have ACL replacements? If your knees are sliding around you are going to do a lot more damage to your knees. I walked around without an ACL for 17 years and seriously trashed my knee.

[jeremyglas]

I went to school on a golf scholarship in college and the knee specialist I saw requested a more stable brace instead of surgery. I wasn't totally sold on surgery since he wasn't quite sure how I continued to walk without having pain. Pain only comes when it slides. I should have something done, just not sure who knows best. I kept thinking if my knee has slide around for years, what is stopping it from sliding again and tearing a replacement acl. Thanks for the post

[jathib]

If your knee is sliding around it's because there is no ACL to hold it in place. That's what the ACL does. Once that's replaced it should stop sliding around. Yes, of course, if you can tear the ACL God gave you playing sports then you can tear the one it's replaced with but why worry about that?

I know from experience that all that sliding around is going to damage your knee. That's especially true if it causes pain. That means something is getting hurt. In my case, it was my meniscus which got seriously trashed from my knee sliding around. That torn meniscus turned out to be a far more devastating injury for me. My ACL was eventually replaced but my meniscus was removed a piece at a time until I needed a partial knee replacement. My new ACL is now 18 years old and still strong.

Your "knee specialist" doesn't sound like he's too on top of things if he thinks you can't walk around without an ACL and not have pain. You need to get a few more opinions from other orthopedic surgeons. You also need to get an MRI on that knee to see how much damage you've done.

[lennyk]

everytime your bones slide around, they are basically rubbing on each other with friction that they were not designed for along with the meniscus.
The smooth cartilage surfaces will lose their smoothness and start to abrade and it will just get worse.
The sliding around probably wont affect you much since the cartilage is a good few millimeters thick
but when it starts getting worn you will know and regret not doing something about it earlier, trust me.

I have heavy wear on my knee due to torn meniscus twice and its now getting into affecting me on a day to day basis. It basically sucks now to have to manage pain and watch every step and be careful when running in the rain.

[mjaffe]

Hello, I realize this is a long shot as I am replying to a post you made EIGHT years ago on the Kneegeeks webpage. I found your questions on a thread I was searching about being born without ACLs. You wrote that you too were born without ACLs. I have a five year old daughter who also was born without them. The doctors at the hospital had never encountered this situation and therefore have not criteria for proceeding with treatment or knowledge on how a child generally develops without this important ligament. I have been searching for years to find another individual or family who has a child in this condition. I have quite a few questions for someone like you who has lived years without this ligament. I am curious how you have managed over the years? My daughter is now five. The laxity in her knees, her surgeon believes, allowed her to get into quite a twisted position en utero so that when she was born, her knees with bending the opposite way which also caused her hips and feet to be dislocated. She has had surgery to realign her feet and major hip surgery. We know she will not be a candidate for knee surgery until she is done growing at around 14 years of age. Despite all of her challenges...she is one tough cookie.

Thank you for taking the time to read this and possibly for your help.

Megan

[jeremyglas]

Hi Megan,

It is so wild to even get this message. I just got an email about this and frankly forgot about this post I made. Yes I would be happy to help and talk to you about my knees, experiences etc.

I'm now 29 and still without ACL's, walking fine with no pain.

Best regards,
Jeremy

[aplummer]

This post if for mjaffe -

I know it has been awhile since you posted your concern so I hope you see this. My daughter was born without an ACL and just had surgery this last week. She was born with Fibular Hememilia which means she has a shorter fibular bone in her right leg and she is missing toes. My daughter is now 13 and very active. We went from thinking that she may never walk to her being one of the most athletic girls in her grade.

My reason for posting this is because if your daughter grows up and becomes active in sports you might want to rethink her NOT having an ACL. My daughter was playing on a traveling softball team this summer that had a very rigourous schedule. She was complaining about her knee hurting so we would ice it every night. By the end of the summer she had developed this knot on the back of her knee. We took her to her doctor (Dr. Rich, Shriners in St. Louis) and she was going to remove it until she looked at her MRI.

Her MRI was showing that her meniscus was in bad shape. The cyst was actually fluid build up from the meniscus being in such bad shape. So they preformed an arthoscopic surgery on her knee to fix that. While doing that surgery we found out that she didn't have an ACL. Because she didn't have an ACL her meniscus was being worn down. Your ACL keeps that from happening and if you allow it to go on it can lead to arthritis when they are older.

They ended up using a cadaver ACL. She just had the surgery on Tuesday. Our surgeon has told us that they are finding that children with leg length discrepancies are born without ACLs. I'm not saying this is what happened to your child but it might be something to look into.

We also questioned why the ACL wasn't causing her major problems up until now and their response was that when she was doing pivot moves and things of that nature, she didn't weigh enough to feel the instability. Now that she is 13 and is at 100 lbs she is feeling it.

I know this is a long winded story but this process has taken awhile to happen and she missed out on her whole 8th grade year of sports. Which in the long run is not as important as her being healthy. If you have any questions let me know.

[Valerieco]

I found out today that my 10 year old son is missing his ACL in his right leg. He also has a leg discrepancy. He is getting a lift in his shoe now and I was told he will need surgery when he is older. He plays competitive soccer and I am concerned about damage he can do to his knee. Any advice from parents who have gone through anything similar would be appreciated. Thanks.

[Valerieco]

Or anyone who has gone through something similar, of course.

[stellabee]

Hi Megan,

This is a long shot for me now to reply but I just saw your post on this site as I am frantic for answers that doctors can't give me. My daughter has a lot of hyper extension in her knees, specifically her left knee. She is now two years old and there are still no answers. We have seen geneticists and a few orthopedic surgeons. They keep telling me she has a syndrome of some sort but she is still too young to be able to tell what is the situation with her knees. She also has quite the curvature to her feet as they can turn inward quite a bit along with her toes being very angles inward. She walks terribly!!! She falls constantly and sometimes I forget how bad she walks until I see other children her age walk. She has now begun to hold her left leg perfectly straight most of the time while walking because it appears if she doesn't it bends to far in and doesn't seem to stop-thus leaving her to fall. It almost is like it is giving out on her. It is tough for me to write this, because it is horrible to see your children go through this. My question for you is did your daughter display similar issues? Thank you in advanced for responding.

[Imatoz]

This seems to be a seldom used conversation but here goes...

My daughter was born without an ACL 13 years ago. We've known almost since birth because her left knee was completely hyperextended as she was born. She was casted at two weeks in order to get her leg bending in the proper direction (being a dad with a casted infant in public was not fun, at all) and by six months she had about 90 - 95 degrees of flexion. Her specialist back then (So. Calif. Kaiser) had a few patients similar to my daughter and explained without even an MRI that she had a syndrome, a missing ACL was a common symptom. As it is, she's extremely flexible - but we have never restricted her activity in anyway. She is very much into gymnastics to the point of being on a team. Her flexibility is the envy of her teammates - with the exception of the lack of flexion in her affected knee (still only at about 95 - 100 degrees).

Like some of the other posts I've read here - ice doesn't help. She had some physical therapy a couple of times and the first round helped a lot. I think the second round set her back because the folks that time didn't understand her situation.

We have different health insurance now and her new specialist has proposed an ACL construction as a result of my daughter's increasing complaints of slippage and pain. Of course, although the surgeon is very skilled and has reconstructed countless adolescent ACL's - a full construction in a knee that never had an ACL in the first place, well that would be a first.

Has anyone in this group had an ACL construction in Southern California and can recommend a surgeon? How have these surgeries resolved? Successes, set backs, poor outcomes? What say you all?

Thanks

- Martin

[NoACLproblem]

I don't know if anyone will read this but I'm a similar situation. I was born without an ACL in my right leg and I've always been very active. I play 3 sports and I used to dance. I have always been flexible and have a shorter right leg. I had surgery and that issue has been fixed but I've recently run into issues with my knee. It's become weak and dislocates at times it shouldn't. I've been talking to a physical therapist and I'm being out into a brace next week and getting an MRI to check for underlying damage. It is an unilateral thing but I'm able to function since it has been missing since I learned to walk. Instead of it being removed, my other muscles and ligaments had learned to take over and cope with it not being there. I feel I've run into issues because they weren't designed to take it's place and I think their time of replacing it is up and they can't do it any longer. The only thing I recommend is letting your children stay active. I know it bothers them and hurts but taking them out of sports doesn't help. The pain may stop but the issue remains. I've dealt with a lot of pain and dislocations but it's an issue that can be dealt with. I haven't had any major surgery for mine yet but I feel like I might in the near future. Hope this helps someone

[cincinoacl]

I realize I am VERY late to the party, but I recommend going to the Noyes Knee Institute in Cincinnati, OH. They help patients from all over the globe; when I was there, there were people from as far as Australia! He has his own PT office in the building, so you know that you are getting the best care by people who know and understand your condition. He constructed an ACL for me and it has been life changing! I know it's far, but there is no one better for this surgery. They usually request that patients who do this surgery stay in town and do your PT with them for at least two weeks, since those are the most critical for proper rehabilitation. He knows what he is doing, and I can't recommend this doctor enough.

[Emma_wilosn]

Hi Jeremy! I was also born without an acl, but only in my left knee. In addition, my left leg was shorter than my right leg, but they lengthened it so its no longer an issue (more or less) I'm glad to hear about other people with this issue! It is some what isolating having such an unusual condition. Have they tried any acl replacements on your knees? They've tried two in mine but neither have worked. My doctor is urging me to get a third one, but I'm not too up for all that rehab again. Besides, I've taken a lot of physical therapy and now I feel stronger, although my knee has begun cracking if I bend it. I'd love to hear some of your experience and advice!