Waiting a year for realignment surgery

[joanfan123]

A few days ago my OS said he was very concerned with my alignment and said my legs probably have some internal rotation. He mentioned an LR, TTT, and de-rotational surgery, but said he wanted to wait a year to do anything. He wants to see if I will grow out of it.Some back round, I am 16 and have pretty much finished growing. I have had knee pain for over five years. I have had to MRIs(only on my left knee) and no CT scans. I had a scope in November to shave my fat pad in my left knee

Having knee surgery a year from now does not sound reasonable. I am going into my senior year, I don't want to struggle all year like I did this year. Having surgery a year from now would be horrible it would either mean crutches at graduation or I couldn't go on the gap year program I want to go on and I would start college on crutches. I can't even begin to fathom another year of pain.

The only things he said I can do now are my PT exercises and buy inserts for my shoes. I really trust my OS and would not want anyone else to do the surgery on my knees. At the same time though I don't understand why I have to wait so long, I have had knee pain for years it is not like the first time I have seem an OS. My dad agreed with the OS because he said there was only an 80% chance of success, and said even in a year he might not let me have surgery. He thinks I am rushing into it, but I have been in pain for years and it is just getting worse and I know what the recovery in like.

[kneepaincure]

Hey Joanfan,

Anything positive on the discussions with your parents yet?

You could try contacting user Lydnsey who recently had de-rotations done as well. She will likely have some useful advice for you.

Hope your pain levels have gone down a little.

[joanfan123]

The opposite of progress. My mom says I just need to ignore the pain until I 'grow out' of it, and there are no other options.

[RLE]

As crappy as it seems I'd wait a year or two. I know at 16 I wasn't done growing even though I thought I was. 16 is very young for this type of surgery. I know you're in a rush to get things straightened out but believe me, better to wait a year or two then make a mistake and end up with multiple serious surgeries.

[franny]

I have to agree with RLE I'm afraid. Even though you may not notice it you are still growing and developing at 16. Laxity and other knee related problems can be exacerbated by teenage hormone levels and I think that your surgeon is very sensible not to jump in and perform surgery on someone who is still developing.

I was a candidate for surgery on my wrists when I was younger (frequent dislocations) however we decided I should wait and see and with extensive physio and some growing I managed to avoid any surgery and now I'm a wizened old 28 year old I have far less problems with them than I did in my teens and they are liveable with.

We all understand on here how frustrating being in pain is and I for one can totally sympathise with you being a teenager with naughty knees however your surgeon is looking at your quality of life in the long run not just the here and now.

When I was younger I just tried to make myself think positively. When you have a good day - have fun! When your feeling rubbish get your friends round to sit in and watch a DVD. Know your limitations but try not to lead a limited life. I still live by this now as sadly my knee's did not correct themselves.
We all need a moan but I'm a firm believer in my Grandma's  mantra of positive thinking can lead to less pain.

I have just had some surgery and I thought that I had prepared myself for the recovery - I really hadn't, it is so much more difficult than I ever expected. I may have to have another procedure due to the knee being locked and this could affect my job and if affecting my ability to look after my daughter. I also have the pleasure of needing to have the same procedure on the right leg and hope to avoid a TTT all together.
Recovering from this surgery is far worse than recovering from any of the dislocations that I have had and I only decided to have it as it was the only option left open to me. If I could have avoided it I would have. I have had HMS since I was born and have had serious problems with it since I was 10. Other than an arthroscopy I have avoided surgery, through choice, until the age of 27 (very nearly 28).
I really hope you get to avoid it all together.

Have you thought of having any counselling? You sound as though your situation is distressing to you and depression isn't uncommon when you are dealing with chronic pain. I'm sure many others on this site, including myself, have experienced this horrible side effect of knee problems.

Take care of yourself.

F
X
I really hope you get to avoid it

[KinnaMarie]

I totally understand what you are going through and I know it sucks.  I am a couple years older than you and was in a similar situation about a year ago.  I've had knee troubles since I was in middle school but always just ignored it.  But then I ended up getting hurt playing volleyball and had to have surgery to remove a piece of bone that chipped off when I dislocated my knee.  After that I was sent to PT because my OS at the time said my knee cap isn't in the right place and I need to work on strength to help realign my leg.  Well that didn't work and I was sent to a new OS.  He suggested a TTT, LR, and ligament work but suggested I stay in PT longer.  I was in college and close to finishing, so I just wanted the surgery done and over with because I was getting nowhere in PT and my knee wouldn't bend past 40 degrees, plus I wanted to get on with my life.  After crying leaving PT one day I went to my OS office and said I just want this done with.  He hesitantly agreed, but made me see his teacher from med school first. I did and he called me later and said he will see me in a couple days for the surgery.  Since that surgery i've then had 2 more because of problems that occurred. 

I agree with what others have said on here... and I know that is not what you want to hear.  But it truly is best to wait and not rush into anything like I did.  Really make sure this is the right surgery for you.  If you truly trust your OS like I trust mine, then listen to them and wait.  I am so sorry for what you are going through, but just try your best in PT and try to keep your mind off your knee.  I also get your struggle with your parents.  I wish I had advice for you on that one, but mine still drive me crazy sometimes!

Best of luck to you and let me know what you decide.   

[crankerchick]

I will bring an opposite perspective to this conversation. My doctor likes to point out that orthopedics in its literal translation is "straight child." Boney malalignments make their way into adulthood because they don't get corrected when the person is younger. Some people are unfortunate enough to get a minimally invasive or "let's try this" procedure along the way, setting them up for the surgery trail of tears. Some find a surgeron with a clue even later, who then has to fix the original problem and all the collateral damage from the previous surgeries. Some of those with boney malalignments never require surgery, or get lucky and find acceptable relief with the first "wrong" surgeries. Some just live with it.

There are examples from all of the categories of the spectrum.

That said, there are experts out there who perform these surgeries on children much younger than 16 with excellent results. Some of these experts write the books on these topics.

I'm not saying have surgery--waiting and exhausting conservative treatment is always a good idea. Surgeries that don't address the root problems, however, are never a good idea, neither now nor later.

The important thing is to make sure the entire leg is being analyzed, which it sounds like it possibly has been, and then make the surgical decisions from there. The appropriate surgery for the situation is what matters the most. Age should play a role right along with quality of life. Crooked bones don't get straight, though, without surgery. You don't grow out of crooked bones I don't think, but perhaps the symptoms can improve with time, and that is what matters most.

In my case, while my pain got "better" with age (really my activity level just went down), my instability got worse with age. I am thankful though, that I didn't have surgery when was younger, though, because I did have a bone malalignment and nobody was picking up on that when I was younger.

[joanfan123]

Thank you everyone for your input. Since there are a lot of replies and I don't have a ton of time I am going to try to answer everyone at once.

My OS did say that I would not grow out of it, he said my pain might get better with time. He also said he thought I was done growing. Also I have been attempting to do research online and it seems as of the majority of time de-rotational oseotomies are performed on children, and it was very hard to find anything of teens/adults outside of this site.

If he was just looking to perform a TTT and LR I think it would be different, as that is where most people on this board have issues, when the whole picture is not taken into account. The issue is not weather or not it is the right surgery for me, it definable is. Most of the people of this board who have had this surgery were happy with results and didn't need anymore surgeries. Since the issues is in the bones I do not see how a chiropractor can help.

If I don't Have this surgery I think I will probably also need some cartilage repaired, as I am starting to get cartilage damage from the mal-tracking issues. I much rather just treat the root cause. 

People have told me that no one every regrets waiting for a surgery, but I don't think it is true. I know personally that I wish I would have had my fat pad trimmed about two years earlier, it would have made a huge difference in the recovery. I just think you hear about people who have had bad surgeries more than you hear about people who had successful ones that they wish they had sooner.


I have tried all my other options. Since posting my pain in both my knees has gotten much worse and I have started to get pain in my left hip, making just sitting painful. I really don't think I can to another year of it. If I wait, I will probably have to quit my after school job, quit my independent study in child development, change my senior internship, and give up the year abroad I was planning to take with my friends. I know I will have to take time off from some of these things for surgery but it would be worth it.

[crankerchick]

My OS did say that I would not grow out of it, he said my pain might get better with time. He also said he thought I was done growing. Also I have been attempting to do research online and it seems as of the majority of time de-rotational oseotomies are performed on children, and it was very hard to find anything of teens/adults outside of this site.

It is hard to find literature on this topic on the general web. Most definitely, the first few hits are on performing this surgery on children, notably those with CP. That said, it absolutely is performed on adults and teens and there is plenty of literature in medical journals on the topic. I would be happy to point you in the direction of it. Click my user name and send me an email and I can help you with it.

It is always hard to say whether a person regrets something or not. Many times, people approach "regret" as saying "If I had done __ then ___" but they forget that changing one thing doesn't mean everything else would play out the same with just the positive effect of changing that one thing. I hope that makes sense.

I certainly regret being 28 before someone would take the time to diagnose my problems properly. I lived in the doctor's office and ER as a kid. I had pain starting when I was 9 that I dealt with daily. I was an athletic kid and teen and that just made things worse. Eventually I didn't play sports at all because it was just easier to deal with the pain if I didn't aggravate it with impact sports. I could worry less about instability if I made sure to walk in a straight line, waddle when I turned around, and avoid activities where I couldn't think about my knee and play at the same time. The doctors I saw always just said I had a mobile patella and I should just keep my quads strong, wear a brace, and live with it. My legs didn't look too "wonky" and we just took the doctors at face value.

I certainly regret not pressing the issue then, to find a real diagnosis. I definitely am not happy that I lived with it for so long. Maybe I could have had a different teenage and college experience if things had gone differently.

Or maybe we would have pressed the issue then and had a wrong surgery. Or maybe we would have had the right surgery with the wrong doctor. Or maybe I would have had the right surgery with the right doctor and had a complications that truly wrecked my teenage and college years. Or maybe my aunt has balls and she's really my uncle. Maybe...

See where I'm going?

The reality as I see it, and I think you are saying the same, is that people really don't know *what* is going to happen but you just have to gather all of the facts and make an educated decision.

As a minor, your parents have the final say and they are only doing what they think is best. Perhaps with more research you will be able to present them with some medical advice on if it really makes sense to wait.

What are your angles of rotation?

[allyd]

To add my perspective on Cranker’s last post… There are absolutely a lot of what if’s in everyone’s life. I’d simply suggest don’t make decisions based on your short term plans… You are very young, and opportunities will always come. At your age everything seems like it is going to make or break your life, and it’s not going to. It will simply afford a different life experience than what you planned. This happens all the time for many different reasons. And the results are not always negative.

Regret whether it comes from a positive or negative experience is always based on hindsight. There is always the possibility, this surgery isn’t a success (or that recovery isn’t as quick and easy as you’d like), and you miss out on all your plans anyways. Will you regret having the surgery and pushing for it then? I suspect this is the fear your parents have.

Regardless of Success rates, the surgery you are looking into is a big surgery and shouldn’t be taken lightly. I know many will disagree with me on this comment, but major procedures are often thrown around as options on this board like candy. I’m definitely not saying try something ‘easier’ – as I’m a supporter of choosing the RIGHT procedure. I’m simply saying look at the situation with a broader perspective of why everyone involved (OS, parents) is asking you to wait.