Hi,

I'm new to this board and I'm posting here hoping to find some more information (I also have a post in the "General Knee Questions" section). To make a long story short, for the past 3 years I have slowly been giving up all of the activities I love, skiing, dancing, tennis, because of persistent left knee pain. I am a Sophomore in college, so I'm not really at a point in my life where I want to give up things I enjoy doing. Simple tasks such as climbing the stairs, taking a walk, and standing cause a great deal of pain as well.

As for treatments I have tried just about everything, you name it I've more than likely done it. When I received Prolotherapy the doctor I saw mentioned Ehlors-Danlos Syndrome. He only mentioned it once and that was it, so with the little research I did I wasn't too concerned. Every joint I have is hypermobile but the only one that persistently gives me a great deal of pain is my left knee. On occasion my right knee with hurt too, but I'm sure it's due to the fact that I compensate for the left one.

The problem with my left knee is that it subluxes medially (towards the inside of my body) and I have not had any surgeries. The doctor I have now tells me that my medial ligaments are lax, which is why I have medial subluxation. Previous doctors have suggested surgeries such as a lateral release, TTT, Fulkerson Osteotomy, etc. But all of these have the potential to make the problem worse. Is there not a way to fix the medial side? My doctor tells me that there really isn't anything to do that can fix my problem.

I'd like some ideas to go in with the next time I see my doctor. Or, if maybe I should switch doctors? My doctor is a great guy and is genuinely concerned with fixing my knee for me. I really appreciate that he doesn't strongly recommend these procedures because there is that risk of making it so much worse, whereas other doctors have dismissed the idea of medial subluxation.

Thanks for any help/advice!

Don't dismiss Ehlers Danlos Syndrome. It is a very serious condition ! Bony operations tend to work on us much better.

I would definitely see a Geneticist before considering any surgery !

You really need a patellofemoral specialist. Regarding the TTT, there really should be a reason for it. I had 2 fulkersons done that ended up needing to be reversed since they weren't right for me. Actually I think the ligament reconstructions I had are much more painful than TTTs.
There are several things that could be causing your instability. One being lax ligaments. It could also be trochlear dysplasia. Have you ever had a X-ray done with a sunrise view of the patella and groove? You could need a TTT or you might have a rotational deformity with your femur or tibia. You don't want to rush into any surgery without getting real answers. I don't think your current surgeon is quite good enough.

I think physical therapy can help to strengthen your muscles which can make joints more stable. High impact activities are no good. Things like swimming, yoga, or Pilates can be helpful. I like using resistance bands. Sometimes I'll take ibuprofen too.

It's definitely a good thing that you're getting more opinions. Your problems could be caused by patella alta. Hopefully the new doctors will do some more imaging.

Obviously physical therapy is something to try before surgery. Sometimes surgery is just necessary. But it's a good idea to go into surgery with strong muscles.

I have an appointment this coming Tuesday with a new specialist... he's been practicing for many years and does have special interests in fixing knees. Although he does not have great reviews for bedside manner or being a warm and fuzzy guy, I think I may just have to get over it if I want something done the right way.

As for my other surgeon, it's very possible he isn't experienced enough. I would say that in the medical field he would be considered relatively "young" for a doctor so that may be the reason for why he may not know what to do.

Thanks again!

You mentioned Prolo

"As for treatments I have tried just about everything, you name it I've more than likely done it. When I received Prolotherapy the doctor I saw mentioned Ehlors-Danlos Syndrome. He only mentioned it once and that was it, so with the little research I did I wasn't too concerned."

Do you feel prolo help you?  How many treatments did you receive, duration, number of injections, proliferant etc.  I am trying it for my back now, but may do it on my knees as well.

As for me I have a mild case of EDS, both of my knees have had lateral releases done one in 98 with a medial tighten procedure successful. One isolated LR in 2006 no change possibly a bit better.  Where do you live?  There are a few doctors around that deal with this as part of there practice.  I feel a TTT probably would have worked better for me, no LR or a cut and repair after correction of tracking combined with a TTT. 

Good luck choose the right doctor even if you have to travel this problem is handled only be a few correctly.

Silkncardcrafts - My appointment went the same as it usually goes when I see a "highly respected" doctor. As normal, this doctor told me that Medial subluxation/instability is not an accurate diagnosis of my problem (please be aware, he never told me what exactly my 'problem' was) and he doesn't understand how another doctor could believe in such a problem. His facts for explaining this, "people have knocked knees or their patella sits extremely to the lateral side". How it's possible for one doctor to see medial subluxation and bowed legs, and for the next doctor to firmly believe the complete opposite is beyond my imagination. This doctor brought up EDS without my even mentioning it, he said he didn't think I was a candidate for that or Marfans (Is that right?). He acknowledged that I have pain but told me to learn to live with it and continue to do my activities. I'm aware that a general knee surgeon is different from a patella specialist and I do realize there is a consequence of having surgery with EDS... I'm not at a point where any surgery has been offered to consider that I want to take up. I think I deserve a bit or credit for the work that I have already done. I think I've shown that I know enough from research, differing opinions, and my own common sense to not rush into anything. It's not my intention to be defensive, but I don't think you realize that I'm not going to risk everything and have a surgery just to see what happens. In a previous post I did mention having a lateral release done, knowing that it causes medial instability (which can be fixed), and have my surgeon correct my problem that way, by making it worse, first. I am fully aware that is an unethical and inappropriate solution to my problem. I was simply trying to expand on why fixing medial instability isn't possible by itself, but after a lateral release it is.

Lizzylegz - Good luck to you with your operation and recovery! Unfortunately, I can't help you out. I have yet to find a doctor to help me. It is either, I have a doctor to recognizes there is a problem but doesn't know how to fix it/doesn't want to make it worse, OR, I see a doctor who totally dismisses my pain and says that my problems are invalid. So congrats that you found someone to help you out!

Fire535 - Hopefully, I can be of some help to you. I had my Prolotherapy treatments done by Dr. Shiple in Springfield, PA. If you're within that location and would like some more specific information about him and his office feel free to ask! Also, if you live within' the US you can visit the Journal of  Prolotherapy website and find doctors in your area that are certified to preform Prolotherapy.

Prolo helped me at first. For me it took about 4-5 treatments (about 3-6 weeks apart) to really feel a decrease in pain, and it's typical for it to take a while. So you make feel great right away or it may take a little longer like it did for me. The type of injections I had for my knee were superficial, so right under the skin, and I believe he used dextrose. As for pain, it really depends. For me, I don't have a problem with needles so I was able to relax. Generally it was pain free, every so often when he would reach my Saphenous Nerve/Bursa area it would be sensitive but nothing major. Also, when the pain is really localized there may be a series of injections close together, so you may feel some uncomfortable pressure from that, but nothing serious! The number of injection I had were based on the pain. It ranged anywhere from 20-50 injections (It doesn't take long do to either). Also keep in mind that the number will be affected by the size of your pain area. Prolo worked really well for about 8 treatments and then I was put on an "as needed" visitation, and released to do as I please.

Then, as I was running in gym class, I felt a pop and went down, there was a lot of pain in my Saphenous Nerve/Bursa area. So my doctor did about 4 more treatments and when they didn't work he used an Ultrasound to do deeper injections (basically a step below PRP, depth wise). I had two of the deeper injections and they did not work either. So with that, my doctor advised me that if the deeper injections weren't working PRP would not be a wise choice and a greater waste (for lack of a better word) of money (Prolo is not covered by insurance in my region). I discontinued seeing him and went on the hunt for more opinions on how to fix my knee.

Just a warning, make sure when you get Prolo done you ask what type of injections you are getting (superficial and deeper). I say this because with the superficial injections I had no pain the next day, maybe some tenderness around the injection site but nothing to inhibit me from my daily activities. However, the deeper injections caused me a whole lot of pain, that I was unaware of. The next morning, I was so dumbfounded by the amount of pain my whole leg was in that it took me 10 minutes to figure out how to get out of my bed, and that is no exaggeration. From that it took about 3 days to wear off. So just be cautious and ask, because you may want to plan ahead if your doctor thinks you will experience this type of pain.

Sorry for all of the long explanations, just trying to give you all of the information I think would be helpful! Please ask if you have any other concerns!!