Success with TTT or Derotation for Severe Miserable Malalignment?

[FormerlyActive]

Hello All - I'm new to this site so feel free to move this to Miserable Malalignment if there is such a section. Finally at 46 a name was given to what I thought was my uniquely messed up structure since childhood: knees face in, feet rotate out, feet are flat, and I'm bowlegged (bunions also). The many unhelpful knee doctors I have seen in my lifetime just shook their heads. With a lifetime of issues I have had surgery on each knee for medial synovial plica (which did not correct the legs structure but alleviated symptoms) in '82, then laternal release in '89, both knees. Although I understand this has fallen out of favor now (with some doctors actually repairing them now) the LR SAVED me. Until this year, when left knee feels exactly like 19 years ago pre-surgery: swelling, difficulty standing and walking some of the time, unable to exercise. I only just found out they do the LR just once in your lifetime. Puzzlingly for me, sometimes for short periods of time with no activity I feel ok.
Found one of the best patellafemoral docs here in Mpls and also had the gait analysis done at Gillette Childrens Hospital. They mentioned TTT and also the de-rotation, however they say derotation is not advised on adults. My doc does TTT but not de-rotation. I am waiting for a diagnosis, they haven't recommended anything definitive yet. Both of these surgeries appear to be very painful, time consuming and risk in terms of outcome. Of course I have a busy job that will probably go by the wayside if this occurs.
Wondering about outcomes for people with miserable malalignment - do they do derotation on adults, is it successful? Is it better to try for the knee procedures; medial imbrication or physical therapy, etc.? I'm sure they will have me do PT, despite all the promises that 80% of people with patellafemoral pain get better with PT, I never had anything good come of it pre-surgery; it never solved my issues. Of course its vital after surgery. Sorry for such a long post, appreciate any support.

[cat]

LOL, another fellow twistee! Welcome to the board. I too got my MM diagnosis in my "middle years". I had soft tissue work and a TTT done after being told this was usually done on teenagers. Like I'm a walking anomaly that I have made it this many years on these crazy legs.
Anyway, the TTT did not work for me. Perhaps it could have?? I don't know but my patella tendon got scarrred down and is somewhat shortened now and two PF specialists said that the TTT created too much load on the medial part of my knee and needed to be undone. I got a knee that pops painfully whenever I extend it now- something I didnt' have prior to the TTT surgery. So in hindsight, I sure wish I had gone the spin the leg route first.
It is rather uncommon for this procedure to be done on adults- (or so I was told yet again.) I was referred to Dr T in MI as he was considered the top expert in this area but antoher name mentioned was Paley. One uses internal fixation and the other external. I had my femur externally rotated and my TTT revised this past Oct. You can read my embarrassingly honest post op diary (say no to drugs) in the post op section. You can also check out Lyndsey's postings. She just had a derotation surgery this past May by the same wonderful Dr T. I expect she'll have much better results as she has virgin knees.
Let me know if you have any specific questions and do keep us posted on what you decide to do,
cat

[FormerlyActive]

A hearfelt thank you Cat. I'm grateful for this board and the ability to learn from the experiences of others. I read your documents and understood them as best as I could; it appears you have faced your challenges bravely. Since I used to like to be out and active, I only have dial-up internet, guess I'll have to update that and spend time catching up. I have many questions but will limit them for now to: Did you only have problems with one leg because that was the one with the rotation? Also it appears they did only femur rotation not tibia as well? When they did the TTT did they present the de-rotation as an option with TTT being the more conservative first approach? What is your alignment like now? More importantly how is your condition, can you walk, do normal things without pain? I can't imagine what you have gone through. Do you know is this surgery relatively new? It appears I should have had something like this done as a child or teen to correct my condition, I remember seeing doctors but they had no idea what to do.

[cat]

Did you only have problems with one leg because that was the one with the rotation? Also it appears they did only femur rotation not tibia as well?

I have problems with both knees. (My R knee is hurting as I type this.) Both femurs have an excess of internal rotation and an excess of external tibial rotation. But the torsion is mainly in the femur so that's why only the femur was derotated. My L knee is far worse than my R- possibly because of all the jumps and one legged squats done when ice skating.

did they present the de-rotation as an option with TTT being the more conservative first approach?

No. Derotational osteotomies are not commonly done on adults. I'm not sure if my OS (the one who did my TTT surgery) even knew about that kind of surgery and if he did, certainly doesn't do them and so didn't offer one. I should have gone to a PF expert sooner so that I could have heard all the options. Just didn't think I had anything so odd that required the expense and hassle of traveling out of area.

What is your alignment like now? More importantly how is your condition, can you walk, do normal things without pain?

My L knee now faces forwards. My R knee still faces medially. I still have pain while walking. Some of that is from the hardware (which I will eventually have removed) and some due to the problems incurred from having had the TTT surgery. That surgery caused my patella tendon to become thickened and tethered down. I also have a harsh clicking of my patella that I think is a result of having had the TTT and/or VMO advancement and medial reefing. I sure wish I had skipped the knee joint stuff and gone straight for the derotation. I think I would have seen better results.

I can't imagine what you have gone through.

It really hasn't been that bad- mostly very inconvenient- maybe a bit hard to accept that I'm not invincible. There are plenty of folks who have things far worse.

Do you know is this surgery relatively new? It appears I should have had something like this done as a child or teen to correct my condition, I remember seeing doctors but they had no idea what to do.

LOL, the OS's nurse told me several times I should have had this corrected when a child. My knees didn't hurt that badly then. They just got "tired".
I don't think that the surgery is new for children, just new for treatment of anterior knee pain in adults. I may be wrong. I do know that it is a highly specialized surgery. Make sure you see a top notch expert if you're considering it. Have you had a rotational CT study done?

Please dont' hesitate to ask questions. I am happy to share what I know. Somewhere I have teh name of a paper about TTTs and medial overload. And Dr T has good material to peruse too. I will share links with you later.

[FormerlyActive]

Cat - Thanks for all your info! Quick question; is the rotational CT study you mention the same as CT scan? Is it a special sequence of CT scans? I ask because my Doctor was debating between the CT scans and the gait analysis, and she chose the gait analysis because it is not "a point in time" and due to avoiding radiation (which I don't care about). I am thinking I should also ask for the CT scans because 1) Historically doctors didn't dignose me properly for 1 year before each of my surgeries and I want all the diagnostic info possible now in 2008. 2) I will need a second opinion no matter what this doctor recommends. i.e. if she recommends no surgery I will still seek 2nd opinon, if she recommends surgery I will seek 2nd opinion. I am sure the second doc will want all the info possible and probably would be more familiar with receiving the CT scan then the reports from gait analysis.

Therefore any info on what the rotational CT study is would be helpful. Did you have the gait analysis? (They do it in a hospital or lab and put the refractive lasters on certain points. It takes 4-8 weeks for results which is really long when you are hurting). Appreciate any info, A

[cat]

Yes, the study was a type of CT scan-

http://www.radiology.wisc.edu/divisions ... ersion.pdf

The Indy specialist I saw ordered one as he knew the MI PF specialist would want one. We jumped thru all kinds of hoops getting the scan set up in KS (my home state) and instructing the facility in how to do the procedure. They had never done one before. Turned out, the MI specialist, Dr T, preferred his own radiologist and wasnt' quite comfortable with using the KS CT. So I ended up having another study done.

I wouldn't discount the the avoidance of unnecessary radiation. David Brenner, lead author of a study reported in New England's Journal of Medicine says an ordinary CT scan delivers about the same average amount of radiation as the atomic bomb delivered to the Japanese survivors of Hiroshima and Nagasaki standing a mile or two from ground zero. So in a couple of years if I've grown a tail or third eye, we'll know why.

Didn't have a gait study done. That would have been cool. Have you gotten the results back yet?
cat

[cat]

Articular Cartilage Contact Pressure after Tibial Tuberosity Transfer: A Cadaveric Study

http://ajs.sagepub.com/cgi/content/abstract/29/4/403


Trochlear Contact Pressures After Anteromedialization of the Tibial Tubercle

http://ajs.sagepub.com/cgi/content/abstract/33/11/1710

Some bed time reading material.

[FormerlyActive]

Thank you Cat for your kindness. Education really helps; I'll have a read. I sincerely appreciate it more than I can say.

Re the Gait analysis it would have been interesting had I not been injured. It was at Gillette Children's hospital in Mpls which is actually a really impressive place where they help alot of really sick kids. There were kids all over the place on guerneys and with braces and in various states who were so darn adorable. I was very moved by it all, especially as my older sister used to work there. I was grateful to finally see it.

The gait analysis at Gillette is one of few in the country they told me. However they only see 1 adult per week, the rest are children primarily with cerebral palsy. I learned some things about cerebral palsy when I was there. It is 1 in 1000 per live births and often in premature babies.

The technology is the same used in the movies; Lord of the Rings, Beowulf, etc. where they then superimpose characters such as Gollum. They put small refractive patches on various rotation points on the body and then showed me on the computer, it looks like a stick figure who is moving. They also take over 100 lower body measurements. I don't know if they use a computer program in the end or not. It takes 8 weeks to get results so that is a long time if you are in pain and waiting for diagnosis. Also they told me over 5 times not to come in if I was limping as it would skew my gait but I told them I can't get an apt. with the doctor until I have this done and I already waited 4 weeks for this. I just iced and rested and tried not to limp. The results are interpreted by the PT and the Gillete Dr. However I found out the reason it seems I was sent there was as a possible candidate for the de-rotation surgery which the Dr. there does (I have miserable mal-alignment). They do this de-rotation on patients younger then 18 who have cerebral palsy. Its not really advised when you are older due to the bone healing issues.

It will not show unfortunately where my patella is rubbing that is causing me the pain, swelling and loss of mobility. The final results are sent to my OS and are a combination of written report, disk, etc. Part of my concern is the PT sees alot of severe cerebral palsy so for example when she had to enter the measure for Patella Alta (high kneecap) she said "no" however I do have that according to OS When I questioned her she said well I'm used to seeing patents whose kneecap is up on their thigh so my assessment is impacted. Everyone was really kind and I was really touched by how in tune they are with their mission.