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Offline J Chase

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multiple cyclops lesions
« on: September 12, 2017, 05:14:42 PM »
Hi everyone,
Here is the story of my knee problems

Part 1- The Injury

I tore my ACL in my left knee in September of 2014 playing high school football. I was 16 years old at the time. My initial injury took a while to diagnose. I was playing linebacker and felt a loud snap in my knee as I was trying to get through the offensive line. I felt my knee give out and buckle in. The athletic trainer performed the lachman test and reassured me my knee was fine, but I told him I could not run as my knee was unstable and kept giving way. He told me I would have to sit out if I really felt like I couldn't play. I went to a sports clinic the next day and they agreed my knee was stable. At this point it had swollen considerably, and they did mention the possibility of a slight meniscus tear. Over the next days, the swelling became considerably worse and I had essentially no range of motion at all for a while. I was on crutches for about a month, and was very careful not to put weight on my knee for fear of worsening a possible meniscus tear. Since the swelling still persisted after a month I finally got a referral to an orthopedic surgeon who ordered an MRI revealing a complete ACL rupture with no damage to any other ligaments or cartilage. I started going to physical therapy and surgery was scheduled for ACL repair in November.

Part 2- The ACL repair

I still did not quite have full extension by the date of my surgery, and my knee was still a little swollen. In addition, physical therapy was starting to become more and more painful the closer I got to the date of surgery, and I had a sharp pain during any exercises that involved weight bearing and knee extension. Nevertheless, I had the surgery, using a hamstring autograft. I was very shocked at the amount of pain I felt waking up from surgery, and surprised that the nerve block didn't seem to help at all. Anyway, I did not start any therapy until about a week after surgery

Part 3- Not getting better

The hardest part at first for me of physical therapy was regaining full extension, I suppose since I did not do much stretching the first week. I think it was after about six weeks that I finally got my range of motion back to zero. My physical therapist told me this was good enough even though I had five degrees hyper extension in my other knee, and that forcing hyper extension in my repaired knee would not be a good idea. Nevertheless, I would sit for 2 or 3 hours every day with my foot on a coffee table and weight on my thigh until I could not bear the pain any more, because I really hated the feeling of not having full extension. It took a while, but eventually my extension was about as good as my right leg. Therapy went good for about two months, but then one day I was doing a step down exercise when I felt a loud pop in my left knee. After that, my strength began to diminish more and more despite going to physical therapy every week. Any kind of exercise that involved knee extension involved considerable pain. The pain and weakness persisted, and after about 4 months post-op I began to feel a loud and painful popping every time I extended my knee. Every time I went back to see the doctor he told me not to worry about it and said it would get better in time. I remember after about 7 months post-op my knee was still getting more painful and my quadriceps were getting weaker when I went for another doctor's appointment. Again he said he didn't know why my knee was not recovering, but said not to worry about it because in a few months it would probably get better if I was patient. I asked about an MRI just to check if everything was okay and told him about how my knee had popped several months back, but he got angry and said that would be useless because he had already looked inside my knee and he knew that everything was okay. At that point I became really sad. I quit going to therapy because I knew it was only making my pain worse. I got an appointment with another doctor to get a second opinion on my knee.

Part 4- Cyclops number 1

After I explained my problems to the new doctor, he immediately said it was probably a cyclops lesion that was causing my knee to pop, and he ordered an MRI. The MRI came back positive for a cyclops lesion, and he scheduled surgery to remove it for me. After my second surgery (August 2015), he said one of my graft fibers had ruptured, in addition to the presence of a cyclops lesion. He said in about a month my knee should be good as new now that he had cleared everything out, and left the remaining 3 fibers of my ACL graft.

Part 5- More scarring

I felt pretty good for the first two weeks after my second surgery, and easily recovered full range of motion. However, excessive scar tissue started to form around my knee cap and it became painful to squat, as well as to sit still for extended periods of time, as it caused my knee to get really tight and resulted in restricted range of motion. My orthopedic surgeon recommended to continue physical therapy and said my problems were likely just a result of muscle weakness. I kept going to physical therapy for months but it did not help. I was prescribed NSAID's after several months, but that did not help either. Eventually, I had another surgery (June 2016) to remove excessive scar tissue around my kneecap and adhesions in the suprapatellar pouch and the medial and lateral gutters, in addition to a removal of what my orthopedic surgeon called a "partial cyclops lesion". This definitely helped quite a bit, although I could still feel something impinged in my joint. I though this was just some new scar tissue that had started to form.

Part 6- Second cyclops

After a few months, the impingement got worse, my knee scarred up more and I had persistent pain. Despite this, I decided to do what I wanted with my knee, since it seemed like my problems weren't going to go away no matter what I tried. I started running two miles every day,  and it caused considerable pain and crepitus in my knee, but I felt it was worth it. The feeling of impingement never went away, but I kept running nonetheless and decided not to go back to the doctor as more surgery would only cause more scarring in the future. About 7 months after my third surgery, I was jogging one day, and when I finished I could feel a new cyclops lesion in my knee. I knew it was a cyclops lesion because I had had one before, and could recognize that unmistakable thud every time I extended my knee. I went back to my orthopedic surgeon and he ordered an MRI to reveal I did indeed have another cyclops lesion. He scheduled surgery to remove it, but the insurance company did not approve. My doctor appealed, but they denied again. They recommended seeing another opinion on my cyclops lesion which I did, but they still denied it. I requested the notes explaining exactly why they denied it, and found out it was because I had not been doing physical therapy. I went to therapy for six weeks, and of course my knee did not improve since it was a cyclops lesion, and then the insurance approved the surgery.

Part 7- Where I am now

I am now almost 4 weeks out from my fourth surgery (August 2017). After the operation my orthopedic surgeon said I had another cyclops lesion removed, as well as some bone which was starting to form inside my knee. My doctor said if I had problems after this surgery, he might have to start over from scratch with a new graft. Within three days after surgery, I could still feel that feeling of impingement near my acl graft every time I extended my knee, and I realized it could not be scar tissue this time because it would take at least a couple weeks for more scar tissue to form. I went back for a post op appointment last week and asked my doctor if the feeling of impingement was being caused by my graft or if he even understood what I was saying. He said he could see where my graft was getting impinged on the intercondylar notch of my femur and for this reason he tried to clear out some more space and prevent it, as he had done after my second surgery. He said if the feeling of impingement persisted until the beginning of October to call him back and he would do a whole new graft. He said my graft was being impinged because my original orthopedic surgeon drilled the tibial tunnels for my graft too low, which is causing my graft to stretch out too far and grind against the intercondylar notch of my femur.

So now I am looking at a probable ACL revision surgery, and I am a little nervous because I know that the rates of success aren't as high as initial acl reconstruction. Moreover, I am almost 20 years old now, so my leg has gotten much weaker over the past three years do to my problems and I feel that rehabilitation could be extremely difficult and I may never get my full strength back at this point. I know its a lot of information, but I was wondering if anybody here has had any similar situations as far as a bad graft placement causing scarring and cyclops lesions. Either way, I believe I will proceed with the revision surgery, since not doing so will likely result in the continuation of this endless cyclops cycle. I would love to learn about others who have had problems with cyclops lesions and graft impingement.

Offline DogfacedGirl

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Re: multiple cyclops lesions
« Reply #1 on: September 14, 2017, 02:48:42 PM »
Hi Chase,
Gee whiz, yours is one of those stories that really gets my goat, so to speak. You should have been diagnosed and treated promptly and properly. I hear a lot from people that suffer so much becasue GPs and specialists make incorrect assumptions, then get all defensive when things go badly, and won't right their wrongs. I don't tar them all with the same brush, there are many good specialists out there too who really do put a lot of effort into what they do, you just have to find them.

Sorry, I don't know anything about cyclops lesions, but I would suggest that you research your OS as much as possible. This forum is probably a good place to ask about OS experienced in arthrofibrosis in your country. I also found some online review sites of medical specialists that I found helpful in that regard. Google your OS's name plus review and see what turns up, if you haven't already. Look for reviews that are a bit different to the usual standard procedures.

My thinking now, after many years of not getting proper treatment myself, is to try and find the right surgeon for my problem. It takes a lot of work, but because my problem (arthrofibrosis), and probably yours as well (a from of arthrofibrosis), isn't something that surgeons typically want to treat, it's a quite a specialized area.  Many OS will provide sub-optimal treatment because they aren't aware of the all the issues related to arthrofibrosis, such as the inflammatory side of it. So ring around as many OS that seem like they might have experience in this area, and ask what they can do for you and your particular problem. Then go and talk to some of them, if you can, see how they treat you (respect, good communication), if they look at MRIs (in my experience many won't, and I'm wary of those OS), and how they inspect and diagnose your knee. Also ask about their follow-up treatment and availability should things not go to plan post-op.

It would probably also help to see a rheumatologist or immune system specialist to help control that side of things, if you're able to do that with your insurance, or perhaps even if you can't. Are you in the US? You would certainly need to get your inflammation well under control before you considered more surgery. The fact that you had bone starting to form where it shouldn't be is a real concern. If you do need another op, the surgeon has to really know his/her stuff and probably will need to work together with a rheumatologist. Also, be aware that many surgeons want to do surgery, and may recommend it even when there's a high risk of an adverse outcome. So ask about risks, what they are, and what category you're in. Surgery sometimes makes things worse, so be careful what you ask for.

I would also suggest that you read as much as possible about arthrofibrosis and cyclops lesions. Try to read scientific papers because they aren't just opinion or selling something, and google any terms you don't understand. It's a lot of work, but you need to be in control, know what questions to ask, and what is going on.
All the best,
Kay

1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline J Chase

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Re: multiple cyclops lesions
« Reply #2 on: September 16, 2017, 08:51:18 PM »
Hi Kay,

Wow, thanks for replying. I was kind of in a hurry when I wrote that so I know my whole story was really unorganized. As far as arthofibrosis vs. cyclops lesions, I have done a little research concerning what causes both of them. Cyclops lesions are basically a localized form of arthofibrosis usually resulting from broken graft fibers or other issues with ACL repairs, whereas general arthofibrosis can either come from immobilization or an overactive immune response. In fact, I have very little inflammation in my knee right now even though I had surgery less than a month ago, so I'm pretty convinced that my particular type of arthofibrosis is quite different from a lot of the other people on this site, and is probably a direct result of poor surgical technique. I am in the US, and I don't think my insurance would cover a visit with a specialist.  I have had some recurring problems with adhesions, but not on the same level as a lot of people here. My scar tissue has been altering my gait, but I have pretty much always had full passive range of motion over the last couple years.

I know that my first cyclops lesion was probably a result of broken graft fibers, and now that my current OS explained the impingement I've been feeling in my knee I am thinking that all of the scarring has to be from improper graft placement. I am just curious as to whether someone has had a similar problem resulting from graft impingement before. So yes, I am fully aware that more surgery could cause more problems, and I know that is typically what happens with arthofibrosis, but I feel like in my particular case it probably would be better to get a new graft and suffer through the recovery process, rather than trying to find a treatment for my cyclops lesions. Cyclops lesions are usually a one-time thing, and my surgeon said I was the only person he's ever seen who has had two. I also think he was reluctant to consider replacing the graft when there was a chance at solving things in a less invasive manner. My current OS has done many ACL revision surgeries, so I think he has a pretty good understanding of the risks involved with the procedure. I am definitely going to ask a lot of questions before this surgery, though, because I know not to take a major surgery like this lightly.

Good luck with your arthofibrosis problems- I know too much scarring can be a major pain.

Offline DogfacedGirl

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Re: multiple cyclops lesions
« Reply #3 on: September 17, 2017, 01:10:53 AM »
Hi J,
I'm glad that you're happy with your surgeon, that's a good start! And you're obviously well informed. I'm still on the surgeon quest, I think a lot of what I said earlier was to remind myself of all the things I have to keep in mind. I'll be traveling to see another OS today, and I'm thinking I'll have more surgery too, despite the risks.

There is one other thing that has come up a lot on this forum - be kind to yourself post-op, listen to your knee and be careful not to push yourself too hard. Many people feel that they overdid it and ruined their knee surgery, myself included in the past. It is difficult to find the balance between working the knee enough to discourage adhesions and working it too much, but from what people have said, you should err on the side of caution when it comes to exercise. That has been good for me to know.

It would be good to hear how you go.
Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline Davidza

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Re: multiple cyclops lesions
« Reply #4 on: February 28, 2018, 12:44:58 PM »
Hi, Chase

How are you now ?

I think I have a quit similar Problem, I had ACL-Surgery in 2016 and cyclops removal in 2017 (exactly 1 year later). I feel now the crepitus coming back while Extension of the knee.

My doctor said the acl-plastic is to far behind, maybe the impingement is a result of that.

Thank for answer regards David



Offline Danielleb

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Re: multiple cyclops lesions
« Reply #5 on: March 12, 2018, 01:57:42 AM »
Oh my goodness! I am so sorry you are going through all this! I know Thompson a cyclops lesion causes! At about 12 weeks post ACL I was hearing thatí clunk during extension and Did my own research and was  convinced it was a cyclops. Went back to OS (I didnít mention cyclops thought) and he said scar tissue removal and MUA was necessary. In recovery too I asked if I had cyclops and he confirmed it. All my research clearly states a major factor of creation of cyclops lesion is SURGOEN ERROR. It sounds like after all your issues and now tunnels being off you will need a revision. You should not have to fesrntoyrninsurancenisny covering cyclops or any of it- as it clearly sounds like surgeon error. Maybe consider seeking legal counsell?good luck!

Offline The KNEEguru

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Re: multiple cyclops lesions
« Reply #6 on: March 12, 2018, 08:49:18 AM »
I am not sure that legal counsel will help you make a decision, J Chase.

Here is an article for you that exactly describes what you have experienced -
https://www.ncbi.nlm.nih.gov/pubmed/8526280

The issue is whether to revise the placement of the tunnels in the presence of the albeit low grade arthrofibrotic reaction you have had. This is clearly a difficult decision, and taking counsel from an experienced ACL surgeon is likely to be more helpful in resolving the problem of the recurrent cyclops lesions that taking legal counsel.
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Offline J Chase

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Re: multiple cyclops lesions
« Reply #7 on: April 27, 2018, 10:49:01 PM »
Hey, sorry I didn't reply to anyone and I kind of forgot about this site. I had ACL revision back in December, and initially the recovery went very well. I had no popping or stiffness, and recovered complete range of motion within a month. The pain was also nowhere near as bad as my first ACL repair, and I didn't even take anything for it after the first few days.

My knee was obviously quite weak, so I spent a lot of time in the gym and things seemed to be getting better. (I went to physical therapy for the first couple months, but have been rehabing mostly by myself since then.) Then around 6 weeks post-op, I started noticing some popping in my knee around full extension, which progressed a little, and then after about a week it felt about the same as before surgery. It's not the cyclops lesion feeling of popping at full extension, but it's a feeling I've had over the past few years that's never gone away except for the first several weeks after this last surgery. I just feel a grinding in my knee every time I lock into full extension and then bend my knee. It pops all the time while I'm standing, and if I don't twist my knee or bend it to pop while I'm standing it starts to feel really tight. It also bothers me a lot in the morning. Whenever I wake up I can't stretch my knee out without feeling it pop once I bend it again.

I asked my surgeon about it, and he seems to think it is a patella maltracking problem. I know that I do indeed have that, and I can often see my patella track out of place and feel it pop when I bend my knee. I think there is something else causing this problem however, because I can feel that the pop is coming from under the apex of my patella. I also noticed I have a lot of laxity since this last repair, and when I'm sitting down I can make my tibia translate forward quite a bit. I don't know how much of this is due to weakness, but I'm hoping it will go away. Sometimes when I stand for a while my knee starts to feel really tight, and that same popping sensation will occur, and I can actually see my tibia shift forward. So I feel like my tibia must be grinding against something. My meniscus is fine, so I don't think I would feel a pop like that against my femur, but It definitely feels like there is something solid my tibia is moving against. I don't know if maybe my knee is just scarred up so bad from having multiple surgeries and the extra movement in my tibia is causing friction against the scar tissue.

Also, I was shown an x-ray comparing the previous tunnels from the last surgery to the ones I have now, and now I am quite certain that was what was causing the cyclops lesions to form The angle of the previous tunnels is pretty much straight along the axis of the bone, whereas the new ones are in the correct anatomical position.

Like I said, I still have the same painful feeling of grinding along with some laxity now, but my quads are stronger than ever. I feel like if the grinding was a patellla problem it would have went away  by now, because I didn't have the sensation about a month post op, when I could barely do a single-leg press of 30 pounds, but now as part of my workout I do single leg-press on both sides with 165 pounds and 4 sets of 12, so I feel like quad weakness is not what's causing the issue. I also do a lot of single leg piston squats on the bosu ball, but I don't go past 90 degrees because then I get some anterior knee pain.  My left quad (on my bad leg) appears quite atrophied, but strength wise I can do just about as much as I can with my right. I also still have complete range of motion.

Sorry this whole post was rushed and unorganized, but right off the top of my head that's how my knee feels right now and thank y'all for your concerns.

best wishes

Offline The KNEEguru

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Re: multiple cyclops lesions
« Reply #8 on: April 28, 2018, 08:51:34 AM »
Hi J Chase
It could be an adhesion but also you could read up about plicae - http://www.kneeguru.co.uk/KNEEnotes/knee-dictionary/plica-syndrome
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