arthrofibrosis and patellar infera at 27...what do I have to look forward to?

[kb7]

So I am beginning to wonder if I am on the path that many others have seemed to follow when it comes to arthrofibrosis and patellar infera/baja, that being one surgery after another until finally in a couple years a TNR is needed.  I just turned 27 and I am about as physically active as you can be, so the thought of needing a knee replacement in a few years is a death sentence to me.  But after spending countless hours researching my condition, reading article after article, and reading hundreds of posts on the site, I just don't see how this is going to have a good ending.  I had an acl and meniscus repair in March 09, LOA and manipulation in July 09, and now I have the fibrosis again along with patella infera (the patellar tendon is now half the length it originally was). 

The new OS I am now seeing is great and understands my condition very well, but they told me I have progressed so far that I will never have a normal knee again, which is very hard to accept.  It sounds like I have only a couple options left; 1- do nothing and live with the pain and be guaranteed arthritis of the patella; 2 - perform a tibial tubercle osteotomy to move the patellar tendon up which sounds extremely radical with only 'fair' outcomes; 3 - someone knows of a really cool, new procedure that I have not heard of yet and tells me about it....(wishful thinking).

Although this condition is rare, I have seen a few people on the site who seemed to have gone through something similar, but most of these posts are over 4 years old.  I'm hoping someone who experienced this in the past can offer some tips based on their experience. 

But like I said, I don't see how I will ever return to things such as skiing, running, and just being physically active, and if I can’t do that I don’t really have any motivation anymore.

Kyle

[missmyknee]

Hi Kyle

To quote the knee OS who was taking care of me at the time ."Patella baja and infrapatellar contracture syndrome is the worst condition for a patient to have and for an OS to treat."

I had patella baja/infera and IPCS from unrecognized severe Arthrofibrosis by my first OS, back in 2000 . My patella was pulled too low and deep in the joint space, I had very little patella mobility and my tendon was permanently shortened. I had flexion and extension deficits ,pain and also subluxations. You can read my story at this link :

http://www.kneeguru.co.uk/KNEEnotes/node/260

I am the one and only person on this website that had this particular TTT for this condition. It is called a DeLee osteotomy. Before this was done , the OS had to do a very extensive LOA  by first trying thru a scope, then going to an anterior interval release , then finally resorting to the Osteotomy because the patella tendon was completely adheised down to the tibia. The cut done to the tubercle was a deep wedge and cut completely off the tibia. This deep angled piece of bone is brought up proximally and placed where the patella is in good alignment again. The wedge cut of the bone helps bring the patella anteriorly / out of the joint space.  The piece of bone was fixed with one large screw and washer. I had to be NWB for 6-8 weeks because of the tension on the osteotomy. The place where the bone used to be was grafted with bone from the bone bank to strengthen the tibia and not leave a depression where the tubercle was cut.  I also had a Z-plasty to the lateral retinaculum for patella decompression and a chondroplasty to the patella cartilage.

I was in Patella infera for 18 mos before having the osteotomy.  During this time the cartilage behind the patella was severely damaged. The osteotomy accomplished what it was meant to do. It brought my patella back in correct alignment. I could bend and fully extend. I could do stairs although I had pain from the damaged patella. Even though I went on to develope Arthrofibrosis again and patella defect grew to be 15x11, the mechanics of the patella were restored. I tried synvisc and then had to have another LOA, fat pad removed and extensive chondroplasty. This was all done by a knee specialist in my hometown. He had reached his end and didn't know how to proceed further. By this time my PT had given me the name of Dr Noyes who is an AF expert and handles complex knee cases, which I was. The only salvageable thing he could do was a TKR. I had to have a TKR 3 yrs after the osteotomy.  My osteotomy was incorporated in my TKR with special cutting of the tibia, thus preserving the mechanical alignment of the patella.

Not one single time have I ever regretted having the osteotomy done.

Another TTT that has been used is a Maquet. The tubercle cut is a wedge but not all the way thru . The cut bone is pulled out from the tibia and a bone graft is put between the tubercle cut and the tibia. This brings the patella out anteriorly of the joint space but not proximally.

2 posters have had tendon lengthening procedures . One poster is skibum9 / Sharon.  She had her procedure done in 2007 ( I think) and went on to TKR this past March. Here is her thread

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=36830.0

Here is another thread from MelP who had the same procedure. She went on to enjoy hiking,and cross country skiing.

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=24680.0

I get kind of frustrated when people say it won't work so why bother. Having these procedures done restores patella mechanics, the damage is still there to the cartilage. At least functional mechanics are restored to the knee which helps with rehab and incase one can pursue cartilage restoration procedures.

Your success will have a lot to do with how long you have been in infera position, your Dr's knowledge of Arthrofibrosis patella infera and IPCS, your Dr's surgical technique , his post op protocals and the very important rehab program specific for Arthrofibrosis. and your patience and dedication to a slow, long, rehab that will have it's ups and it's downs. You also have your youth going for you. You might also consider getting a second opinion from Dr Noyes. Not all AF experts do the big surgeries for patella infera and IPCS that go beyond LOA or anterior interval release.

Remember, you need to at least have your knee mechanics restored in order to be active. It doesn't make sense to continue to grind out a patella left infera. My OS said the patella was scooping out the joint with each step ,left in baja/infera postion.

Hope this made sense and helps you out some.

Pam

[crankerchick]

You received some good information from Pam.

The only thing I want to add is the importance of seeing an expert. I would really consider getting expert opinions, even if that means traveling because like Pam said, it is a combination of technique, surgical skills, protocol, and rehab.

I don't have patella infera (in fact i'm the opposite and far more common patella alta) but I still feel like with what you are battling and what you are trying to accomplish, good opinions are a must.

[skibum9]

Kyle

Pam has provided some valuable information. The only thing I can add is to get a consultation from one of the AF experts and post surgery PT is the key to success.

I was diagnosed with patella baja within 5 months of my injury (patella fracture) by Dr. Noyes. My original OS had no clue as to what was happening with my knee. At the nine month mark, Dr. Noyes did a patella tendon lengthening procedure using my hamstring tendons from both the good and bad knee. We tried PT and scar tissue removal in the months between initial consult and the tendon lengthening surgery. Prior to the surgery I was in constant pain and my knee only bent to 85 degrees. It was quite a soul searching experience to make the decision to have the surgery. I have no regrets and the OS said my patella was resting on the tibia. But since my knee scars up every time some one looks at it, the damage just kept on happening. Then 18 months later I had to go through another agonizing decision for the TKR. After the TKR, the OS said my knee was a disaster. Again, no regrets, but not the solution I had hoped for. I have a little more ROM than I did 2 years ago, but still have just as much pain (like pulling super-glued skin apart with every movement).

In less than 3 years I went from "most athletic" to a couch potato. It wasn't for a lack of trying. I was dedicated to my rehab.

I really hope that you find a solution and you can be one of the ones that beats this thing. A knee that doesn't work stinks.

Sharon

[kb7]

I would like to say thank you for your responses, it really means a lot.
I do have a couple questions though...

Pam - Let's say you had the DeLee osteotomy procedure and somehow managed not to scar up again and didn't have the cartilage problems, do you think it is a surgery someone could have and return to physical activities such as skiing and/or running again?  I ask this because if I have this surgery and can find a way to get around scarring again I would like to know if it is something that you think would allow me to be active again.  I have only had patella infera for about 3 months now, so if I have the surgery soon enough I am hoping I won’t have much cartilage damage.

Sharon – Same question…If you didn’t have the scarring issue, do you think the patella tendon lengthening procedure you had would have allowed you to return to activities such as running, skiing, and other high impact sports?

I really appreciate your input, it means so much!!

My plan is to see a rheumatologist and get their advice.  I just finished a Medrol taper and it seemed to help a little, so I am thinking a DMARD such as methotrexate or if necessary a TNF inhibitor could REALLY help me.  After my last LOA my knee felt sooo good.  It wasn’t until the severe swelling and inflammation returned that I had the motion problems and pain.  I’m no expert on arthritis, or arthrofibrosis, but from the countless hours I have spent reading article after article, the only difference between a normal knee surgery and me is the excess inflammation.  If not for the inflammation, I would heal properly and with a full range of motion.  So why not try something like methotrexate or a TNF inhibitor after surgery to keep the inflammation down and allow my knee to heal like it is supposed too.  What do I have to lose (other than the fact that TNF inhibitors are ridiculously expensive). 

Anyways, that’s my plan, I guess we will see if it helps.

Once again, thank you for your suggestions, I truly appreciate them!

Kyle

[missmyknee]

Hi Kyle

If my Delee osteotomy was an uneventful recovery...no scarring again and no damaged cartilage, I am pretty positive I would have eventually returned to my active life. This consisted of doing equestrian sports ( hunter-jumper), golf, cycling, water skiing, bowling ( 170's avg) gardening, lawn cutting and chasing around my then young kids and walking the dogs. I never was a runner ( hated that) nor snow skier ( scared  my knee's to death), so can't advise on those activities . I don't think I would want to do contact sports or those involving cutting just because of the osteotomy site. The recovery from this surgery took 8 mos to a yr. It took a long time to regain quad and I never fully got it back. I started at only 15% quad.

My OS has always put me on Celebrex right out of surgery for anti-inflammatory plus the occassional medrol dose pak and cortisone shots. Ice has always been a great anti inflammatory so I spent a lot of time in my iceman. One thing to bear in mind with the really strong anti inflammatories you are talking about is the delay in healing these drugs cause. This can make a big difference where bone healing is needed, such as the osteotomy and even soft tissues. There would probably be a greater chance for infection due to the stronger meds. A lot of those drugs bring the immune system down,, great for no scar tissue but bad for infections. Methotrexate was a cancer drug my brother used for his battle with leukemia, so they are not to be taken lightly.

Pam

[Sophiepl]

Kyle,

I have had multiple surgeries to try and remove scar tissue and return my knee to being somewhat functional as the inflammation, heat, scarring and crankiness was/is really bad. A couple of my surgeries did not allow for the NSAID's because of the type of surgery and our hoping that cartilage could grow as NSAID's are a contradiction to the Aci procedure. My leg was never as hot and bothered as it was while trying to grow the cartilage cells, now after reading more about type II collagen cells, ACi and synovitis, this seems to make more sense to me why my knee was in overdrive. If I could now only get it to shut off.

When I ended up going for the TKR, the new surgeon knew of my history and we started on regular Aleve, 4 pills a day and then when that wasn't cutting it, switched to a prescription NSAID at the recommendation of the Rheumatologist. This helped tremendously...but my knee had a mind of its own and then we added low dose methotrexate. At the dose I am taking, the smallest, I don't think it is doing anything noticeable. The Rheumatologist and I have talked about other options as my synovium is just irritated and cranky, making even picking up my knee painful. I think Enbrel is considered a DMARD, but it has taken about 3 years of trying other things to get to this point and I am not quite sure I want to go there. There are some serious drugs out there that have a lot of side effects. I tried Medrol dose packs and cortisone shots and when I had several LOA's and debridements during the Aci phase, my surgeon used Sepra Film (adhesion barrier) in my knee to help keep the inflammation and scar tissue from developing too quickly. This did help at the beginning for mobility right afterward and my knee was not as angry. Just something to check on. Some other surgeons might have different opinions on the Sepra Film use.

Seeing a Rheumatologist has been good because they can check the CRP level and other things that show inflammation in the body and rule out things like RA, Lupus, Lyme etc. I definitely recommend seeing one even if it is just for a consult, they might have some great knowledge for you!

Good Luck!

Sophie

[skibum9]

Kyle

In a perfect world, if the knee hadn't scarred up and there was no cartilage damage, then yes I probably would have returned to an active life. Would it have included running and contact sports, probably not. I never enjoyed running and I figured out in my mid 30s that continued contact sports was probably not in my best interest. But downhill skiing was definitely a desire. I really just wanted to be active (hiking, golf, etc). As I have said before, I have no regrets having the surgery. I knew the situation wasn't going to improve without the surgery. Unfortunately, the universe conspired against me and I'm at the same point pain wise and activity wise that I was over 2 years ago.

Sharon

[chompy]

Hi Kyle,

Sorry to hear your story.  I've just logged on to the forum for the first time in ages and like you, I'm always searching for any new ideas that might have developed.  I've had several major procedures, including patella tendon lengthening which did help correct the patella's position, but did not address the re-growth of fibrotic tissue. 

My maximum ROM after warming up for an hour is 5-100 degrees, but that range is far from functional as there is still so much intra-articular scar tissue that I cannot walk without a limp or use stairs without great difficulty.  My OS will not repeat further procedures at this stage to remove this tissue as it will simply grow back.

I don't seem to experience excessive swelling or heat, but once the body has been provided the opportunity to start producing fibrotic tissue, it seems it wants to keep doing it.  For this reason,  I suspect a TKR may not be a solution in itself as it might not address the problem of fibrotic tissue re-growth.

I am not an expert on the pathogenesis of arthrofibrosis, but it seems to me that if secondary arthrofibrosis represents a change of bioligical function, perhaps surgery is only 1 part of a solution that may also require pharmaceutical intervention.  Rather than looking into anti-inflams, I'm trying to find any research on anti-growth drugs.  There are many cancer drugs that inhibit new tissue growth, and I'd really like to know if they would limit the re-growth of fibrotic tissue.  Is so, then perhaps they could be very useful after the surgical removal of intra-articular scar tissue for example.

Has anyone come across reasons this may or may not work?

[kb7]

Thanks guys for the information, it definitely helps to hear your opinions.  I'm not sure how my knee is going to turn out, but I will keep you updated.  As for right now, I'm just letting my knee cool down, trying to get the inflammation under control.  My PT is trying to lengthen my patellar tendon with a gradual stretch program where we place pressure on the tendon itself and try to work it up.  I'm not sure if it will work, but I don't really have anything to lose...

Well, thanks again!

Kyle

[kb7]

So...I am going to see Dr. Noyes next week.  I have requested copies of all my medical records/MRI's/x-rays/etc.  However, the closer the date comes, I'm starting to wonder what to expect.  I am flying almost 2000 miles to see Dr. Noyes and I want this to be a very productive meeting.  But what happens when I get there...the clinic requested that I bring the med records myself, so he will not have already read anything.  Is it going to be like any other orthopedic visit where he exams my knee, tells me what he can do, and then I'm back on my trip home?  I guess what I'm getting at is, could this be something that is totally done by sending him the records and having him look it all over, then decide if surgery is an option, then I do the visit?  (Probably too late now, already have the plane tickets and all!)

I know a lot of people on this site have seen Dr. Noyes and I just wanted some advice on what to expect, and maybe even some advice/tips on what I can do, such as things to remember to bring or questions to ask.  Any advice would be appreciated!

Thanks!

[crankerchick]

I travelled 1400 miles to see my doctor and the best advice i can offer is this: take a journal.

I wrote down every question I could think of to ask and I had an outline of all the things I wanted to address. I wrote the answer to each question or at least crossed it off when we discussed it. I wrote down every thing I could think of that I heard come out of his mouth. When he was dictating to his recording device, I was scribbling in short hand what he was saying. After wards, I wrote down a summary of the whole visit.

My biggest fear was not remembering to ask something, so that is why I took the list of questions. They just happened to be in a spiral notebook. But writing down the summary later proved helpful just because as time passes, I just can't remember everything, so it was good to have the notes from the appointment and the summary of the appointment and my feelings right after to look back on. Once I returned home and continued to correspond with the doctor, that is when I decided to make it a journal, so I could just have my whole experience and all the information being thrown at me in one place. I ultimately decided to have surgery with this doctor (this coming Tuesday), so I kept all of my correspondence with the doctor there along with all the tips I've picked up from other patients and people here on KG. It also has my to do list, contact list, packing list, and journal entries of my feelings.

It seems like it is helpful for me, even if it is only to give the control freak in me a feeling of order and organization. It's also a reasonably good distraction and a good reference piece.

[missmyknee]

Hi Kyle

When I first saw Dr Noyes, besides all my records, his clinical researcher told me to write up a summary of all my surgeries and history, in chronological order in short paragraph form. It is much better for the doctor to do a physical exam besides relying on mailed in records. One thing I have always found was Dr N is an excellent diagnostician and thorough physical exam. He has diagnosed some very complex problems with my knee that other OS's would have missed or totally stumped on what to do. This has been my experience with him since I've been going to him since 2004.

Make sure you let them know how far you traveled to get a consult with him. I've always told them that I've traveled 750 miles /10 hr drive to see him. The Fellow will come in first to do an exam and get a history . Dr N will come in after that. It can be very hectic on clinic days so make sure you get all your questions asked. You might make a list. You appointment can take several hours if it is one of those busy days. Dr N makes 2 trips, one late morning and one late afternoon, thru the PT room below his office, on those days. That can put things behind a bit.

Good luck on your appointment 

Pam

[kb7]

Thanks for the information!! Keeping a journal sounds like an excellent idea, and writing up a summary of my surgeries and history will probably help them out a ton as I have had a lot done over the past 8 months.

I'm excited to see what he has to say, but I'm a little nervous too, I just don't want to hear any more bad news than what I've already been told.  But I guess we shall see.

Thank you!

Kyle

[missmyknee]

Hi Kyle

Dr Noyes will be able to access how much patella infera you have. That will make a difference on the treatment, whether releasing and debriding scar tissue will be enough to cause the patella to go back up. Do you have quad weakness which can cause a patella to go into infera position. Sharon's procedure and mine are salvage procedures for patella infera. We had extensive patella cartilage damage to the patella caused by patella infera also Janet. All of us had to get a TKR because of the damaged patella.

Good luck , keep us posted 

Pam