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

[michelezip]

Help -
I'm a 52 y/o woman, that suffered a patella fx approximately 4 years ago.  After much pain, and mis-diagnosis I was diagnosed with Patella Infera with chondromalacia.  Prior to my fx patella I was an extremely active woman - very athletic, today I'm totally disabled and can barely walk with severe pain.  I have consulted with Dr. Noyes and Dr. Roger Larson at the UW School of Medicine in Seattle.  Both agree that I have a very severe case of Patella Infera, and have suggested a TTT (variation on depending on what they find when they open me up).  In addition, I have now developed a cartilage tear in my "good" knee with a resultant Baker's cyst which is rather large and giving me quite a bit of pain.  The only form of exercise that I am able to still do is Bikran Yoga (hot yoga), and that is even becoming very difficult. 

I wonder if there are any other's out there that have had patella infera for a such a long time, with chonodromalaica, and have had a successful surgical intervention.  I'm at the point that I want my active life back, and I don't know what to do.  I wonder if I should just argue for a total knee replacement, and avoid all the other potential problems from the TTT?  I know that the sooner you get treatment for patella infera the potential for a better outcome is likely.  That said, I'm going into year five with no additional treatment other than my first two surgeries to fix my fx patella and remove the hardware. 

Now that I have a problem in my other knee I'm really confused.  Just to let you know I'm married to a very bright physician, and he's not even sure what course of action I should take.  Anyone that has had a similar problem I would be very appreciative in hearing about the outcome of their surgeries.  In addition, any input on Dr. Noyes in Ohio, or Dr. Larson in Seattle, would be greatly appreciated, also.  I know that Dr. Noyes was anxious to see me, and felt that he could help me, as was Dr. Larson.  That said I'm wondering why I don't just get total knee replacement and end my horrible suffering.  At this point I can barely walk, I'm in constant pain, and it just seems to get worse day by day.  Thanks for any input it would be greatly appreciated.  Also, are there any "new" surgeries that I am unaware of that provide a "cure" for patella infera with chrondromalacia?  I may never ski again, but if I could walk without pain, enjoy some forms of exercise (ex. english hunter/jump seat), etc., I'd be very, very happy.  Would a total knee replacement allow me to resume an active life, or would I be "hobbled' by that forever, also.  Thanks again, for any information in regard to my issues.

[Janet]

Michele:

First of all, sorry you are going through all this. I have patella infera, but not an extreme case. I can't answer your exact question because I didn't have surgery to fix the infera. I won't go into all my long history, but will just say that I had four surgeries in four years, then ended up with a TKR three years later. Others will be able to answer you better (look at the posts by Pam--missmyknee), I think she DID have the TTT with Dr. Noyes before having a TKR. My only input is that a TKR by itself will NOT fix patella infera. You may need to have the TTT before considering further surgery. If Dr. Noyes didn't suggest a TKR at this point, it's probably not the first line of treatment. Remember, while a TKR is a wonderful surgery, it doesn't fix everything in your knee. My OS made adjustments in the TKR for my infrapatellar contracture, but didn't try to change the position of the patella itself. So while my TKR was successful, I still have some lingering discomfort in the soft tissues (especially the patella tendon)...because the TKR doesn't treat soft tissues.
 
I was 42 when I fell and ruptured my quad tendon; 49 when I had my TKR. I'm now 52 and feel like I'm finally healed and can get on with my life. I know how hard this all is.

Dr. Noyes is definitely a well-respected, top-notch surgeon. Have you read his tutorial about arthrofibrosis? You can learn SOOOO much in it. Find it on the Information Hub.

Good luck to you,
Janet

[kb7]

It's been awhile since I last posted here.  And the reason being that after everything I went through I just kind of gave up.  To sum things up, the last time I posted I was going to Cincinnati to have surgery.  I was dealing with patellar infera, sever arthrofibrosis, and consequently a massive loss in range of motion; I already had a couple surgeries to try and gain the motion back with no success.  Well, I had surgery in Cincinnati and it seemed to be helping until I ended up with a staph infection.  After spending almost a complete month in the hospital which included an additional five surgeries (making a total of EIGHT surgeries on the same knee) and was followed by IV antibiotics for 2 months and the use of crutches for almost 3 months straight I was and now am in worse shape than I began.  Awesome.

Just thought I would post some observations that I have noticed in the event I can help anyone else out.  My knee was always warm/hot and swollen and I'm sure that was part of the arthrofibrosis.  The infection made it even worse.  Anyways, I was placed on Remicade (infliximab) for a different condition about seven months after my last knee surgery.  Since then, amazingly my knee doesn't get warn/hot anymore and the swelling is controlled (unless I really push my knee in therapy, and even then it is minimal).  This makes sense considering infliximab basically knocks down the immune system, which definitely plays a part in the whole fibrosis situation.  I believe anyone who is suffering from severe arthrofibrosis should consider the use of a TNF-inhibitor like infliximab.  I have tolerated it perfectly too, not a single problem.  Just my two cents.

I plan on having surgery again (surgery #9)this winter to hopefully clean out some scar tissue and maybe even fix the patellar tendon to correct the patellar infera as my knee is just crap right now and I am too active to live like this.  I definitely don’t plan on flying across the country to Cincinnati again as I am not going through that again; it was hell.
Good luck to all those battling their own problems of the knee – don’t give up.

[bumkneeblonde]

KB!!!
Thank you sooooo much for the info about the Remicade! I think it might be EXACTLY what my doctor is going to try next.  He's been playing around with prednisone doses, and other than making my hair fall out (UGH!!!) I too have severe AF.  The redness/heat of my right knee is still so so bad.
So do you go and get it done at the hospital? Have you  had any side effects at all?
looking forward to hearing from you
Sarah

[kb7]

Sarah,

Regarding the Remicade, I get the infusions at a home infusion therapy company.  I know that hospitals have outpatient infusion services, so that is always an option.  Just make sure that you get things straight with your insurance company, I'm not sure if they will cover it if you only receive it for your arhrofibrosis as that is not an indication, but hopefully they will.  As for side effects, I have not experienced anything at all.  Other than it helping my conditions I cannot even tell I am on it.  Hope this helps.  Let me know if you have any other questions.

Good luck!

[bumkneeblonde]

Thank you! I just pm'ed you.

-sarah