I posted in another thread about my doctor being upset with me having had excessive scarring. I have had 1 MUA, 1 Lysis of Adhesioins with MUA, and (what started it all) a mirofracture and cartilage removal surgery for a torn piece. He told me after this last time that he can't keep doing mua's on me and that this is getting ridiculous. He was a great doctor but I can tell he is frustrated and doesn't know much about arthrofibrosis and hasn't officially diagnosed me with it (my mother also has it to the point she has decided to live with the tumors growing on her body and spine to prevent further damage from AF after surgery...she lost movement and function of her shoulder the first time) Now the therapist I have is an in home one and she told me today that there is something going on IN the joint. She can feel it....though my ligaments are fine and feel great. The doctor thought it was lack of muscle tone but she says my muscles are fine (and isn't worried about toning them at all) I personally still feel a deep throbbing pain inside the joint on the medial side and she feels exactly the same spot. She can't say what it is but thinks the doctor should go do another scope or LOA ... something. The doctor basically says there is nothing wrong and that it is my pain tolerence  but I FEEL my knee cap catching on something just above and to the inside of the incision. It feels as though it is growingu nder neath the kneecap because it is gradually getting worse and you can feel that same thing fromt he outside of the body.

now the hard part is that I am at 90* when the therapist pushes my knee to the point I am crying from the deep joint pain. The doctor doesn't want to do anymore surgeries to clean it out and wants to instead do a femoral nerve block at home for about 2 weeks or so (through an I.V) and get me to push past (word for word) the crunching sounds and get it moving again. I seem to do great right after the first few surgeries but then the degrees go down and i am 2 steps back from what I was prior.

My shocking news that the therapist and nurse both said is that if I don't get this knee back, that I will most likely need a TKR and I am only 25 years old! I don't see why they would do that if my knee itself is good and the ligaments are good....but I don't know what is going on? I just needed to bounce some thoughts off of all you wonderful people in the same AF boat as me That won't cure or help AF so what should I do?? They have literally told me there is nothing and no treatment for af at all otu there and I am so lost!

I responded and am just waiting for the information on her therapist to find out where to go for the therapy as of now. . .and I am also begging my husband for him to get his car fixed this weekend so tha the is able to use it for work and that way I can line up childcare for my 4 little ones and go to Dr. Eakin since he is very far and I will need a hotel for the night. I am also doing something smart for once and am getting my medical records from my doctor that has been treating me this monday and am going to cut all ties with him after that.  I totally agree, I even told the therapist about the possibility of having AF and she didn't sound like she knew much to do so that alarmed me even more. I am finally taking the great advice given to me (instead of being ignorant and sitting back letting them do whatever haha) and will no logner let him practice on me and instead will be heading to a new doc. I just wish that there was one a little closer since I will only be able to go a few times with the cost of gas being so high out here and my children having no one else to take care of them during the days besides me :/ Is there a way that I can see if there is one a little closer to my area online? Then again, if I do find one, i rather make it worth it and go with the best of the best with the doctor referred to me by all of you.  This all is just so shoking and scary to me with everything that is going on!

Hi Babycake

I'm glad you are taking steps to see Dr Eakin. The unfortunate thing about AF is that there are very few Drs who have made the effort, thru research and experience, to gain knowledge about AF. They have devised protocols using special surgical techniques, post-op protocols and rehab techniques. Plus they have seen many cases of AF and successfully treated these patients. That is why these Drs are so rare and spread out thru the U.S. and even more scarce outside of the U.S.

You can start by opening a dialogue with Dr Eakin, by emailing him or calling his office. Before I saw Dr Noyes, I was emailing his director of clinical research and his medical sec/nurse. Here is his website and contact info. They should be able to tell you what you need. You can also message cbrmedic about this since he is the most recent patient to see Dr Eakin.

http://www.pamf.org/sports/staff/eakin.html

Pam

Babycake,

Anyone who says a TKR will fix AF is a liar!  Please tell them I said so!  I have the failed TKR parts on my desk to prove it.  My three OS could not spell AF between them...kept saying I was infected...despite every culture coming back negative.

If you don't get the AF under control, cutting it out or cutting out your knee joint will not stop it.  AF is like a mother in law...the more you ignore it the more it visits.

Dr. Eakin, Dr. Noyes, Dr. Woltjy, It is worth the flight and money.  I wasted three years on three no talent non working OS that all end up saying..."Sorry...but I am not sure what more I can do for you!"

The truth is all they are saying is "Sorry...not much more I can do to you!"

Go to a specialist...sooner, not later. 

Russ