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Author Topic: failure to diagnose AF after 8 months  (Read 9925 times)

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Offline JaneB

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failure to diagnose AF after 8 months
« on: June 13, 2007, 09:00:13 PM »
I'm wondering how many of you may have had a similar experience.  I had an ACL repair (which involved immobilization for 6 weeks post-op, as well as several weeks pre-op) three years ago.  Failed to regain ROM, tons of pain, and an OS who assured me that if only I "worked harder in PT" I'd regain motion.  Didn't happen, and thanks this board, figured it was AF and found a specialist.  I'm about 90% functional in the bad knee  now but damage was done (chondral lesion).

How common is this failure to diagnose?  SHouldn't an OS who is using immobilzation know that increases the chances of AF? 

JaneB
ACL repair 3/04
arthrofibrosis developed ROM 125/-10
LOA \anterior interval release/chondroplasty 12/04

Offline skibum9

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Re: failure to diagnose AF after 8 months
« Reply #1 on: June 13, 2007, 09:41:37 PM »
I had a rather similar situation. In an immobilizer brace for 5 weeks after a broken patella and then started PT at week 6. I didn't have a lot of ROM, but lots of pain, heat, and swelling as I started PT. Doc would say that I needed to work harder in PT and PT would say that I wasn't working hard enough or too hard. Talk about mixed signals. No one focused on quad strength once I could do a SLR on my own and PT kept trying to force the ROM. It took me 3 months to figure out that I had AF (thanks to this board), but by then the damage had been done to my patellar tendon. Following 2 debridement/LOA's (3.5 and 6 months post accident), the tendon is way too short with very limited functionality of the knee. The specialist could see the change in the patellar tendon within 2 months of the initial accident.

Lesson learned for me is to listen to your gut. If it seems like something is wrong, it probably is. If I ever have that feeling again, the will be a mental meltdown in the doctor's office to get their attention.

Sharon
11/06 - ORIF left patella
1/07 - wire removal with MUA
2/07 - LOA with MUA
3/07 - diagnosed with AF, patella baja
5/07 - scar tissue removal
7/07 - z-plasty patella tendon lengthening & reconstruction
1/08 - hardware/scar tissue removal
3/09 - scheduled for TKR

Offline missmyknee

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Re: failure to diagnose AF after 8 months
« Reply #2 on: June 13, 2007, 10:40:38 PM »
I had the same experience. Only I didn't even have a knee problem. I was immobilized ( cast and plaster splint) 5 1/2 weeks after breaking my tibia and fibula in 4 places. Part of the immobilization period included surgery to put an IM rod down in the tibia. This involved cutting thru my patella tendon. So Surgery thru tendon, prolonged immobilization, no PT for 7 weeks after and severe quad atrophy was the recipe for arthrofibrosis..... patella baja and IPCS. I had pain, swelling, heat, little flexion and extension, almost nil patella mobilization. I was not diagnosed for 12 mos, until I saw a knee specialist in my City. He diagnosed me with patella baja and infrapatellar contracture syndrome. He could feel the tendon changes and MRI confirmed. Xrays showed low patella. He knew what it was and corrected the knee mechanics 6 mos later, due to needing to build some quad for surgery and gain more bone density to hold a screw. Not only was my patella tendon shortened , but it was completely adheised down to the tibia and fat pad. I was left with 15 x11 leision on patella. Led to TKR 3 yrs after that repair. Didn't know about this forum til after my repair, but finally gained valuable info on this condition as I continue to have AF and many LOA.  No one had a clue what was happening to my knee, til I saw a knee specialist, including PTs I was working with at the time. The exercises I was doing were just making things worse. Unfortunately many OS's and PTs do not know anything about this particular condition. It's eye opening to the lack of knowledge. In the meantime, patients are left in an aftermath of damage, disability and loss of quality of life.

Pam
4Fx Clsd red
IMrod fib plate
derotate osteotmy tibfib
AF
IPCS patbaja
DeLeeOsteotmy,LOA,LR Zplasty,bongrf,chondrplty
chondrplty,LOA,fatpad remvd
TKR
openLOA,neurectmy,ITB Zplasty,fabela
PLC recon,revison,LOA,synovec
MCL,revison LOA
openLOA,prox Zplasty
openLOA, 6 neuromas excised,synov
3 Fusions

Offline JaneB

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Re: failure to diagnose AF after 8 months
« Reply #3 on: June 18, 2007, 05:57:42 PM »
Good  points, Pam.  I have wondered what, if anything to do about the lack of knowledge that ended up causing me pain and suffering for eight months, never mind all the expenses. I made many complaints of pain and lack of motion; never once did the OS measure my ROM or even observe my gait.  Very perfunctory
"follow up", to say the least.  Never ordered an MRI, Xray, etc.  Just kept telling me to work hard, which as you all know, causes further damage.

I would like to talk to him about it but he would swat me away  like a pesky fly.  Ideas?

JaneB
ACL repair 3/04
arthrofibrosis developed ROM 125/-10
LOA \anterior interval release/chondroplasty 12/04

Offline missmyknee

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Re: failure to diagnose AF after 8 months
« Reply #4 on: June 18, 2007, 10:41:10 PM »
Hi Jane

Like you , I made many complaints of my knee pain, lack of ROM, gait, etc, Especially, since I NEVER had a knee problem prior to the surgery. My ROM was never measured, gait never watched, only told to work harder at PT. Even when my patella started subluxing and locking because it was down low.....just told to work harder. I was doing aggressive PT and all the wrong exercises for this problem. The lack of knowledge on this problem, how it is caused, recognizing the symtoms early, is appauling in the medical community. You could tell you doctor and like you said, he would swat you away like a fly. Doctor's like that don't want a patient educating them. Who are you to tell them !!!

Fortunately, I now have a great OS for the last 3 yrs who knows all about this problem and I am in great hands.

Pam
4Fx Clsd red
IMrod fib plate
derotate osteotmy tibfib
AF
IPCS patbaja
DeLeeOsteotmy,LOA,LR Zplasty,bongrf,chondrplty
chondrplty,LOA,fatpad remvd
TKR
openLOA,neurectmy,ITB Zplasty,fabela
PLC recon,revison,LOA,synovec
MCL,revison LOA
openLOA,prox Zplasty
openLOA, 6 neuromas excised,synov
3 Fusions

Offline favouritesearcher

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Re: failure to diagnose AF after 8 months
« Reply #5 on: June 19, 2007, 09:44:13 AM »
Hi Jane,

Doesn't the hospital have someone you can tell the story to?  I made a complaint about my surgeon (who thought an MUA not earlier than 8 months post-op was the answer rom of 20-60) and after investigation, the outcome was okay, but not great.  I sent a collection of articles about arthrofibrosis, its causes and how it should be treated and the surgeon agreed that the best way was with an LOA and not an MUA.  I couldn't get him to agree about not being immobilised though, maybe because I had a fracture.  He's still not someone I'd recommend to you and he isn't someone I particularly want to talk to about it because he doesn't care anyway.

John
Mar 04 - Tibial spine avulsion fracture (skiing). Open surgery to fix, 1 screw.  Max passive ROM 20-75, active ROM 30-45
Aug 04 - Diag. severe arthro. Scar tissue clean up (LOA, removal of scar tissue).
Feb 05 - Discharged from surgeon's care. ROM 3-125.
Apr 05 - Discharged from physio. Same ROM

Offline JaneB

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Re: failure to diagnose AF after 8 months
« Reply #6 on: June 19, 2007, 02:40:52 PM »
The hospital owns the O.S.'s practice. Sort of like the fox guarding the henhouse.

JaneB
ACL repair 3/04
arthrofibrosis developed ROM 125/-10
LOA \anterior interval release/chondroplasty 12/04

Offline Janet

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Re: failure to diagnose AF after 8 months
« Reply #7 on: June 20, 2007, 12:13:33 AM »
Jane;

My problems started similarly, too. I tore my quad tendon which required an open surgery followed by immobilization. My quads did not respond quickly to PT and so I was immobilized for almost three months. So it wasn't any surprise that I developed a scar tissue problem and had to have a scope and MUA at 6 months post-op. The problem began after that. Over the next three months of PT, I was able to gain flexion to about 110-115. But I continued to complain about pain, altered gait, "catching" and the feeling that something wasn't right. Because I was gaining flexion, my OS kept telling me to be patient, that I had two surgeries in six months and it would take time.

By the time I finally ran out of patience and got a second opinion, the damage was done. My new OS diagnosed patella baja and infrapatellar contracture, my flexion was back to 90, my VMO wasn't firing at all. I have no idea if the patella baja came after the first or second surgery. Following another couple of months of PT with not much change except to get my flexion back to 110 or so, that OS decided to do a lateral release. She never said it out loud, but I know she thought the other OS had missed something or done something wrong. During the surgery, she found my knee to be completely full of scar tissue again, so it was cleaned out, the back of the patella was debrided, and the LR was performed. Well, the LR was successful in that my patella was no longer tilted, but all the other complaints continued even after another nine months of PT with a therapist who specialized in gait. That's when I lucked out and she suggested I see either Dr. Wojtys or Dr. Noyes, knowing they had done research in this area. She "had no idea what was going on, had never seen anything like it." She really thought it must be something I was doing wrong (until my PT set her straight). She never considered that the scar tissue may have returned.

My fourth surgery was with Dr. Wojtys, who removed a "huge ball" of scar tissue from around the patella tendon. He said there was no way to know if this was missed during the last surgery or had regrown, but that my former OS was an excellent surgeon. With the proper rehab protocol with "his" PTs, the scar tissue did not return, But the damage was done long before, and I ended up having a TKR three years later in November 2006. After the TKR, I had a MUA five weeks post-op due to scar tissue. Luckily, with special care by a pain management doctor and my OS, the scar tissue has been kept at bay and my TKR is going to have a good outcome.

When I first found KneeGuru, I was looking for information about a lateral release. I searched for "patella baja" and "ruptured quad tendon," but only found one old post. About that time, Heather M. started posting about all her research (I wonder where she is now and how she's doing??) and slowly more people came looking for info on arthrofibrosis. I wish I knew then what I know now! I'm not sure if it could have saved my knee at that point, but it's great that this forum and KneeGuru's main website has so many resources for people dealing with this devastating diagnosis.

Janet
Torn quad tendon repair & VMO advancement 4/99, MUA with LOA 10/99, Patella baja and arthrofibrosis, LR & medial release & LOA 5/01, LOA & chondroplasty 6/03,TKR on 11/06, MUA 12/06. From perfect knees to a TKR in 7 years, all from a fall on a wet floor...and early undiagnosed scar tissue.

Offline JaneB

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Re: failure to diagnose AF after 8 months
« Reply #8 on: June 20, 2007, 05:57:29 PM »
I, too, owe Heather M. a debt of gratitude for encouraging me to seek a specialist and not wait.  I was so confused about what was going on and was being told nothing was wrong.... this board literally saved my knee just  in the  nick of time.  But I am unresolved about the entire issue.

I read (via links here) original articles out of prominant journals (Am. J. Orthopaedics, J. of Sport Medicine).  AF has been discussed for years in these journals. That's how I made my OWN diagnosis of AF (was told I had RSD or something like it, but no testing). 

How can OSs be uninformed about what is a rather frequent complication, esp. of ligament surgery????

JaneB
« Last Edit: June 20, 2007, 08:41:20 PM by JaneB »
ACL repair 3/04
arthrofibrosis developed ROM 125/-10
LOA \anterior interval release/chondroplasty 12/04

Offline aliasgrace26

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Re: failure to diagnose AF after 8 months
« Reply #9 on: June 20, 2007, 07:39:07 PM »
I truly do not understand how OSs so frequently miss AF as a diagnosis!! It seems so obvious in certain circumstances, and yet it's rarely the first thing an OS would think of. Mine tried to diagnose me with RSD, too, which I clearly don't have (of course, I had to endure a spinal block to have the ruled out). I've now been thru Hyalgan injections, which have NOT helped, and have really only hurt me more, as I developed a very painful hematoma after one of the injections and the pain/bruising have yet to go away (after a month!). I still feel certain I have AF, and perhaps fat pad syndrome, too, but I really want my OS to recognize this when I return to see him in July!
Tibigal platea fx. 12/98
Subsequent poor medical care that did not detect fx. immediately
Rigorous PT once fx. was diagnosed
Arthroscopy in 11/99 to trim plica and remove scar tissue
Chronic pain for 5 years, then a reprieve for 3
Return of pain/stiffness 2/07, in pain mgt., awaiting answers

Offline JaneB

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Re: failure to diagnose AF after 8 months
« Reply #10 on: June 20, 2007, 09:51:18 PM »
I hope you are armed with all the current thinking on how to diagnose AF when you next meet with your OS. And expect to be taken seriously or move on to one of the experts, if you're not already there! 

Jane
ACL repair 3/04
arthrofibrosis developed ROM 125/-10
LOA \anterior interval release/chondroplasty 12/04

Offline aliasgrace26

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Re: failure to diagnose AF after 8 months
« Reply #11 on: June 20, 2007, 10:16:09 PM »
Thanks, Jane! Any advice on how to approach my OS so he doesn't think I'm 'taking over'??
Tibigal platea fx. 12/98
Subsequent poor medical care that did not detect fx. immediately
Rigorous PT once fx. was diagnosed
Arthroscopy in 11/99 to trim plica and remove scar tissue
Chronic pain for 5 years, then a reprieve for 3
Return of pain/stiffness 2/07, in pain mgt., awaiting answers

Offline Nick_Knack

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Re: failure to diagnose AF after 8 months
« Reply #12 on: June 21, 2007, 05:11:06 PM »
Is your surgeon using a protocol he found from the mid 70's for ACL repair?

Post op immobilization was "banned" from acl post op protocol since the early-mid 90's.  Get rid of this bozo and go see Dr. Shelbourne or someone of his standing www.aclmd.com to fix your knee.

Relatively speaking, 8 months w/ AF is not bad.  I lived for 17 years w/ this sh*t in my knee screwing me up and all sorts of crap surgeons telling me it was in my head.

So, I empathize and strongly recommend you dump your surgeon and seek out a real exert to correct this guy's incompetence. 

Don't feel bad: many surgeons suck.  How were you supposed to know better?  Well now you came here and now you know better.
Age: 35
1989 rt ACL (+25 degrees ext loss)
1994 rt ACL resection (+ 10 deg)
2001 rt ACL revision (+ 10 deg)
2003 rt med meniscus repair (+10 deg)
2004 rt LOA and post capsulotmy (zero degrees)
2005 rt LOA and tib bone plug removal (even w/ other leg)
2006 rt Fulkerson TTT & ACI Carticel

Offline JaneB

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Re: failure to diagnose AF after 8 months
« Reply #13 on: June 22, 2007, 05:05:19 PM »
Thanks, Nick; I've long since moved on to an AF specialist who's salvaged my knee as muich as possible.  That was thanks to this board.  I'm doing relatively well but haven't totally moved on beyond the first surgery.

Alias, I'm not sure what to advise re. the OS.  I think the bottom line is that you need to be listened to and heard respectfully; if that's not happening, move on!  I wasn't assertive enough (difficult to do when you're in pain and frightened) or I would have moved on sooner.  Remember that you are hiring this OS for his/her expertise; you're not there to please them.  If you are not taken seriously, or are met with arrogance or disrespect, find one who is capable of that.  From my experience the AF expert was low-key and unassuming and didn't have an agenda to prove.  Patients always deserve to be treated with consideration and I believe that an treatment should be an informed partnership. 

This experience has radically changed how I think about my own medical care.  I am a consumer who has choices and who needs to be actively involved in my medical decisions, not told what to do.  I will never again give away my power.  It's your knee and you know how you feel.



Jane
ACL repair 3/04
arthrofibrosis developed ROM 125/-10
LOA \anterior interval release/chondroplasty 12/04

Offline celinenj03

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Re: failure to diagnose AF after 8 months
« Reply #14 on: June 23, 2007, 08:37:32 PM »
If your OS isn't giving you the attention your knee deserves, go to another OS! Go to two other OS's if you have to. Eventually you will come across one who will order you an MRI and if they don't it is worth it so save up the money to pay for one out of pocket. Your knee is way to important to trust in the hands of a doctor who isn't responding and making you feel better even after one visit.

I find it so odd that where I live in NJ, arthrofibrosis is rarely heard of or talked about and I don't know any body in rehab that had it. It must be extremely RARE. A lot of the OS's here and PT's don't even recognize it as a diagnosis. For ACL reconstruction if you lose any ROM it isn't thought to be a scar tissue problem but rather a surgical error.

What I am saying is that if you went to any of the four docs. I saw for my knee, you probably wouldn't get an AF diagnosis from them either.

Unforuntately for those contemplating yet another sugery, it doesn't always solve the problem unfortunately and many times makes it worse. At least this is what I have read of too many cases on this board.

« Last Edit: June 23, 2007, 08:45:20 PM by celinenj03 »
Terrible Triad - 1/16/06 - Basketball
3/15/06 - Scope/Cleanout of to achieve full ROM
5/3/06 - Surgery-ACL Reconstruction-Allograft
9/12/07 - Large Loose body removed;Grade 4 Lesion on LFC
9/17/08-Microfracture, Lateral Release (all right knee)















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