Advice needed on LOA/AIR after Vail visit.....

[willp]

Hi everyone,

Suddenly, I find myself posting in the arthrofibrosis board. Wow....what a difference an unscrupulous surgeon can make! This will be a long entry, but it's a way to introduce myself to the board, and hopefully give people enough info about me that anyone who wants to can answer my questions knowing what's going on in my knees.

My basic background is that I was a runner/triathlete/skier who overtrained for a marathon in 2004 (I'm 38 now). I had knee pain in both legs (though worse in my right) for a long time afterwards - in retrospect, it was nothing serious, though it would often flare up spontaneously or as a result of exercise. It worried me. I took an MRI for a second opinion to an OS who persuaded me that the only way to be truly sure of what was going on was to 'go in and take a look'. I asked if there'd be any side effects, and what the long term consequences would be, and was assured that there'd be none. It was a risk free procedure. I'd be on my feet again the day after and running in 6-8 weeks. How utterly naive was I in the face of a good bedside manner?!!?

I had the op on my right knee in April 2006. He removed my plica and gave me a partial menisectomy. Post op, my pain increased immediately, and was constantly with me. I wasn't referred to any form of PT - because I was 'active' my surgeon said that I could do my own exercises. When I went back to complain of increased pain and symptoms like locking, heat and stiffness my surgeon's response was a continual 'strengthen your quads'. He'd got my insurance money and really couldn't have given a **%$^? any more.

I started in managed PT on my own in July, and another surgeon gave me both a cortisone shot and predisone pack. He said I had knee swelling which had to be addressed before I could begin to increase my quad size. The cortisone helped with my resting pain, and the predisone helped (briefly) deal with my stiffness. Slowly, my quad strength began to return, but I still had significant aching at rest, and any form of weights like the leg press would cause sharp, stabbing pains all around my kneecap.

In desperation I booked a trip to Vail and saw Dr S on October 12th. I've made some pretty bad decisions in the past year, but - given the circumstances - this was one of the best. He immediately diagnosed me with anterior interval scarring, and an MRI backed him up.

The MRI report read as follows: "There has been resection of the apex of Hoffa's fat pad and the infrapatellar plica. There is however prominent scarring along the residual deep aspect of the fat pad extending from the residual apex to the inferior pole of the patella. Also, anteromedial joint line scarring with prominent scarring of the medial retinaculum. Patellar tendon is normal. No patella subluxation. No patellar or trochlear cartilage loss; also, no localised subchondral edema in this compartment, but there is prominent stress response with bone edemsa almost throughout the patella as well as in the distal femur lateral femoral condyle anteriorly. There is also bone edema in the medial to posterior aspects of the medial femoral condyle and the posteromedial tibial plateau more towards the intercondylar region......

....There is no lateral meniscus tear. There is a tiny tear of the anterior body of the medial meniscus; remaining components of this meniscus are normal. There is mild chondral thinning and softening lateral margin medial femoral condyle with shallow fissuring (grade 2). The remaining medial compartment as well as all of the lateral compartment cartilage is normal."

My extension is 0-135, so basically close to normal, but I have a much harder time flexing my right leg than my left and i have sharp pains on my lateral side when I bring the leg back to full extension from the 'stork stretch'.

Dr S wanted to operate immediately and do an AIR and an LOA, along with any neccessary debridement. He said that I must immediately give up all impact sports (my PT had got me running for 1 min/walking 1min a week before) but that post op I stood a good (around 80% chance) of making a full recovery.

First of all, I realise I'm lucky compared to some here. My scar tissue seems specific, and I can still walk, as well as cycle and swim. Secondly, my cartilage seems to be in good shape, which gives hope. And I went to Dr S soon after my worries began, so I've skipped the process which many here seem to go through of seeing several OS's who don't understand arthrofibrosis before landing up with an expert.

My questions are these:

1) I work on a project specific basis, and have to spend a long time on my feet (I'm a reality TV director). There's no way that I can have this op and the neccesary rehab till Febraury at the earliest. My initial op was in April, so that'll be at least 10 months since the original trauma. I've read that the longer you leave scar tissue, and the more you stress it, the worse the possible complications (including possible cartilage damage and patella baja) and the smaller the chance of a succesful op. Does anyone know how accurate that is?

2) What's a reasonable expectation for recovery time to return to a) normal daily life and b) sports like running (if that'll ever be possible)?

3) How long should I safely plan to stay in Vail for rehab? I live in NYC on a 7th floor walk up, but I don't want to even contemplate returning there until it's 100% safe for my to do so.

4) What has people'e experience of this operation been? Has it helped you, or made things worse?

5) Does anyone have any experience of the bone bruising (edema) I'm suffering? Does it cause pain in itself? What are the consequences of it? I can't seem to find any info on it anywhere.

Thanks so much for any advice you can give.....it's much appreciated. Good luck with all your recoveries.

Will

[Jaci]

Hello Will,

Don't beat yourself up too much for falling for the 'good bedside manner;' it happens to many of us. The good thing is that you realized sooner rather than later that your OS was off the mark with your treatment. So now you have the best of both worlds, an OS who knows what is going on with your knee and who has good bedside manner.

About your questions:

1) I work on a project specific basis, and have to spend a long time on my feet (I'm a reality TV director). There's no way that I can have this op and the neccesary rehab till Febraury at the earliest. My initial op was in April, so that'll be at least 10 months since the original trauma. I've read that the longer you leave scar tissue, and the more you stress it, the worse the possible complications (including possible cartilage damage and patella baja) and the smaller the chance of a succesful op. Does anyone know how accurate that is?

The notes from surgery performed by an OS who had limited knowledge of AF stated that my articular cartilage was 'relatively pristine.' About 4 months later I had LOA/ AIR with one of the arthrofibrosis OS who found grade 3 chondral damage to my patella and trochlear groove and grade 2 changes to the lateral tibial plateau, so changes can happen very quickly. There really isn't anyway to predict whether or not it is safe to wait.

2) What's a reasonable expectation for recovery time to return to a) normal daily life and b) sports like running (if that'll ever be possible)?

I can't really offer any suggestion on this one, my situation seems to fall into the 1% of cases that Dr. Noyes talks about being resistant to treatment .

3) How long should I safely plan to stay in Vail for rehab? I live in NYC on a 7th floor walk up, but I don't want to even contemplate returning there until it's 100% safe for my to do so.

There is a lot of variation in how long people have stayed post-op. I think I've stayed longer than most people. I did so for a few reasons-- First, I do not have a physical therapist at home who is knowledgeable about treating arthrofibrosis. Second, I wanted to be near a doctor who would know how to intervene if my knee had a flare-up. Third, my knee does not tolerate travel very well.

I found that Dr. S generally doesn't give an absolute time frame that he thinks you should stay. He may ask a question like 'what's your plan?' When you answer, he may say something like 'that sounds okay' or 'the longer you stay the better off you'll be.' At 4 weeks post-op from one of my surgeries I mentioned that I was thinking of going home in a few days. Dr. S was strongly opposed to my leaving; it was the only time that he came right out and said that I needed to stay longer. I think he wants to be considerate of the fact that his patients do have lives waiting for them at home, but he also wants you to have the best possible chance for a full recovery. I tried to have my leaving time be as open ended as possible. However, I've tried to schedule my surgeries during the off-season so it made accomodations a little more flexible. Rather than staying in Vail the whole time, there is the option of going to Denver. There are some physical therapists that used to work with Dr. S and the drive back up the mountain is not too bad if you need to see Dr. S.

Be sure he knows about the 7th floor walk up. Yikes, I can't even imagine doing that.

4) What has people'e experience of this operation been? Has it helped you, or made things worse?

Definitely helped. No question in my mind that I was far worse off before having surgery. There is no way to predict if you will be one of that 1% group. Frankly, even if we could have predicted it, I know it would not have changed my approach to my treatment, other than perhaps being more adament about going to an OS who had the knowledge and experience to help me. Although, things have turned out far different from what we had hoped, I will never regret going to SH and being treated there.

I have a few articles on the procedure and can email them to you if you are interested.

5) Does anyone have any experience of the bone bruising (edema) I'm suffering? Does it cause pain in itself? What are the consequences of it? I can't seem to find any info on it anywhere.

I've had the same problem. My interpretation is that the bone edema is an indication that the joint is under stress, most likely due to mechanical changes from the scar tissue. The mechanical changes can lead to chondral damage, that's why it's so important to treat arthrofibrosis in a timely manner. Here's a link to an article that gives a good explanation of how arthrofibrosis changes the joint forces:

http://www.physsportsmed.com/issues/200 ... /eakin.htm

If the link doesn't work, I can email the article to you.

That's all I can think of for now.

Take care,

Jaci

[willp]

Hi Jaci,

Thanks so much for replying in such detail - really kind of you and I appreciate it.

You've made me think very hard about the urgency of this operation. As I mentioned, I was planning on having the procedure in February on the basis that I start a new work project tomorrow which will take me through till the end of Jan. But I'm now seriously wondering if I need to speak to my bosses and see if they can find someone else to take my place, and find out from Steadman what the earliest he can do the procedure would be.

That wouldn't be a good career move for me, but if I damage my cartilage then I'll always regret it.

I would love to read the papers that you have on the procedure. I can send you a private message with my email. I've got lots of hard thinking to do and decisions to make, and the more info I have the better.

Sorry that you're troubled so much by a genetic predisposition to grow scar tissue. It's a horrible situation to be in.

Thanks again,

Will

[Janet]

Will:

Jaci answered your questions so clearly, there's not much more to say. As for waiting, February isn't really that far away, but as she says, there's no way to know what kind of damage may happen during that time. In order to give yourself the very best possible outcome, I would say the sooner the better.

I'm so glad you found this site and are educating yourself. If only I knew 'then' what I know now! Keep asking your questions and good luck.

Janet

[Jaci]

Hello Will,

Please don't let my knee situation sway your decision. I think my knee is on the outer extremes of the bell curve, so it's probably not a very good example, other than for what can happen when one's healing response is out of control. I think all you can do is weigh your options and make the decision that feels right to you. Hopefully, neither your career nor your knee will suffer as a result.

I'm keeping my fingers crossed that you have a case of non-recurring arthrofibrosis and that it's been caught early so you have no permanent damage. It would be great to have another success story on the board.

Take care,

Jaci

[JaneB]

I had LOA/AIR eight months after an ACL repair which resulted in AF; by that time I already had chondral damage. My .02: don't wait.

JaneB

[willp]

Jaci and JaneB,

Thanks for your replies. I can't get an answer from SH about whether November or December are possible for surgery right now, but regardless, I think I need to at least give myself the option of corrective procedures. So i'm 90% sure I'm not going to do the job....I need to let them know for sure tomorrow.

Jane, your story is a salutary warning, and more or less corresponds with what Dr S said. He wanted to operate on me immediately, but I was (and am) terrified of more surgery given that's what got me into this mess in the first place. If you don't mind my asking, what level of chondral damge did you sustain?

Jaci - thanks agin for sending me those documents. I realise that our knees are very different, and I'm hoping that I don't have reccurring AF. No one can make hard and fast diagnoses for other people on the basis of this board, but we can learn from each other and make our own decisions. Again, hearing how a few months made the difference to your cartilage makes me think that the best route is to at least put myself in a position where I'm able to have surgery in a month or so if I choose and if the availability is there. By turning the job down I'm not commiting to having surgery, and while I'm blowing a great career opportunity, they might be limited in the future if I develop chondral changes. Besides, so far my employer to be has been understanding, and I think she'll continue to be provided I don't prevaricate too much.

Thank you both again.....hope you're doing well.

Will

[JaneB]

Hi Will,
I can answer a few more questions, I think. I am exceedingly glad that I had the AIR/LOA; I almost chickened out because of the first surgery's poor results, but it was a leap of faith that restored (mostly) the quality of my life. I would have been significantly disabled and limited without it. I do understand how frightening it is to consider another surgery after such a disaster but in my case it salvaged a great deal.

I spent three days in the hospital; I could walk pretty well about a week later (I hadn't been able to walk normally for eight months). My pain was almost nothing compared to what it had been. I had significant extension and flexion problems before; I had almost normal ROM very soon. It was terrific! I was back to work within three weeks; could have gone sooner, but I also had to do PT five days/week for several weeks and spent a month on the CPM 8 hrs/day. You MUST do the rehab to have good results.

I had grade 2 chondral damage; it may be worse by now but I don't know.

JaneB

[ski_bum]

Will,

I went from 'mild' (Grade 1) chondral damage to fairly severe (Grade 3) in one year--and in that year I did *no* impact sports (running, jumping etc). This was found in two separate, AF-related surgeries--both to clear out scarring in my fat pad, caused by an inept surgeon. The progression can be quite fast. The likely explanation for the change in my case is that it may be residual damage from the original ACL injury just now occuring. An alternative explanation, as Jane and Missy have suggested elsewhere, is that it might be related to other factors (a possible immune system response?)

In any event, I can sympathize with the pain of scar tissue in the fat pad--I found it very painful (post ACL surgery)--and it shut down my quad recovery almost completely. Even now, nearly two years later, there is a different in quad size, although both my legs are very strong. I could neither fully extend nor flex my leg; nor could I walk without pain. But the PT and surgeon at the time told me it was all in my head--that I wasn't 'working hard enough.' I got a second opinion from an AF specialist and, after the 1st AIR, had both better ROM and much less pain the day after surgery. The scarring reoccured, but minimally, a year later, so I had surgery again to clear it out.

Good luck.

Andy

[JaneB]

Hi again Will,
Upon re-reading your MRI report it seems to say that you already have "mild chondral thinning.....grade 2". If I'm reading this correctly, all the more reason not to wait.

Hi Andy,
I was told those same words: that I wasn't "working hard enough" in PT! It makes me burn. In fact, I worked so hard it helped accelerate the damage!

Has anyone addressed the less-than-competent surgeon who contributed to his/her original formation of AF, either through neglect, poor technique, or whatever?

JaneB

[ski_bum]

I believe the surgeon got the message about the damage to the fat pad. It was likely that it was his fellow who caused it by poor technique during surgery. Seems that many, many surgeons don't understand that damage to the Hoffa fat pad will be filled in by scarring--which, in my case, led to my patellar tendon becoming adhered down to the fat pad (which was released during the AIR). And he certainly conveyed the message to the PT (at the top of his lungs) about how they had ignored me. The last time I saw him (when I came to say I was having surgery with Dr. E) we talked for 30 minutes and he truly listened, for the first time, about all that had happened. So something came from my experience.

I'm fine now, albeit with potholes, as I call them. Hopefully, these won't progress much more--it has already started snowing up in the mountains. But truthfully, I'm likely to be slowed down now, from age, from knees and from aching joints.

Andy

[willp]

Hi Jane, Andy, Jaci and Janet,

I owe you all a big thank you. Your advice (along with my own research and the diagnosis of Dr S) has persuaded me to put my knee ahead of my work. I pulled out of my freelance project and have a surgery appointment in Vail on the 1st or the 8th of December.

I'm terrified, but it's been reiterated to me by Dr S that there is no way of curing my condition by PT alone, and that the longer I leave it the worse the chondral changes might be.

After my previous experience I'm naturally sceptical of knee surgeons (I was conned onto the table for an 'exploratory' operation I didn't need). But I know that the SH clinic has no need to recommend surgery if someone doesn't need it.....they have so many people beating on their doors who DO need procedures. So jane, i can relate to your terror, and I'm glad you had positive results.

Btw, my I had grade 2 chondral changes a year or so ago in an MRI. I think that they were where my plica was impinging.

I'll be staying in Vail for at least a month. My insurance will cover most of it (phew!) and if I'm going to get the benefit of the clinic then I'm not rushing back to NYC before I'm better.

Jane.....that's a really good point you make about addressing your surgeon who made the original mistakes. I'm deliberately not going to do that until after my next surgery. It would make me too angry, and I want to know what Dr S discovers. Besides, it's happened. I think that a large part of the blame lies with the US medical system for giving massive financial incentives for unscrupulous surgeons to perform needless ops. (I'm British, but live in NY).

Andy, I hope you're able to make it out on the slopes soon. Slow or not, you're still able to be there....that's great news.

Bye for now,

Will

[Janet]

Will:

I'm so glad you decided to go ahead and have the surgery. I'm sure you won't regret it. The beginning of December will be here before you know it.

In my case, my patella baja and AF also caused chondral damage behind the patella. My original injury was 7 years ago. I am now going in for a TKR in 3 weeks (eek!). I certainly never thought this diagnosis would lead to a TKR in just a few short years, especially at age 49. But I keep telling myself that next year at this time, I'll be able to walk around the block, shop, go to the movies, etc. without pain!

You are getting treatment with a top surgeon while your condition is still fairly new. That should bode well for your future! Good luck.

Janet