HELP! my AF is back

Adhesions, internal scarring, fat pad syndrome, infrapatellar contracture, patella infera (baja)
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wyeth
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HELP! my AF is back

Post by wyeth »

Y'all... I need some help.

I was an arthrofibrosis forum regular in 2017, after three scar tissue surgeries left me in debilitating pain and some of the worst AF / inflammation I've ever experienced. After years of intense rehab, where I basically spent everyday icing, stretching and moving the joint to keep it from scarring over, the inflammation finally dissipated enough for me to strengthen, and I was able to slowly build back my leg's strength. In 2019, I was able to run again (!!) and other than a few bumps here and there, my knee has been healthy ever since. It felt like a miracle.

However, my journey since hasn't been all clear. I've had a lot of issues with other inflammatory injuries popping up ever since, from strange and long-lasting bouts of tendonitis and swelling in my joints that would take ages to heal. Most doctors have chalked these injuries up to overuse, but every time it happened, I couldn't help but think of my knee, and wonder if it's all connected.

Fast forward to six weeks ago: I developed some quad tendonitis in the aforementioned knee. It didn't hurt that badly - the level that I could push through, certainly - but I decided to rest it up, because this knee always makes me nervous after what I went through. However, despite rest, over the last six weeks, my knee has steadily worsened. It's consistently hot, red and swollen, aches when I do pretty much anything, and isn't improving. I've been doing everything I can to reduce the inflammation, icing it all the time, elevating and massaging the joint to keep it from scarring over. I also took prednisone for 5 days and it did absolutely nothing, and I won't be taking any cortisone shots. I just need it to get past this acute pain phase so I can breathe normally again. I'm so, so scared.

The pain is JUST like it was when I was diagnosed with AF, like this horrible grinding/hot/constant ache, and I'm sick with anxiety over it. It's all I can think about, and the sheer panic I feel is overwhelming. I just can't believe I'm back to this kind of pain after so long in the clear. I barely got through it the first time.

What recommendations do you have for getting this little knee to calm down? Diets? Medications? Specialized doctors? Help. I can't stop crying over this, I feel like I can't breathe.

I've seen people recommend Omega-3s and low-dose aspirin, and long-term oral prednisone to battle the inflammation stage. Do these approaches work? I feel like PT has really let me down, but if there's anything that's changed since I went though AF in 2017, I'm all ears.

And in case anyone is curious about what happened to me in the initial injury, it's all here: viewtopic.php?t=69176 )

Thank you so much for your help.

-Wyeth
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Re: HELP! my AF is back

Post by The_KNEEguru »

I read your original story. What explanation was given to you at the time of your original problems regarding the multiple cartilage bits in the knee? Was chondromatosis mentioned?
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Re: HELP! my AF is back

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An MRI scan (see the second image here - https://orthoinfo.aaos.org/en/diseases- ... procedure. - would show if this 'flare-up' is related to chondromatosis.
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Re: HELP! my AF is back

Post by wyeth »

Hi! Thank you for reading. I was never given an explanation at the time of my original problems, sadly. I have an appointment with someone at the Steadman Clinic next week with the goal of getting an MRI - will definitely report back. I don't *think* I have chondromatosis - I had a number of MRIs after the surgery in which they saw the cartilage bits, and it didn't appear on any of that imaging.
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Re: HELP! my AF is back

Post by The_KNEEguru »

Well, that is good to know. Do mention to the Doc that earlier finding, though, as it may still have relevance. At least you are going to be in good hands as you try and find out why this is occurring a second time.
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Re: HELP! my AF is back

Post by wyeth »

Ok, here’s the big ol’ update.

I ended up seeing Dr. Ruzbarsky at the Steadman Clinic, who I really liked. It was my first time seeing him, so I was nervous, but he led with a startling amount of empathy, really listened to my story and was completely aligned with my preference of (1) avoid surgery at all costs (2) we need to do everything possible to figure this out ASAFP.

I got an MRI, which confirmed that I have a fair amount of scarring in and around my problem zone (the dreaded medial zone) and cartilage thinning in the same area (which explains the flying cartilage fragments... fml). There is also some effusion in the joint around that area (he said it wasn’t much, but likely explains why my knee has felt so inflamed.) Not sure what exactly is causing these things to be so angry/inflamed - could be the arthritis/scarring itself, or quad tendonitis causing the irritation externally, but either way, I’m not sure whether to be happy that it’s not in rough shape or super bummed that I just have more question marks.

He put me on meloxicam (hasn’t done a thing) and then gave me a toradal injection into the joint. I was really excited about the injection - it wasn’t a thing back in my AF days, and the only other time I’ve heard about is when my partner is watching football and it’s referenced as a “miracle drug for joint pain” (love that). That said, it did absolutely nothing for me.

In my last appointment (pre-injection), the doc was optimistic overall, and encouraged me to try to get back to activity sooner rather than later, since he isn’t worried about my knee structurally at all and wants me to “push it” which raised all sorts of red flags for me. When I asked about possibly triggering AF if I pushed it too soon, he said I shouldn’t worry because there wasn’t blood in the joint (?) This was news to me, I guess I really didn’t know blood had anything to do with it, but either way I am still so so freaked out by the whole thing.

As for next steps… I’m at a loss. I’m anti-cortisone shots, but I know some people have had success with PRP? What else can I be doing to get this inflammation down? Honestly I feel like if I get get the joint to just CALM I might actually get somewhere, but it's pissed and just won't quit...

TYSM
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Re: HELP! my AF is back

Post by The_KNEEguru »

Disappointing for you, so sorry. I was wondering if exercise in a cold medium might be helpful - have you done any hydrotherapy?
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Re: HELP! my AF is back

Post by Tangodancer »

Following for any updates. Fingers crossed for you. Do you have full ROM?
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Re: HELP! my AF is back

Post by wyeth »

Totally forgot to post the update, but here she is!!

I ended up getting a second Torodal shot about two weeks after the first, except this time, my doctor injected it straight into my "problem area" (where all of my scarring is around the distal/medial side of the knee, whereas before he had kind of injected it into the joint more generally from up top) and when I tell you my pain vanished... it VANISHED. Honestly, have never felt anything like it. I went on a run three days later and was back at the gym to rehab it the following week, totally pain-free. Absolutely wild. Will definitely be trying toradal if it ever flares up again, I couldn't recommend it more!!
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Re: HELP! my AF is back

Post by The_KNEEguru »

That sounds wonderful!
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Re: HELP! my AF is back

Post by wyeth »

It really was!! Just up until I broke my tibial plateau and fibular head in a freak accident only a few weeks later.... bad luck hitting me hard this year. Now dealing with wayyy too many complications that toradal, sadly, cannot fix. ::)
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Re: HELP! my AF is back

Post by Randdy27 »

Given the severity of your symptoms and your history with arthrofibrosis, it's crucial to seek specialized medical attention as soon as possible. A doctor who is experienced in treating complex knee conditions, such as a sports medicine specialist or orthopedic surgeon with expertise in arthrofibrosis, can provide a comprehensive evaluation and personalized treatment plan tailored to your needs.

In addition to medical intervention, there are some lifestyle and self-care strategies that may help alleviate inflammation and promote healing. Omega-3 fatty acids, found in fish oil supplements or certain foods like salmon and flaxseeds, have anti-inflammatory properties and may offer some relief. Low-dose aspirin can also help reduce inflammation, but it's important to discuss the appropriate dosage and potential risks with your healthcare provider.
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