Advertisement - Hide this advert





Author Topic: Capsular Repair & Arthrofibrosis... help!  (Read 1713 times)

Offline wyeth

  • MICROgeek (<20 posts)
  • *
  • Posts: 12
  • Liked: 0
Capsular Repair & Arthrofibrosis... help!
« on: June 12, 2017, 05:44:22 PM »
Hi everyone!

This is a bit of a saga, and I apologize in advance. Any help is much appreciated!!

I'm new to this forum and have never posted, but I have been reading through these posts and thought that someone out there might be able to help me. I have been experiencing severe, chronic knee pain since April 2016, when I crashed skiing. Before the crash, I was a super active, 22-year-old marathoner/mountain person, and now I would do anything to have even a fraction of that life back.

After the crash, my injury was diagnosed as an MCL tear by my orthopedist, who wouldn't let me get an MRI because he found the joint to be stable and believed rest and PT would make my pain go away. (Now I'm not so sure if that was an accurate diagnosis, and I kick myself for not demanding an MRI.) After months of worsening pain, no relief with the PT/RICE or a cortisone shot, and no real answer from an MRI, I saw a new ortho at the Steadman Clinic in Vail, CO who had me try a few different PT approaches and another steroid injection. When that didn't work, new MRI scans revealed an aggressive amount of scar tissue along the medial side of my knee, adhering to my meniscus and yanking on it when I walked. YAY. The doctor recommended arthroscopic surgery, which he performed in October 2016.

After months and months of rehab, my pain did not get better and was still inflamed and unable to do basic things (grocery shopping, standing for normal periods of time,) and my doctor basically threw up his hands without a clue/care in the world, and told me to try taking Advil (as if I hadn't tried that.)

I saw another doctor who came highly recommended to me, who found that my joint capsule had never closed after my previous surgery. There was a big hole right above where the majority of my pain was and has always been, allowing fluid to move where it shouldn't. He believed that the hole was causing inflammation in the joint, which had in turn caused scar tissue to develop more rapidly. He went in to repair the joint capsule (also gave me a PRP injection and cleaned up the scarring,) on March 30, 2017 and deemed the surgery a success. While he was in there, he found "thousands of tiny cartilage particles" floating in my knee, something he hadn't seen anything like before, which he believed was caused by the scar tissue rubbing against my cartilage. I took rehab very slowly to guarantee the capsule remained closed, but the pain has not gone away.

I'm nearly 11 weeks post-op, and I can't do anything beyond no-resistance spinning and very light mobility work without triggering intense pain. We had a new MRI a week ago, which revealed more scar tissue (yay) and a strange inflammation pattern in the soft tissue above where he repaired the capsule. I have to ice every 1.5 hours or else the joint becomes hot, red and intensely painful. I do not have an infection (we did bloodwork) and the pain is a deep ache/grinding sensation that gets bad to the point where I have trouble sleeping.

My doctor has me rubbing Diclophenac Sodium topical gel on the area where the soft tissue inflammation is occurring to try to get that to calm down and has me spinning daily to break up the scar tissue. If that doesn't work, he's recommending another surgery to remove the scar tissue in 8 weeks, citing that because we went so slowly with rehab to protect the capsular repair, rigid scar tissue formed more aggressively. Removing it would be the next step in "trending towards a healthy knee." I don't know if I believe this theory, mostly because I was doing exercises daily post-op to move the scar tissue around and my ROM and mobility is (and has always been) top notch.

I'm at the point in this process where I have lost a lot of faith in my doctors and in surgery to fix my problem. I'm in so much pain, I'm struggling with serious depression, and I've had so little success with this approach that I would really like anyone's advice on alternate approaches to pain management.

For the record, I notice no difference in pain with NSAIDs (prescription and over the counter varieties) and I eat a balanced, healthy diet. I'm curious if there are techniques people recommend for breaking up scar tissue and for making this inflammation go away. The mountains are calling and I'm dying to get out there!

Thank you so much for reading and for any advice you might have.


-Emily


P.S. Since I've never posted here before, please let me know if I did anything wrong or if this is an inappropriate place to post this. Also, I realize this is a saga... sorry about that. Thank you for reading.
« Last Edit: August 29, 2017, 05:47:12 PM by wyeth »
4/16/2016 MCL sprain, meniscal tear while skiing
10/6/2016 Scope to remove excessive scar, triggering arthrofibrosis
4/30/2017 Capsular repair + scope
8/10/2017 Scope

Offline Aly0108

  • Regular Poster
  • ***
  • Posts: 117
  • Liked: 5
Re: Arthrofibrosis, Inflammation, and Undiagnosed Pain? Help!
« Reply #1 on: June 13, 2017, 03:26:22 AM »
Hello,

Listening your body, no PT.

I had 5 PT nothing didn't work for me, worse, worse and a lot inflammation.

STOP USE CORTISONE.

START VERY EASY LIKE A BABY.

HELP YOUR KNEE, NO MORE SURGERY.

START WITH CELEBREX AND A LOT MSM, Same 1200 mg.

use a STIM for situlation muscle, better is Russian STIM.

 

Offline wyeth

  • MICROgeek (<20 posts)
  • *
  • Posts: 12
  • Liked: 0
Re: Arthrofibrosis, Inflammation, and Undiagnosed Pain? Help!
« Reply #2 on: June 13, 2017, 04:26:27 PM »
Hi Aly,

Thank you! I agree, I'm done with cortisone. Bandaid for a bullet wound, in my opinion. And I'm avoiding another surgery at all costs...

I have not tried MSM or Celebrex. I will look into both, thank you!

As for the PT, the problem now is that I can't start doing anything at all. Like even the slightest strength variation above mobility causes a lot of pain. I've been taking it at a glacial pace and I'm not sure there is a slower way to go... I'm at a loss, because I feel like nothing can improve if I can't strengthen my very weak leg.

As for a STIM machine, I tried that for a while but it caused more inflammation. Maybe a new/different machine will work. I will look into it.

Thank you!!!

-Emily
4/16/2016 MCL sprain, meniscal tear while skiing
10/6/2016 Scope to remove excessive scar, triggering arthrofibrosis
4/30/2017 Capsular repair + scope
8/10/2017 Scope

Offline Aly0108

  • Regular Poster
  • ***
  • Posts: 117
  • Liked: 5
Re: Arthrofibrosis, Inflammation, and Undiagnosed Pain? Help!
« Reply #3 on: June 14, 2017, 04:09:39 AM »
Hi Aly,

Thank you! I agree, I'm done with cortisone. Bandaid for a bullet wound, in my opinion. And I'm avoiding another surgery at all costs...

I have not tried MSM or Celebrex. I will look into both, thank you!

As for the PT, the problem now is that I can't start doing anything at all. Like even the slightest strength variation above mobility causes a lot of pain. I've been taking it at a glacial pace and I'm not sure there is a slower way to go... I'm at a loss, because I feel like nothing can improve if I can't strengthen my very weak leg.

As for a STIM machine, I tried that for a while but it caused more inflammation. Maybe a new/different machine will work. I will look into it.

Thank you!!!

-Emily

Read here a lot post about that, Now you need decrease your inflammation, that is very hard, it took moths. Start easy. When do you have inflammation muscle are weak a lot stress because swelling.


Offline Clarkey

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • Posts: 4022
  • Liked: 51
  • Never put 100% trust into a negative MRI scan!
Re: Arthrofibrosis, Inflammation, and Undiagnosed Pain? Help!
« Reply #4 on: June 14, 2017, 11:04:05 PM »
Hi Emily,

Sorry you are already going through an emotional roller coaster at such a young age not being able to be physically active is going to lead to frustration and depression. It's tough going through one surgery after another making the knee problem worse rather than better. Not having an understanding OS when your knee problems started adds to your anxieties as he refused to give you an MRI scan that was not very professional of him to have such a lousy attitude.

3 Cortisone injections for my scar tissue around my patella tendon in 2015 made no difference in fact might have made my right knee worse rather than better. It not a straight forward cure that only seems to numb the pain slightly.

Aly is right to gradually build up PT post-op or will be back on the operating table that has happened to me twice. Post-op to scope #1 my former line manager bullied me to do heavy lifting when I said to him I need to take it easy. Scope #2 was AIR surgery to remove the scar tissue from scope #1 that was ruined by a physiotherapist that made me do too much in one session 5 weeks post-op ruining the surgery, now require a 3rd scope to once again repair the damage caused by the incompetent physiotherapist.

I live in the UK and know that Dr. Mark Sanders is one of the best OS's in the USA for knee problems and injuries. I know how vast USA is in comparison to the UK that worth the journey if he can give you some helpful advise and treatment plans he may have in mind that would benefit you.

https://sandersclinic.net/about-dr-mark-sanders/

Never give up hope in returning to marathons and mountain climbing/walking. I have not been able to run since January 2013, I am still living in hope that one day I will be back running again for my local running club.

[email protected]
RK: PFPS, Arthrofibrosis & Tendinopathy
Scope #3 scheduled 26/01/18
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-Hip - FAI 04/04/17  RK 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline wyeth

  • MICROgeek (<20 posts)
  • *
  • Posts: 12
  • Liked: 0
Re: Arthrofibrosis, Inflammation, and Undiagnosed Pain? Help!
« Reply #5 on: June 19, 2017, 06:44:15 PM »
Hi Clarkey,

Thank you for the note, and I hope that we are both able to return to running soon! At the very least, I feel a lot less alone/crazy knowing that there are others experiencing this hellish, surgical roller coaster.

Dr. Sanders sounds like a wonderful doctor. I'm afraid I won't be making a trip to the UK any time soon (a trip to the local grocery store feels like an international journey at this point,) but I do really like my current doctor (Dr. Sterett at Vail Summit Orthopedics) and I'm getting a second opinion with Dr. Provencher at the Steadman Clinic tomorrow to get his assessment of my knee saga.

If you or anyone else reading has any suggestions on (1) another Colorado ortho worth seeing about Arthofibrosis, (2) good questions to ask an orthopedist about my condition, (3) medication or exercises I should be doing now and finally (4) specific approaches to post-op rehab to avoid excessive scar tissue build up, I would really appreciate it.


Thank you so much!


-Emily
4/16/2016 MCL sprain, meniscal tear while skiing
10/6/2016 Scope to remove excessive scar, triggering arthrofibrosis
4/30/2017 Capsular repair + scope
8/10/2017 Scope

Offline Clarkey

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • Posts: 4022
  • Liked: 51
  • Never put 100% trust into a negative MRI scan!
Re: Arthrofibrosis, Inflammation, and Undiagnosed Pain? Help!
« Reply #6 on: June 20, 2017, 06:48:31 PM »
Hi Emily,

Dr Sanders is based in the USA, he use to post on KG. The Steadman Clinic also has had mainly positive feedback from KG members with negative posts towards the Founder Dr Richard Steadman that carried on practicing well past is retirement age. Aged 80 this year born in 1937 retired in January 2014 aged 76-77. Dr Steadman created some well known surgical techniques of microfracture surgery that is now being used daily globally by OS's.

https://en.wikipedia.org/wiki/Richard_Steadman

Which ever OS you decide to see and go ahead with the surgery you are in safe and experienced hands, the whole team have excellent rating and experience.

https://www.thesteadmanclinic.com/our-doctors

Dr. Peter Millet has some excellent post-op advice and guidance after AIR surgery so have chosen the right centre for scar tissue problems. If I had the funding would fly out for treatment at the Steadman Clinic as they seem geared up towards dealing with scar tissue problem cases. Worth seeing him for Arthofibrosis because of his research into scar tissue build up and how to reduce it post-op.

http://drmillett.com/wp-content/uploads/articles/Rehabilitation%20of%20the%20arthrofibrotic%20knee.pdf

http://drmillett.com/dr-peter-j-millett-orthopaedic-surgeon-vail-colorado/

Ask about what happens after you woken up from the surgery, think he likes using a CPM machine to reduce the scar tissue building up to excessively to help improve ROM that is restricted if the knee movement if left too long by not moving the kneecap. Patella mobilisation and friction massage therapy are good ways to reduce the scar tissue once you are back home again.

Graston technique is another treatment for scar tissue that something done pre-op to see if it beneficial or not or several months pos-op. I was told by my OS that 6 weeks post-op is the critical time period when scar tissue builds up.

http://www.grastontechnique.com/home

Hope my advice is useful information and your appointment with Dr. Provencher went well for you, can see Dr. Millet if for some added reassurance unless you happy with what has been suggested by Dr. Provencher after seeing him today.

[email protected]
RK: PFPS, Arthrofibrosis & Tendinopathy
Scope #3 scheduled 26/01/18
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-Hip - FAI 04/04/17  RK 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline wyeth

  • MICROgeek (<20 posts)
  • *
  • Posts: 12
  • Liked: 0
Re: Capsular Repair & Arthrofibrosis... help!
« Reply #7 on: August 30, 2017, 09:32:45 PM »
Big update!

I saw Dr. Millet about my knee, who thinks that I have a combination of arthrofibrosis and nerve damage. He prescribed Lyrica and an oral steroid. The Lyrica didnít do anything, but the steroids gave me the first taste of relief in over a year! Although the inflammation didnít go away, it certainly lessened (down to like 4 ice sessions a day from 9-10), and I was able to get on a spin bike Ė and even bike around outside Ė for short periods. It made me feel so much better!

However, once the dose of steroids was done, the pain/swelling came right back. Millet recommended surgery to clean out the joint and to take a biopsy so test for alternate causes. I went back and saw Dr. Sterett to ask his opinion, and he injected lidocaine into the joint to see if the pain I was experiencing was caused by the inflammation or by scar tissue. Turns out most of it was scar tissue, with about 20% inflammatory pain, because with the lidocaine I was able to walk up stairs without too much difficulty. Ultimately, Sterett agreed with Millet that surgery was the next step.

It was a really hard decision, but on August 10 I went ahead with the surgery with Dr. Sterett. I felt that since he did my capsular repair, he knows my knee best, and that I feel comfortable with him doing the procedure. He said that it went well!

Recovery has been pretty dismal so far. Although my full ROM came back within 5 days, the inflammation is exponentially worse than it was after my last two surgeries. I had to rent my Game Ready machine for an extra couple of weeks, simply because my army of ice packs (I have 6 heavy-duty sleeves!) canít keep up. I take off an ice pack, and the knee is still hot. Not warm, like hot hot hot. And red.

Iíve been taking Diclophenac and antibiotics in case of infection, with limited results.

Iím feeling really, really down. Three surgeries in less than a year is so insane, and my personal life has really taken a nose dive for the worst. I feel really isolated Ė a lot of it my own doing, because all Iíve been able to do this year is lie in bed with my leg up Ė and the only person I have left to help me is my boyfriend and, unsurprisingly, our relationship has been going south fast, too. I donít feel like I have a lot of people to talk to about how Iím feeling, and even the people I do talk to donít get it. How can they?

How do other AF souls deal with the isolation of it?

Seeking a therapist doesnít even appeal, because the pain of getting to/from the office and spending an hour without an ice pack terrifies me. Blargh.

Then thereís the second part of this, employment. I work in the outdoor industry at a skiing/trail running brand, and it kills me to talk about the things I love all day without being able to do them. Clients come into town, and the office empties out to go hiking/skiing/playing outside for meetings, while Iím stuck in the office. And working at an office is terrible on my knee Ė I canít elevate it, and the stress of going to/from the office has triggered at least a handful of panic attacks since the start of this.

How do people deal with their employment with arthrofibrosis? I donít want to let my team down, but I feel like Iím drowning and I can no longer be the best employee I can be. I have my dream job, but without my health itís miserable.


I know Iím only three weeks post op, and I feel melodramatic saying it, but Iím feeling depressed beyond any level of depression Iíve experienced during this process. I feel like no one has my back, and none of the medical professionals meant to take care of me are helping. My physical therapist has VERY limited experience with AF, and although I love her to bits, I feel like Iím directing sessions more than her based on the research Iíve done on my own, which is disconcerting.

And then thereís Dr. Sterett, who I also love but who I feel has checked out a little bit. Maybe my case has ceased to pique his interest? I donít know what it is, but since my surgery I feel like he has been quick to write off my concerns about inflammation. When the two week mark came around and they took my stitches out, he barely looked at my knee and said to ďdouble down on strength!Ē and ďyouíre out of the woods for scar tissue!Ē I mean, I would love for both of those statements to be true, but theyíre quite frankly not and it frustrates me that he is so quick to write it off. And he has experience with AF! He worked under Dr. Steadman for years! I donít know.

I tried getting on a spin bike on Monday (10min! Woo!) and it felt fine. But then, ten minutes later, my knee blew up and hasnít calmed down since.

What should I do? The person I found a little solace through was the physical therapist I saw at Howard Head the day after my surgery, who was the first PT Iíve spoken to who had experience with folks with capsular repairs. He said the recovery has a pretty grim outlook. I said something along the lines of ďwell, I guess time will heal, right?Ē His answer was to shrug and say: ďthat would be an optimistic approach.Ē

Whatís that supposed to mean? Does anyone else have experience with capsular repairs?


Anyway, thatís the deep dive. Iíll try to keep this more updated. If youíve read this far, thanks for your time! It feels a little better to vent.

Xoxo

Wyeth


P.S. Today is also my birthday. Since I've been able to walk as a child, the tradition has been to do a sunrise / all day hike on my birthday with friends and family. I haven't been able to do that for the past few years, and its weighing on me today more than I thought it would. The kind messages from loved ones are so nice to have, but most of these people don't know my knee story, and they include something along the lines of "I hope you're living it up on a peak somewhere!" With each one of those i sink a little deeper. This is so hard.
« Last Edit: August 30, 2017, 09:36:41 PM by wyeth »
4/16/2016 MCL sprain, meniscal tear while skiing
10/6/2016 Scope to remove excessive scar, triggering arthrofibrosis
4/30/2017 Capsular repair + scope
8/10/2017 Scope

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 56
  • Liked: 4
Re: Capsular Repair & Arthrofibrosis... help!
« Reply #8 on: August 31, 2017, 10:33:02 AM »
Hi Emily,

I'm really sorry to hear your story, I have had a similar bad experience, so I can sympathize. I can't really say "happy birthday" for yesterday, but best wishes to you.

My experience was after a double TKR, and I was confined to bed for about 6 months, it nearly drove me mad. I was also a very active outdoors person who loved hiking. A while back I had to leave the wedding of a good friend because I broke down in tears, their wedding was all centered around the outdoors and outdoor activities, mountaineering etc, and the reminder of what I was missing was too painful.

I'm looking at surgery again now, 6 1/2 years since this all started, and I've been doing a lot of reading on arthrofibrosis, you might have read my recent posts. I can't advise you on what you should do, but maybe some of what I've been told or read might be of help. I recently got an online second opinion from the Cleveland Clinic in the US, which didn't tell me anything particularity new, but they did point out that infections need to be ruled out with a particular test.

This might be relevant for you, because you have so much heat and redness in your knee, a sign of bad inflammation. I know you said that you were on antibiotics, but if you do have an infection it might be resistant to what you're taking. Taking anything long term will encourage resistance. Anyway, this is what I was told "I would suggest having a complete work up to rule out infection in your knee including a knee aspiration to evaluate the cell count and differential, in addition to bacterial cultures. I would hold the cultures for at least 14 days to rule out low virulent bacteria like P. acnes."

Other things that I have learnt are that the more surgery/injury you have, the more likely you are to have problems with arthrofibrosis, so from my point of view, I would only have surgery if it is absolutely necessary. That is, the knee is not mechanically functional. After an injury the fat pads and bursa in knees store up inflammatory cytokines ready for the next insult, so you start off with more in store. My knee won't bend enough to do stairs and I can't use it for getting in and out of a chair because of a trapped Hoffas fat pad, so I'm thinking I will risk surgery, but I might still chicken out.

It seems from my reading of scientific papers that arthrofibrosis is the result of a war between the inflammatory cytokines (chemicals) that your body makes in response to injury, and resolvins, which your body makes to heal and stop the inflammation. In your case the inflammatory cytokines are winning. These cytokines cause pain, that is one of their main functions, and they also cause depression, so don't be surprised that you get depressed, quite apart from the frustration and worry you have. In an animal these effects make an injured animal hide until they heal, so they don't put themselves in danger.

Normally the body makes resolvins to stop the inflammatory cytokines, but for some reason in some people this process doesn't work properly. Resolvins are made from omega 3 fatty acids, and because I don't eat oily fish, or indeed any fish, I've started taking fish oil tablets. I think it pays to have the starting nutrients that are needed. Resolvins are also generated by low dose aspirin, between 75 and 100 mg per day, so I have started that too. Anyone with bleeding problems shouldn't take aspirin and fish oil, and there are other medical problems and medications that they might interfere with, so check with your doctor. Sorry if you have read all this already.

Don't expect your OS or GP to know about resolvins, they have only recently been discovered, or even about the inflammatory cytokines that are involved. Immunology is a highly specialized field, and OS leave it to the rheumatologists. I haven't spoken with an OS yet that knew about that side of things, they just do surgery. Which is why so many people with arthrofibrosis feel let down when things go wrong after surgery, the OS doesn't have any more "tricks" left up their sleeve and doesn't know what to do with them.

They also typically don't know that NSAIDS such as Ibuprofen stop the production of resolvins, and that you're not doing yourself any favours by taking them. The oral steroids you were on sound like a good option to me, I would see if you can get back onto them for a period. I think you're allowed to take prednisolone for about 3 months with careful supervision.

Other things I have read about inflammation, and which have sound science to back them, are that stress is bad, and mindfulness and meditation are good. Exercise is good, but in your case you would need to be very careful not to overdo it. If you want to know more about anything I've said I can explain some more and give you references.

If you get any signs of stiffness in the knee, or you can't straighten it out, get onto a CPM for a period. You would probably need to hire one. CPM is the only reason I can still function to some degree with my knee, but you do need to be careful and not over-bend and cause damage.

All the best,
Kay

1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline wyeth

  • MICROgeek (<20 posts)
  • *
  • Posts: 12
  • Liked: 0
Re: Capsular Repair & Arthrofibrosis... help!
« Reply #9 on: September 01, 2017, 06:40:54 PM »
Hi Kay!

Thank you so, so much for the detailed response. I really appreciate it. Reading back over my much-too-long post, I was definitely in need of a serious pity party ventÖ Eek.

I can definitely relate to having to leave typically fun social events because of the sadness these kinds of injuries bring on. It weighs on you when youíre there, and even more so when you leave and realize you canít really connect with your friends and loved ones as you used to. Anyway, I have not had a TKR, but they sound terrifying and I am sorry youíve had to go through that.

What kind of surgery are you looking into right now? I hope that it goes well, if you decide to go through with it.

I think you were spot on about the infection. A couple hours after I posted, I ended up going to the ER because the pain became so much worse so quickly. I called me OS and they thought it could be a blood clot. The ER doctors determined there wasnít a blood clot, but they thought that there was certainly an infection Ė they guessed it was cellulitis and put me on an antibiotic IV drip. However, my bloodwork came back clean, which is really strange. Iíve had to go back into the ER every 8 hours since for another dose, and (hopefully) my final one is this afternoon. Iíll move onto oral antibiotics from there.

I saw my OS yesterday between sessions to ask about it, and he agreed it was probably an infection. If the antibiotics donít work, he would like me to go into the OR to clean it out with antibiotic fluid.

Iím like 40 hours into the antibiotics with no improvement. They arenít allowing me to ice so that the antibiotics can reach the skin, which has put me in more pain than Iíve been in in a while. My whole joint is stiff and angry and so, so swollen.

I feel very discouraged. I canít remember the last time anything went right with me kneeÖ.

Anyway, I did read your post about cytokines/resolvins, and it is super interesting. Iíve already been taking daily fish oil supplements but will certainly look into getting some aspirin in the routine as well. I definitely do not have any more surgeries planned for the near future. Even if this most recent one doesnít alleviate my problems, Iím going to try waiting it out and seeing what happens. Torturous, at the least.

The animals hiding when theyíre healing reference is fascinating. Iíd never thought about it like that, but it makes total sense. I suppose Iíll be using that as an excuse to be a total hermit from now one. Hehe.

NSAIDS Ė does this include all anti-inflammatories? Everything from Aleve to Diclofenac? I do agree, once Iím out of the infection woods, Iím going to try to get back on the steroids.

As for stress, I do want to figure that part out. If the mind isnít healed, the body canít heal either, and my mind is certainly a little worse for wear. Once Iím able to walk properly, Iím going to try to see a sports psychology and develop more of a routine around mindfulness. Right now, Iím too deep in the depression cycle to start that now, but Iím hoping to pull myself up once the pain subsides a bit.

I have my CPM machine and will continue to use it as best I can. Thank you.

Any other pieces of advice for someone struggling with all of the waiting around?


Cheers,

Wyeth
4/16/2016 MCL sprain, meniscal tear while skiing
10/6/2016 Scope to remove excessive scar, triggering arthrofibrosis
4/30/2017 Capsular repair + scope
8/10/2017 Scope

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 56
  • Liked: 4
Re: Capsular Repair & Arthrofibrosis... help!
« Reply #10 on: September 02, 2017, 12:15:58 PM »
Hi Emily,
Wow, you've really been through the works! That must be so painful! At least now you're getting the treatment you need, but unfortunately I have found that I need to be proactive in my treatment and sometimes drive things to happen if I don't get the tests etc that I think I need.

I'm not a medical doctor, but I am a microbiologist, environmental. I've spent a lot of time using electron microscopes to do advanced imaging and analysis of the biofilms that bacteria make when they occur in large enough numbers, in any environment that is moist. A biofilm is when all the bacteria stick together in a thick layer bound together in a sort of glue that they make, which is very resistant to antibiotics because the bacteria are protected inside their matrix. This is a big problem if it happens inside a joint, and the biofilm is on the bone (or a prosthesis).

I don't want to worry you, but I think you need to know the possibilities about what could be going on. I really hope that the ER doctors are correct, and your infection is cellulitis, that is usually easier to treat because it's in the surface tissues. The less good thing would be if the infection is inside the joint. This is sometimes called septic arthritis, and it often needs more aggressive treatment than antibiotics alone. If it's septic arthritis it's really, really important to get rid of the infection, because it can be life threatening if it's left for too long, and the longer it's left, the more difficult it is to get rid of.

So far as I understand it, infections that are inside knees aren't always detected in blood tests, because blood doesn't get inside the knee capsule, it's a sealed capsule normally, with synovial fluid lubricating it. That's why a needle aspiration of the joint is done to see what infection may be present, and what type of antibiotic is needed. Also, the infection might not be bacteria, it could be fungi or even a virus, and blood tests are often only for bacteria. Antibiotics only kill bacteria, not fungi and viruses, they are unaffected. And if it is bacteria, they might be resistant to a certain class of antibiotic, and another class might be needed, or a biofilm may need to be physically removed so the antibiotic can reach the bacteria.

Gee, that's all a bit heavy, but it's better to be informed I think.

Yes, Aleve and Diclofenac inhibit COX 2. So far the science indicates this class of medication inhibits the production of resolvins, however probably not every NSAID has been tested individually for their effect on resolvins. Aspirin has a different mechanism and interaction with COX enzymes, increasing production of resolvins.

I'm glad that you have a CPM, that's good because you probably won't be able to exercise much for a while and with a CPM you can keep the joint moving.

When you're feeling better, you might want to read "Mindfulness for life" by C. Hassed and S. McKenzie, a book on mindfulness and meditation. It's an easy and very interesting read, written by two doctors, and it's fully referenced with scientific papers listed at the back.

Hopefully after the infection is cleaned up you won't need any medications for pain or inflammation.

Al the very best,
Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 56
  • Liked: 4
Re: Capsular Repair & Arthrofibrosis... help!
« Reply #11 on: September 04, 2017, 03:42:32 AM »
Are you OK Emily?

I hope your knee is starting to feel better, but if not, don't feel embarrassed about venting, we all need to do that sometimes. It would be good to hear from you.

I didn't answer your question about the surgery I'm considering having. I would like to have the scar tissue cleaned out so I can have enough bend to function better, but probably the main thing will be to get the Hoffa's fat pad (at the front, under the patella tendon) cut back. It's heavily scarred and is always protruding into the knee joint, so if I use that leg for things where a bent knee is needed, for example getting in and out of a chair, the fat pad gets pinched and I get sharp excruciating pain. Then the knee gets a lot more painful for a period.

Hoffa's fat pads have a lot of nerve endings in them, so it's kind of like getting a finger tip slammed in the door every time I use that leg bent. So I've trained myself not to use it except for walking on the flat, and my quads are almost non-existent. I can't use a bike or anything like that.

Even if the scar tissue comes back after surgery, if the Hoffa's fat pad has been cut back out of the joint that should make life easier. But there is always the risk that things will get worse, and I'm Really not looking forward to the pain and struggle that I know will be there for quite a while after surgery. Anyway, I won't be able to do anything until after October, so I have time to think, read, and get prepared if that is possible.

I've just started reading a book called "Into the Magic Shop" by Jim Doty. It's a top read telling his story about going from a neglected child in a very poor family to a top neurosurgeon, thanks to an amazing woman that he met, and I'm finding it hard to put down. But it also has links to exercises you can do to practice mindfulness and meditation, you can read them online here
http://intothemagicshop.com/exercises

I know that you're not able to do mental exercises while your knee is in crisis, but if you want a good read I can recommend it.

All the best,
Kay


1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline wyeth

  • MICROgeek (<20 posts)
  • *
  • Posts: 12
  • Liked: 0
Re: Capsular Repair & Arthrofibrosis... help!
« Reply #12 on: September 04, 2017, 07:56:56 PM »
Hi Kay,
 
Sorry for the delay. Last week took it out of me, and I've spent the last few days recovering. Things are feeling slightly better Ė I wake up without much pain/heat in the knee, so I'm able to do my ROM exercises in the morning without too much trouble. My knee is definitely stiff, and it takes longer to get it warmed up than before, but all of the ROM I had is there. However, as the day progresses, it gets angrier and more painful, and I've found I can't do any exercises pain-free after 4ish in the afternoon.
 
That said, I think (hope?) the doctors were right about the cellulitis, because compared to Wednesday it's way better. I had really light flu symptoms, my entire leg was tomato red and the pain/heat was off the charts worse than anything I'd experienced.
 
My OS didn't believe the infection was in the joint either, and that was my first fear, for all the reasons you said, but he feels certain that its superficial. The late onset of the infection (three weeks post op) combined with minimal internal swelling (most of its coming from outside the joint capsule, he said) and a positive response from antibiotics makes me want to agree with him. That said, I'm monitoring it closely, and if the symptoms don't continue to improve my next step is to get an MRI and aspiration.
 
Ėdeep breathĖ
 
Question for you Ė have you read of instances in which AF patients over ice? When I went to see my OS on Thursday, he said not to ice more than 4 times per day. My jaw nearly hit the floor! Even before my surgery, I must have been icing about 9x/day because of ongoing problems with heat/pain Ė it's about the only thing that offers relief! After my last surgery (3/30,) my knee never really chilled out, and I'm wondering if maybe that's something I did to myself by icing it too much.
 
It just gives me SO MUCH ANXIETY when my knee gets hot. I'm terrified that letting it get hot and irritated will build scar tissue and lead to another year of chronic pain. I didn't ice for three days while I was on the IV antibiotics, and it was horrible. So much pain. My knee swelled up to the size of a grapefruit and hasn't shrunk much yet... The last two days I did 5 ices per day (more than prescribed, but the pain got to be too bad at night,) and it was really difficult.
 
(I sound like some sort of ice junky. Whew!)
 
 
The next thing that gives me anxiety is my joint capsule. Have you read anything about capsular repairs? I had a big hole in mine after my first surgery (no idea why/how it happened, but it was horrible and leaked synovial fluid into my leg for months!) that needed closing. My OS said they happen here and there in knee arthroscopies and that repairs are normal, but that the knee pain from the repairs tend to bother patients for up to a year afterward. I've dug around the internet at great lengths to find information about it, and I haven't found much of use. I will, however, dig around for a photo of what my knee looked like after my first surgery. It looked like a golf ball was sitting under the skin of my medial/distal portal! Totally alien looking...
 
Anyway, my anxiety is that this most recent surgery poked another hole into the capsule that hasn't closed, which is causing all the pain/swelling in that area. It isn't as extreme as the golf ball I had after the first surgery, but there is certainly a ball that pops up beneath my portal when I flex. I'm panicking that this will mean another repair.......

 
And thank you for the book recommendation! I will definitely check it out. The last knee-relied book I picked up was Lindsey Vonn's biography, and it left a sour taste in my mouth. I'd be glad to move to another! At first I felt so inspired by how Lindsey dug herself out of the injury cave so spectacularly, but soon I started feeling unfairly resentful and angry at her. My mind kept going to I wonder what my injury journey would have looked like if I had her resources? and I hated how jealous it made me. I had to put it down...
 
 
Wow, your problems with the fat pad sound horrible. I had some issues in mine before my last surgery, but luckily they never got to be that bad. Surgery is terrifying, especially when the outcome is so uncertain. How long has it been since your last surgery?
 
If you do decide to go through with it, you definitely have enough time between now and then to arm yourself with all of the tools you need to guarantee a positive outcome. As for the struggle that comes after any surgery, I feel you there. I'm in the thick of that right now, and it's no fun. But if there's a chance that it will amount to improvement, it will be worth it! Plus, you'll have the knee guru community at your back if you ever need to vent along the way. :)


Hope you're having a good long weekend!


Cheers,

Emily

4/16/2016 MCL sprain, meniscal tear while skiing
10/6/2016 Scope to remove excessive scar, triggering arthrofibrosis
4/30/2017 Capsular repair + scope
8/10/2017 Scope

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 56
  • Liked: 4
Re: Capsular Repair & Arthrofibrosis... help!
« Reply #13 on: September 05, 2017, 12:28:36 PM »
It's good to hear from you Emily, and to hear that your knee is starting to feel better, that's great! Your description of your leg sounds So painful!

You probably won't want to read what I'm about to say, because you've had enough trauma and just want it to be over, but I'll say it because it's important. If it was my knee, I would ask, on what basis do they think it's cellulitis? The only difference between that and septic arthritis is how deep the infection goes. As you no doubt know, it's critically important that septic arthritis is treated as soon as possible, because if it is there, it's doing real damage to your joint. Apart from being potentially life threatening.

Your flu symptoms, which I guess would be fever, are a sign that the infection is pretty full-on. I'm not an expert, but from what I've read, even if an infection started as cellulitis, that is, a small patch of red skin,  it can spread and go into the joint, and become septic arthritis (I'll call it SA).

The next question I would have for my OS (or a different OS), if it was my knee is - how does he know that the swelling is not inside the joint? I'm guessing again, that he said this because you have good ROM. I read a paper (see below) that makes a few interesting points, you can download the pdf at
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2669005/

Some points in the paper are: there are no specific physical findings that will allow you to make a definitive diagnosis. Not everyone with SA has a fever. The paper says "The other frequently quoted diagnostic signs (of SA) are decreased range of motion and severe pain with manual compression of the joint; however, well-designed studies have yet to show any correlation between these classically taught findings and the diagnosis of a septic joint."

Another point from the paper, is that you should not rely on blood tests to diagnose SA, the paper is very clear on this. It goes on to say that the only way to know if SA is present, is to get a positive bacterial culture from an aspiration of synovial fluid from a joint. There are other tests that should be done on the synovial fluid as well, but a culture is the important one, according to this, as the other tests can give false negative results.

The paper ends with "A patient must be considered to have septic arthritis until proven otherwise. It is critical to promptly diagnose and treat the joint infection, which has a potentially devastating course."

Also, the aspiration and culture will indicate what type of antibiotic is required to properly clean out the infection. But I don't know what the advice is regarding a joint aspiration if there is cellulitis present. An MRI would show if there was swelling inside the joint, which would be an indication of SA, and it might/should show what is causing your "gold ball", which is important to know.  At least the antibiotics you're on are helping, so that should buy you some time to do an MRI.

The last thing I'll say regarding infection is that you don't know how long your knee has been infected. It very likely happened from one of your surgeries, but you don't know which one, because bacteria can sit idle until their numbers slowly increase, then when they hit a critical number, they communicate with each other, change what they're doing, and go off big time. It's called chorum sensing.

Regarding your question about icing, I think that the main concern is that you can burn yourself by freezing the tissue. So if you don't put the ice directly on your skin, which I'm sure that you don't, and you allow the knee to warm up before you start the next icing, then I can't see that there would be a problem. But you could ask your OS about that. If you need the pain control, then you need it.

That's great that you're looking for another book to read  :) And thanks for your best wishes for my surgery. My TKA was 6 1/2 years ago, I've really been too passive about getting treatment for it, but it seems that the only OS in Australia that wants to consider surgery on it is in South Australia, so I'll have to do some traveling. But I'm booked for the 19th for a chat with that OS, fingers crossed that goes well!

Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline wyeth

  • MICROgeek (<20 posts)
  • *
  • Posts: 12
  • Liked: 0
Re: Capsular Repair & Arthrofibrosis... help!
« Reply #14 on: September 06, 2017, 11:55:16 PM »
Can I just say that you are the best for talking through all of this with me? It feels really nice to chat with someone who actually gets it and has gone through a similarly devastating injury. Thank you.

I really appreciate you following up on the SA. It is definitely a scary problem to have and, rest assured, I'm keeping an eye on it. The swelling, heat, redness and pain have continued to go down since last week, and my antibiotics go through Saturday. I saw my OS today and discussed SA with him, and he was very very certain that wasn't the problem, and I feel good about that. I can get into the details of why he and I feel that way if you'd like, but the gist is that we both feel strongly that the level of inflammation I'm experiencing is consistent with someone 4 weeks post op, and we're keeping an eye on it.

I also had tissue biopsies taken during my two most recent surgeries to test for various types of infection, and both came back negative. So if there is an infection in the joint, it would be from this most recent surgery.

Our main point of discussion today was the pocket of fluid pouching out over my medial portal. Like I said in my last post, I was really, really anxious that it indicated another hole in my joint capsule and, as it turns out, my anxiety was totally warranted.

I talked at great lengths today with Dr. Sterett about it, and he agrees that I have a hole in the capsule. It's a bizarre looking thing that I can't really describe that well, but trust me when I say that it is hard to miss. Although the hole is considerably smaller than the one after my first surgery, it's definitely there. It seems that the tissue in that area of my medial knee is incredibly thin and weak, and that it failed to close up after this most recent surgery.

My OS gave me a leg immobilizing brace, and we're going to see if it closes up on its own over the next 2-3 weeks. If it doesn't heal, we're going to do an MRI and determine next steps. So, for the next 2-3 weeks, I'm going to twiddle my thumbs as all of the scar tissue I've kept at bay since surgery creeps into my immobilized joint and pray that my knee figures itself out...

The problem with my hole in the capsule is that there is a potential for it to get much, much worse. It took five months for a surgeon to diagnose the problem after my first surgery, and during that time the synovial fluid leaking out of the joint essentially turned the tissue around the hole to "mush." (That was the actual term my OS used. Very doctor-ly.) My body encased the area with scar tissue, started swelling everywhere, and actually damaged some areas of cartilage as a result. Bad news bears.

Anyway, I'm feeling pretty horrible about the whole thing. The entire point of my second surgery was to close the capsule, and this most recent surgery was to remove the scarring caused by that repair. If my capsule doesn't close up on its own, I'm right where I was before my second surgery, except with considerably less strength in my leg and mind.

I'm so angry at myself. I wish I hadn't had that surgery, and I wish that my doctor had told me how bad the capsular tissue was before operating on it. Although I had severe scar tissue pain pre-surgery, it was livable. I could ride a bike for short distances and grocery shop without too much problem. Now, I'm terrified about where to go from here. I cannot have more surgeries, but I also do not want to be condemned to a life of chronic pain and disability. I've got into every surgery with as positive of an outlook as I could muster, and every time my expectations have been dashed to the side and I've had to live with a worse and worse quality of life.


Anyway, I'm glad that you booked an appointment with the OS! 6 1/2 years is such a long time to carry the burden of arthrofibrosis, you deserve to have some relief. Are you feeling confident about it? What's your thought process going in? Tell me more, if you're comfortable!



-Emily
4/16/2016 MCL sprain, meniscal tear while skiing
10/6/2016 Scope to remove excessive scar, triggering arthrofibrosis
4/30/2017 Capsular repair + scope
8/10/2017 Scope

 















support