Advertisement - Hide this advert





Author Topic: Your experiences of arthrofibrosis  (Read 6511 times)

0 Members and 1 Guest are viewing this topic.

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 117
  • Liked: 16
Your experiences of arthrofibrosis
« on: October 27, 2017, 02:14:37 PM »
Hi everybody,

Inspired by the stories I've read on this forum, I've started to write a review paper on arthrofibrosis of the knee, in collaboration with the head of Pathology and Laboratory Medicine at a university. I hope to publish a review that will be openly available and contribute to understanding why the condition strikes, and look at new and upcoming possibilities for treatment. In addition, I believe that the experiences of people with the condition needs to be heard, and would like to add this aspect to the paper based on this forum. 

An example of patient experience that I would like to add is the long term outcomes of arthrofibrosis, that is, what happens in the years following diagnosis. If you've had it long term (more than 2 years perhaps), please do tell me: does it get worse over time? Or does it get better, or stay the same? No doubt there will be different experiences, and it would be terrific if you could tell me about them.

For everybody with arthrofibrosis, if you've had surgery to lyse scar tissue, or an MUA, what was the outcome, and how soon was the treatment after diagnosis? Or other treatments that did or didn't work. I'm interested in pain and inflammation as much as range of motion, as this aspect is often overlooked in the literature.

I won't quote or name any individuals, only generalised outcomes, and if you like, you can PM me instead of posting publicly.

The publication process is slow in science, but I hope to have the paper published early next year.

Thanks very much,
Kay

PS, my dog got over her recent near-death experience, and is OK for the short term, with the help of many meds  :)

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 Clarkey

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • Posts: 4182
  • Liked: 75
  • Neil TheElephant knee packed up carrying his trunk
Re: Your experiences of arthrofibrosis
« Reply #1 on: October 27, 2017, 06:36:27 PM »
Hi Kay,

Great news about your dog that he is ok for the time being and that the meds are helping him. Good luck with your research review paper on arthrofibrosis of the knee as everyone that has it reacts differently to other patients. My ROM is good and pain is ok until I start to speed up my pace then the medial pain strikes right by the tibia. I am still waiting for my consultation report from my last appointment on July 12th that not arrived in the post yet, I will email the hospital after doing this post. My consultation with hip OS came 3 months after my appointment that was June in September, the knee report should have been in the post by now.

I had to close my account with 'Patients Like Me' put my primary condition as Asperger syndrome and my other conditions including arthrofibrosis of the knee. I requested autism spectrum condition (ASC) rather than autism spectrum disorder (ASD) that I find offensive language terminology for the autistic community in 2017. Not alone many find it offensive and hurtful. My request was rejected so messaged again saying like to terminate my membership and within the hour said we do it for you.

Condition sounds more pleasant than disorder, the USA setup the website want to stick to ASD! In the UK more autistic organisations are using the term ASC on autism awareness alert cards as an example to show if someone autistic while in distress in a public place. They should allow both terms to be used and disappointed they wont consider ASC as well as ASD for those that like using that terminology. I mixed ASD with LSD a class A drug which is why I think it needs to change.

I am happy to take part in your survey once you have got all the questions you want to ask written as an attached email document, I can give will PM my email address. I have done several surveys on autism, be a nice change to answer questions about my ongoing right knee problems. You might find all the answers already in my saga post-op diary. The papers I have filed out online for universities I can sign in and out and carry on answering or correcting the questions over a few days weeks rather than in one go.

[email protected]
RK: PFPS, Arthrofibrosis, Tendinopathy, Five cortisone injections
16/01/18 Anterior interval release, distal patella excision, lateral meniscal repair
18/07/14 Anterior interval release  
16/11/09 Medial plica excision, fat pad trimming

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 117
  • Liked: 16
Re: Your experiences of arthrofibrosis
« Reply #2 on: October 28, 2017, 01:48:51 PM »
Thanks Clarkey.

I'm sorry to hear you had a bad experience with Patients Like Me, they seem to have very definite ideas about things. Terminology is important.

Good luck with your report from the OS, that's a long time to wait.

That's a good idea to write some defined questions about experiences with arthrofibrosis, I'll get onto that.
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 Clarkey

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • Posts: 4182
  • Liked: 75
  • Neil TheElephant knee packed up carrying his trunk
Re: Your experiences of arthrofibrosis
« Reply #3 on: October 28, 2017, 09:12:29 PM »
Hi Kay,

Glad you are looking into the experiences of patients with arthrofibrosis as long as the questions are easy to answer with not too much medical jargon. If it was not for the scar tissue build up in my right knee would be 85% ok my walking pace is slow/limp for someone turning 39 in December with the patella tendon scarring the main culprit with patella decompression surgery as the only option left. My OS plays it safe and only does surgery when he thinks it is required and a benefit. Leaving it in his capable hands. The Patella tendon is often attacked by arthrofibrosis and the fat pad that are my main knee problems. Patella decompression of the fat pad that was trimmed during scope# 1 that keeps on inflaming which is why there is an increase in effusion inside the knee that's likely to be performed during surgery.

[email protected]
« Last Edit: October 28, 2017, 09:29:24 PM by Clarkey »
RK: PFPS, Arthrofibrosis, Tendinopathy, Five cortisone injections
16/01/18 Anterior interval release, distal patella excision, lateral meniscal repair
18/07/14 Anterior interval release  
16/11/09 Medial plica excision, fat pad trimming

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 117
  • Liked: 16
Re: Your experiences of arthrofibrosis
« Reply #4 on: October 29, 2017, 09:59:57 AM »
Thanks for your info Clarkey.

Below are 11 questions for everybody that has arthrofibrosis, or has had it (even if some time ago), who would like to contribute towards the information I'll present in our review paper. You don't have to answer all of the questions if you don't want to, and I won't quote or name any individuals, only generalised outcomes. If you like, you can PM me instead of posting publicly.

There is no rush to get back to me with answers because I'll be writing for a while, but every answer will be much appreciated.
•   How long have you had arthrofibrosis?
•   What are your main symptoms? For example, range of motion, swelling, pain.
•   Did the arthrofibrosis start after the initial injury, or after surgery, or only after repeated surgeries?
•   How many surgeries have you had in total (this could be none), and how many of these were to lyse scar tissue?
•   How many manipulation under anaesthesia (MUA)s have you had (this could be none)?
•   Have you had any other treatments for arthrofibrosis, and if so, do you think it helped or made it worse? For example, exercise rehabilitation, diet, massage.
•   Did the surgery or MUA make the arthrofibrosis better or worse? If worse, in what way?
•   If you’ve had repeated surgeries or MUAs, please tell me about the outcome for each one in terms of arthrofibrosis symptoms.
•   If you’ve had arthrofibrosis for more than 2 years, have your symptoms got better or worse? If worse, in what way?
•   Are you under 40 or over 40?
•   Are you male or female? This will help to understand if there is a difference in susceptibility.

Thanks again,
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: 117
  • Liked: 16
Re: Your experiences of arthrofibrosis
« Reply #5 on: October 31, 2017, 01:18:31 AM »
Hi Clarkey,

Thanks for the likes  :) I look forward to seeing your responses about your experiences.

I can see that there has been some problems with your rehab, I have heard that from others as well, in other countries. Some of it comes from ignorance, in your case it seems like there were a number of factors. I know that anything that creates a bleed inside the knee can bring on arthrofibrosis, especially if it's not long after surgery, so maybe a tendon or ligament suffered a tear from over-bending.

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 Clarkey

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • Posts: 4182
  • Liked: 75
  • Neil TheElephant knee packed up carrying his trunk
Re: Your experiences of arthrofibrosis
« Reply #6 on: October 31, 2017, 08:16:32 PM »
Hi Kay,

You are right that many medical professional have no or very little knowledge about AIR surgery and arthrofibrosis. After my AIR in July 2014 when I asked the nurse what I had done she said she was not sure might have had lateral release surgery which I knew was wrong. I was lucky that my OS on my way out of the ward quickly explained to my mum and I that I had AIR surgery to remove scar tissue build up around the patella tendon.

Looks like my physiotherapist had no previous experiences dealing with patients after AIR surgery. Thought he would with 25 years in practice at the time of seeing him, ended up making my knee worse off than it was pre-op to scope #2 of AIR.

Started answering your questions, hope to have it done this week for you that I am happy to share on KneeGuru.

[email protected]
 
RK: PFPS, Arthrofibrosis, Tendinopathy, Five cortisone injections
16/01/18 Anterior interval release, distal patella excision, lateral meniscal repair
18/07/14 Anterior interval release  
16/11/09 Medial plica excision, fat pad trimming

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 117
  • Liked: 16
Re: Your experiences of arthrofibrosis
« Reply #7 on: November 01, 2017, 08:29:54 AM »
Hi Clarkey,

Yes, I had a very serious response to overly aggressive exercise rehab too. The physiotherapist was qualified, but didn't believe that I was in real pain, and told me to keep pushing harder. I did, until my quads refused to function. The end result was a patella tendon that was shortened by 1/3, and I was unable to bend the knee for more than a few seconds without pain. I had to sell my car becasue I couldn't drive it. That has improved over the years, but the damage is permanent.

Thanks for working on the questions.
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 Clarkey

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • Posts: 4182
  • Liked: 75
  • Neil TheElephant knee packed up carrying his trunk
Re: Your experiences of arthrofibrosis
« Reply #8 on: November 01, 2017, 06:00:58 PM »
Hi Kay,

Sorry that you have also had bad experiences post-op, too many physiotherapists seem to think they know best when it comes to excessive scar tissue build up. Pushing the knee in an aggressive manner saying it ok to push through the pain! I have a high pain tolerance and felt intense pain after my PT session as the knee gave out felt like my kneecap had landed on broken glass.

Your patella tendon toke the full brunt of the aggressive excercise during your post-op rehab by a fully qualified physiotherapist causing your patella tendon to shorten by 1/3 which is medical negligence as the damage done is permanent, it's hard to prove and sue to get some compensation. Fear that my physiotherapist I saw after scope #2 has damaged my patella tendon that's the main concern and key factor for my 3rd scope of patellla decompression surgery. AIR and maybe might find other problems while inside which is good to know for the future.

Maybe can add another question. Did your physiotherapist during the early stages post-op end up making your knee worse with aggressive exercises and what new injury did you sustain.


Can change the wordings to how you like to have it set out that is just an suggestion do not have to take my advise.

[email protected]
RK: PFPS, Arthrofibrosis, Tendinopathy, Five cortisone injections
16/01/18 Anterior interval release, distal patella excision, lateral meniscal repair
18/07/14 Anterior interval release  
16/11/09 Medial plica excision, fat pad trimming

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 117
  • Liked: 16
Re: Your experiences of arthrofibrosis
« Reply #9 on: November 02, 2017, 01:31:30 PM »
Hi Clarkey,

Yes, it's certainly true that pushing too hard can be seriously detrimental to a knee with arthrofibrosis. But I'm sure there are lots of good physiotherapists out there too, that help people, so I don't want to suggest that's not the case. I hope to cover both perspectives with the question "Have you had any other treatments for arthrofibrosis, and if so, do you think it helped or made it worse? For example, exercise rehabilitation, diet, massage."

At least you and I have enough experience now to know to listen to our bodies! I hope you get your report soon.
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 Clarkey

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • Posts: 4182
  • Liked: 75
  • Neil TheElephant knee packed up carrying his trunk
Re: Your experiences of arthrofibrosis
« Reply #10 on: November 02, 2017, 06:18:29 PM »
Hi Kay,

Here are my answers to your questions that should be helpful research on arthrofibrosis of the knee.

•   How long have you had arthrofibrosis?

Since November 2009 after medial plica excision and fat pad trimming arthroscopy on my right knee.

•   What are your main symptoms? For example, range of motion, swelling, pain.

Pre-op to scope #1 knee felt heavy and restricted, I was able to run at a slow pace for about 5 minutes until the knee pain increased so high that I had to stop running with a heavy sensation around the bottom of my right kneecap

Post-op after scope #2 ROM was good with anterior knee pain around the bottom of the kneecap by the tibia. Painful around the tibia as soon as I try to increase my walking pace and can no longer run or take part in sporting activities since scope #2.

•   Did the arthrofibrosis start after the initial injury, or after surgery, or only after repeated surgeries

After scope #1 of medial plica excision and pat pad trimming took 18 months to fully recover until I was able to return to cross country running. Fell onto black ice in January 2013 directly onto my right knee and have not been able to run since the fall. Scope #2 of anterior interval release surgery (AIR) has has caused anterior knee pain around the bottom of my tibia.

•   How many surgeries have you had in total (this could be none), and how many of these were to
lyse scar tissue?


Two in total on my right knee scope #1 of medial plica excision and trimming of the fat pad in November 2009. Originally the surgery was a diagnostic arthroscopy after a negative MRI scan with some fluid around the fat pad. Scope #2 anterior interval release surgery (AIR) in July 2014 from scope #1 of medial plica excision and fat pad trimming causing the scar tissue build up.

Scope #3 due in January 2018 is for grade 1 effusion with tenderness over the inferior pole of the patella with a positive fat pad impingement test and will have decompression of the patella tendon and fat pad and anything else that might show up during surgery.

•   How many manipulation under anaesthesia (MUA)s have you had (this could be none)?

No MUA as ROM is good that improved after seeing a sport physiotherapist.

•   Have you had any other treatments for arthrofibrosis, and if so, do you think it helped or made it worse? For example, exercise rehabilitation, diet, massage.

Three cortisone injections post-op after AIR surgery over a one year period in 2015 and three sessions of Extracorporeal shockwave therapy treatment in 2016 (EWST) for chronic patella tendonitis causing pain around the bottom of my tibia. My right knee got worse with my knee giving out regular with intense pain and discomfort after aggressive excercise PT session that ruined my whole rehab 6 weeks post-op. I saw a new physiotherapist with with no experience or knowledge in post-op exercises after AIR surgery. 

•   Did the surgery or MUA make the arthrofibrosis better or worse? If worse, in what way?

Never been through MUA, my ROM is good the anterior knee pain is more weight bearing than bending rotation pain and instability.

•   If you’ve had repeated surgeries or MUAs, please tell me about the outcome for each one in terms of arthrofibrosis symptoms.

After surgery in November 2009, recovery was slow and waited 18 months post-op until I was able to return to cross country running. Two cortisone injections pre-op and post-op that helped to numb the pain for a limited time period. Slipped on black ice in January 2013 directly onto my right knee and have not been able to run since the fall. A very tight plical band was rubbing on the medial femoral condyle causing bone marrow oedema. My OS was going to perform a microfracture surgery and ended up with AIR surgery to remove scar tissue that had built up excessively from scope #1 in November 2009.

•   If you’ve had arthrofibrosis for more than 2 years, have your symptoms got better or worse? If worse, in what way?

The anterior knee pain has improved with less tightness and pain since building up my quads. The pain is still around the tibia that is very easy to pinpoint, can feel some knotting at the bottom of the tibia that came on suddenly during the summer of 2016. Limping and walking at a slower pace since an aggressive PT session 6 weeks post-op to scope #2 of AIR.

•   Are you under 40 or over 40?

Under 40.

•   Are you male or female? This will help to understand if there is a difference in susceptibility.

Male.

I have tried to give a much detail that I can remember and hope the answers I have given is useful information for sufferers of arthrofibrosis and the medical community. Thanks for composing the questions and starting a survey.

[email protected]
« Last Edit: November 02, 2017, 06:22:21 PM by Clarkey »
RK: PFPS, Arthrofibrosis, Tendinopathy, Five cortisone injections
16/01/18 Anterior interval release, distal patella excision, lateral meniscal repair
18/07/14 Anterior interval release  
16/11/09 Medial plica excision, fat pad trimming

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 117
  • Liked: 16
Re: Your experiences of arthrofibrosis
« Reply #11 on: November 02, 2017, 11:06:12 PM »
Thanks a heap Clarkey, that's really terrific!! I appreciate the effort you've put into your response!

People are rather quiet on this forum at the moment, but if I get enough responses to the survey I'll post a summary of experiences. Hopefully people are quiet because things are going well for them  :)

My reading of the scientific literature is going well, I'm finding out a lot of very interesting facts about arthrofibrosis and the underlying biology that drives it, and I'm excited about communicating it all in the paper. I'm trying to write it so that it is easily understood by everybody.

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 Clarkey

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • Posts: 4182
  • Liked: 75
  • Neil TheElephant knee packed up carrying his trunk
Re: Your experiences of arthrofibrosis
« Reply #12 on: November 03, 2017, 07:06:49 PM »
Hi Kay,

Thanks for the like and happy to share my experiences with my right knee scar tissue problems. I look forward to reading about your research into arthrofibrosis after gathering other patients experiences with how they are coping and managing with arthrofibrosis would make very interesting reading.

Agree the KG forum is not as active as it use to be back in the early 00s and 10s it was really active. Had group of regular members sharing our knee problems. The sudden boom in social media that people join Facebook group pages on knee problems as an example. I am not into social gets too personal and back stabbing with many trolls out there posting nasty comments. I like to stick to traditional forums rather than social media for advice on knee problems.

I just got back home today after looking after 6 chickens while my sister was away for a couple of days with her husband in Belgium. Opened the letter about my consultation report and sent my right hip consultation instead of my knee that I have already received. Frustrating messing up a simple request, it is not the 1st time they have made made mistakes. NHS are a World class health provider, just find the admin poor and below standards. Had to complain politely many times, have kept all the emails as proof dating back to 2013 to The Patient Advice and Liaison Service (PALS)  or would not have had appointments or reports if I said nothing at all.


[email protected]
RK: PFPS, Arthrofibrosis, Tendinopathy, Five cortisone injections
16/01/18 Anterior interval release, distal patella excision, lateral meniscal repair
18/07/14 Anterior interval release  
16/11/09 Medial plica excision, fat pad trimming

Offline DogfacedGirl

  • Regular Poster
  • ***
  • Posts: 117
  • Liked: 16
Re: Your experiences of arthrofibrosis
« Reply #13 on: November 05, 2017, 07:45:11 AM »
Hi Clarkey,

That's a good point, that social media is why people aren't very active on the forums anymore. So far you're the only person to answer the questions I posted, I hope some more people find the time to do it. I'm not on Facebook etc either, I'm too private a person to want all my details made public and to have tracking of my activities.

That's a bummer that you got the wrong report in the mail. Our health system is also underfunded and overworked.

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 Clarkey

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • *
  • Posts: 4182
  • Liked: 75
  • Neil TheElephant knee packed up carrying his trunk
Re: Your experiences of arthrofibrosis
« Reply #14 on: November 05, 2017, 07:12:58 PM »
Hi Kay,

It becomes frustrating when the letters came fairly quickly within 6 weeks after consultation. Since 2017 becoming longer and longer the waiting time to receive the a consultation letter. I always email rather than call as it is then in writing. Here is the paragraph that I sent and made it clear want my knee report and not my hip report letter posted.


Sorry to be trouble you once again after seeing Prof Snow on July 12th for a final consultation before my scheduled surgery. I appreciate the NHS is more overstretched taking longer to receive an outpatient letter. I am seeing Mr ***** for my right hip after seeing him on 16th June and got my outpatient letter mid September. Coming into November and still have not  had a letter in the post from Prof Snow consultation appointment which is why I making the enquiry as it has been over 3 months.


I was looking forward arriving back opening the letter and then saw it was the same letter I got in the post in September about my right hip. Was very frustrating as it was a Friday evening, hopefully will get a reply tomorrow. Made it clear in my email I want my report from my Prof Snow that was mentioned in an earlier email from the previous consultation before the 12th July that was also over 3 months wait, sent the correct report 1st time.

I can add more to my questions about arthrofibrosis that the ESWT sessions has helped with the anterior knee pain able now able to walk longer distances without too much pain. Just comes if I try to increase the pace or do larger strides or going up and down steep slopes. The pain is easy to pinpoint at the bottom of the tibia. There might be some wear and tear and a micofracture would not be a shock or surprise or cartilage tear a possibility which is why I happy to go for a diagnostic arthroscopy at this stage. This time round I will not have a physiotherapist pushing me too hard!

I am very lucky I have a physiotherapist specialised in arthrofibrosis a mile down the road and will book to see her even though Prof Snow says I wont need to see one post-op. Will feel more relaxed and at ease seeing her with his vast experience. Would like to walk quicker with less of a limp, running would be a bonus would be a good outcome post-op.

Only six arthrofibrosis physiotherapists in the UK, Lesley Hall who is based where I live in Droitwich Spa.

https://arthrofibrosis.com/practitioners/#1497656797544-15f6e098-e5b5

It's good to see someone that knows about arthrofibrosis even if it costs more it is worth paying the extra increase for expert post-op PT sessions.

[email protected]
« Last Edit: November 06, 2017, 08:57:58 PM by Clarkey »
RK: PFPS, Arthrofibrosis, Tendinopathy, Five cortisone injections
16/01/18 Anterior interval release, distal patella excision, lateral meniscal repair
18/07/14 Anterior interval release  
16/11/09 Medial plica excision, fat pad trimming