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Author Topic: Arthrofibrosis Research Being Done Anywhere????  (Read 100363 times)

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Offline ruilx

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Re: Arthrofibrosis Research Being Done Anywhere????
« Reply #150 on: April 15, 2016, 12:25:44 PM »
http://onlinelibrary.wiley.com/doi/10.1111/ans.13540/abstract

Hydraulic distension of the knee: a novel treatment for arthrofibrosis after total knee replacement (case series)

Offline DogfacedGirl

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Re: Arthrofibrosis Research Being Done Anywhere????
« Reply #151 on: October 06, 2017, 03:40:21 AM »
Hi folks, this is an update on a topic that I've mentioned on the "Observations on arthrofibrosis" thread, but I thought it might be more relevant here. It's about Patients Like Me, an excellent data gathering site that will help us all to easily see what treatments have worked for people with arthrofibrosis, how well, and what side effects they have.

However, how well it works is dependent on how many of us contribute our data. At the moment the page on arthrofibrosis doesn't look that impressive, because it doesn't mention the main symptoms that we suffer, or some of the main treatments that we use, such as surgery and its outcomes. I approached one of the site managers about this, and here is part of the reply:

"I appreciate your feedback on the content of the condition report page. You've raised some excellent points. Unfortunately, these pages are designed to become more robust as more patients track their experiences. As you've noticed, they may not be as informative as they could be when only a handful of patients are reporting that condition. However, the more people that join and track their treatments the better this page will be and the more people that share their experience with CPM for arthrofibrosis, the higher up it will be on this report.

I understand that learning the site can be a bit overwhelming, but we have a great team of folks who are available to help new members find what they are looking for! Feel free to tell the other patients not to hesitate to reach out to us if they have any questions (there are some great resources in our help center and this is one of the ways to reach out with questions about the site)."

So please do get on there and join up! Once you choose "arthrofibrosis" from the type-in box for your condition, you can then enter treatments, there are more options available than is apparent, but they only show up once you enter something in the box.

You can find the page at
https://www.patientslikeme.com/conditions/2991

I'll keep at it and see if I can get more symptoms listed, and if you suggest some directly to PLM that would add weight to it.
Thanks!
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 ruilx

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Offline ruilx

  • MICROgeek (<20 posts)
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Offline DogfacedGirl

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Re: Arthrofibrosis Research Being Done Anywhere????
« Reply #154 on: October 18, 2018, 12:29:45 AM »
Thanks very much for the link, that sounds like a very exciting breakthrough!!

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

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Re: Arthrofibrosis Research Being Done Anywhere????
« Reply #155 on: March 28, 2019, 01:49:45 AM »
Hi folks,

A new paper has been published on arthrofibrosis, you can download it at
https://www.nature.com/articles/s41413-019-0047-x

Kneeguru gets a mention  :)
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

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  • Neil TheElephant knee packed up carrying his trunk
Re: Arthrofibrosis Research Being Done Anywhere????
« Reply #156 on: April 01, 2019, 08:18:12 PM »
Congratulations Kay :)

What a fantastic achievement must be very proud 8)

My third right knee surgery has been a success with a 2nd Air working better this time around. Invasive physiotherapy caused excessive scarring around the patella tendon after scope #2. Did gradual exercises, walking with less of a limp at a slightly faster pace. Running will never happen again that I accept after trying out all the options available. Ignore my last NHS PT saying I could do some light jogging! Causes me anterior pain and discomfort, best avoiding or will wear out the knee. Showing wear and tear after a lateral tear repair and I am in my 40s. Do not want a microfracture surgery just yet, pushing through the pain barrier would be unwise and foolish! Speeding up wear and tear.

[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

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Re: Arthrofibrosis Research Being Done Anywhere????
« Reply #157 on: April 03, 2019, 03:48:04 AM »
Thanks Clarkey, if it helps people then I'm happy  :)

That's terrific news that your 2nd Air surgery has been successful!! It's great to hear that! Yes, I think it's very wise to be careful with exercise and delay any more surgery for as long as possible.

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 DogfacedGirl

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Re: Arthrofibrosis Research Being Done Anywhere????
« Reply #158 on: April 11, 2019, 06:12:03 AM »
Several news media outlets have published a story about the arthrofibrosis paper, for example see
https://medicalxpress.com/news/2019-04-therapy-painful-joint-condition.html

If there is anybody in Australia who would be happy to be interviewed about their experience with arthrofibrosis, please let me know, because there may be an opportunity to discuss it either on radio or TV.

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

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  • Neil TheElephant knee packed up carrying his trunk
Re: Arthrofibrosis Research Being Done Anywhere????
« Reply #159 on: April 12, 2019, 10:38:14 PM »
Hi Kay,

Shame I live on the other side of the planet in the UK would have taken part in sharing my right knee saga.

"ACL injuries appear to be particularly prone and it appears that over-aggressive exercise during rehabilitation can cause or even worsen arthrofibrosis, making it a permanent condition."

Same applies with other types of surgical procedures, excision of the plica and fat pad increases AF highly. Thankfully had light PT sessions after my 3rd scope unlike the 2nd scope post-op with aggressive PT exercises ruining my AIR clearout that was mentioned in my pre-op assessment report. Know my scar tissue is still there that will never completely go away. Admit defeat in no longer being able to run. Just frustrating after all the hard work and training for my very 1st half marathon slipping on the ice ended my long distance marathon running in January 2013 at the age of 34. My timing was good during training so of course, was naturally gutted.

[email protected]
« Last Edit: April 12, 2019, 10:39:56 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

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Re: Arthrofibrosis Research Being Done Anywhere????
« Reply #160 on: April 13, 2019, 02:14:46 PM »
Thanks Clarkey, you certainly have extensive experience with arthrofibrosis! It's great that you have come to a somewhat satisfactory conclusion after all the pain and disability over the years, well done. There are so many tragic stories of people who are crippled by it.

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