KNEEtalk

The REHAB DEPARTMENT => Soft Tissue Healing Problems - Arthrofibrosis => Topic started by: DogfacedGirl on October 27, 2017, 02:14:37 PM

Title: Your experiences of arthrofibrosis
Post by: DogfacedGirl 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  :)

Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey 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]
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl 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
Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey 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]
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl 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
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl 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
Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey 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]
 
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl 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
Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey 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]
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl 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
Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey 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]
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl 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
Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey 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]
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl 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
Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey 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]
Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey on November 09, 2017, 09:42:39 PM
Hi Kay,

With your broad knowledge in arthrofibrosis can the scar tissue if you have overworked the knee increase limping rather than feeling pain. Since doing a few gardening jobs locally my walking pace has slowed down even more with left ankle and heal aches as I am not walking properly impacting the good leg joints. Maybe the effusion in the knee increased doing physical manual work with more inflammation around the patella tendon.

I feel pain is as soon as I attempt to walk quicker pressure builds up around the bottom of the kneecap with intense anterior pain and discomfort as if I am pressing all my full weight onto my right kneecap. Something is not right, happy to risk and gamble a 3rd scope so my OS can do a full examination of the entire knee anatomy. A weight bearing pain, it is fine sitting down and sleeping with no pain or discomfort until I stand up feeling anterior knee pressure.

How is your knee behaving lately, improving, remaining the same or getting worse.

[email protected]
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl on November 10, 2017, 01:59:28 AM
Hi Clarkey,

I'm sorry to hear your knee is getting worse. It's very hard to say, but maybe the gardening work has upset the knee and more scar tissue has formed, which would make it difficult to have a normal range of motion while you're walking, and so you limp more. Do you have full extension, so your leg goes straight when walking?

More scar tissue could also increase the patella baja, pulling the kneecap in and down, and putting more pressure (= pain) on the Hoffas fat pad that sits there. The Hoffas fat pad might also be attached to the patella tendon with scar tissue, which will pull on the tendon as you walk. The fat pad can also attached to the tibia, but you know this because you've had AIR surgery before. If you haven't had an MRI in a while that might help understand what is going on, but then there is still the decision to be made about surgery, which is a difficult decision.

My knee is OK thanks, it's manageable so long as I do twice daily CPM and take the TNF-a antibody injections, which are prescribed for anther condition. I delayed my last injection because of a spider bite and infection, and the knee pain came back big time to remind me how much the injections are helping.
Kay
Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey on November 10, 2017, 06:00:35 PM
Hi Kay,

As you know with the knee problems you endured over the years it becomes frustrating when you want to keep yourself occupied physically outside and restricted in how much you are able to do. I am able to do straight leg raises lying on my back with ease no limitations with my left knee. I am not able to do this with my right and will explain in my terms which I think makes it easy to picture. With leg flat on floor at 6 o'clock position fully raised reach 12 o'clock with leg raised straight up. My right knee when I reach 9 o'clock start to feel pressure and discomfort and can reach 10 o'clock with strain and pressure behind the hamstrings my limit cannot go any further passed 10 o'clock. Hope it makes sense just thought it up as a way to explain the angles of my leg raises. 

My fat pad has always been an issue since the start of my knee problems before my 1st scope that was trimmed rather then resection of the fat pad that might be a good idea as it was not done during scope #2 with a positive fat pad impingement test during my last consultation in July. Not sure if the fat pad can grow back that can happen after medial plica excision that was done during scope #1.

I am curious to know what going on inside the knee and would always play on the back of my mind if I did not opt for surgery. My walking pace cannot get any worse than it is right now, if the knee remains unchanged I will be satisfied and content knowing I did all I could to get it back to some normality. The key factor why I feel positive and optimistic post-op is how well my knee felt and was doing well recovering until the fateful aggressive physio session 6 week post-op that ruined the surgery with knee giving out several times with intense pain.

I waited for a while to get to this stage after doing all the safe conservative methods of treatment that all failed with surgery as the only option left. A diagnostic arthroscopy is a good diagnoses tool, I am not a big fan of MRI scan images when it comes to soft tissue problems in the knee clouding the images.

[email protected]
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl on November 12, 2017, 11:36:39 AM
Hi Clarkey,
Yes, the fat pad scar tissue can grow back, and it will hurt when it gets trapped in the joint or put under pressure because there are lots of nerves in it. Trimming is the best surgical option, as total removal of the fat pad is associated with poor outcomes.

The pressure and pain behind the hamstrings suggests that there are other problems in the knee as well.

MRIs are great for diagnosing soft tissue problems, but rely on a good radiologist to report what is shown accurately. And of course they are expensive, and don't fix the problem, which surgery has the potential to do.

Kay

Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey on November 13, 2017, 11:48:42 AM
Hi Kay,

Thanks for the reply and advice, I have read up that having the fat pad removed totally can do more harm than good so close to the nerve endings. It's faster and easier to go for my scheduled scope #3 that hopefully will be in the 2nd week in January 2018. An MRI scan would have to wait 6 to 8 weeks then a further 6 weeks for the results that would go into the northern hemisphere spring equinox.

The pressure behind the knee came on recently that is a good sign that the right knee is not happy with a higher success that something else might be found during surgery that hopefully can be fixed or eased. It is make or break and happy to take a gamble and risk at this stage! Fully aware of the dangers and risks involved when signing the consent form that safeguards the OS if the knee becomes worse rather than better post-op.

Going to the book chapter writing workshop and conference next week Monday in Galway. Birmingham Airport is fairly large so will get overtaken several times. I can drive to close to the terminal where a chauffeur parks up your car and meets you again when you arrive back again. Less walking and use of public transport is always good if you going to be on your feet a lot while traveling. 

[email protected]

Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl on November 14, 2017, 01:41:54 PM
Hi Clarkey,
That's good that you have a plan for the surgery, all the best with it. At least you're very well informed!

That's a long time to wait for an MRI result. I get my reports 2 days after the scan, but I have to go there to pick them up. The film takes a few more days to have in hand, but that's all.

Have fun with the writing workshop!
Kay
Title: Re: Your experiences of arthrofibrosis
Post by: Betematty on November 26, 2017, 10:10:37 AM
Hi Clarkey
I saw you are in the uk and as I’m not a million miles away I wondered if u could give me some advice.  I ruptured my ACL in 2014, had the broken acl removed in Jan 2015 and rehabbed we left with a stiff knee then had my ACL reconstructed in Feb 2016 but again have been left with a stiff knee.  I can’t get full extension and still walk with a limp.  I have had X-ray & MRI which shows nothing.  My knee gets really cold and other times really hot and it is effecting my hips and lower back as my hips ache and I keep putting my back out.  My consultant wants to go for an extension brace although 21 months post op, do you have any thoughts or ideas ??

Also I suffer from IBS and have had a very stressful period over the last few years.
Thanks in advance
Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey on November 30, 2017, 09:34:27 PM
Hi Betematty,

I have never sustained a ACL tear with my ongoing right knee injury problems without any reconstruction surgery as all my ligament were intact. The only thing that springs to my mind is knee bursitis fluid build up of the bursa maybe from scar tissue building up. Nerve problems with the cold and hot variations in temperature is another possibility. Scar tissue build up can occur from numerous amounts of surgery putting extra strain onto the other joints and from limping. Have you had a gait analysis done by a experienced physiotherapist. Tightness in the muscles can restrict extension of the knee. My ROM and stiffness improved after 3 sessions of dry needling needling, intramuscular stimulation (IMS) sessions after my first scope in my right knee. Someone might be able to advise you further that has also been through ACL reconstruction surgery.

[email protected]
Title: Re: Your experiences of arthrofibrosis
Post by: lilbit on January 08, 2018, 02:00:06 AM
Hi there Dogface Girl,
Thank you for taking on this summary of experiences.  I have copied the questions into my email, and will work on answering them - have to run to take care of an elderly mother.  The last part of the journey is the hardest!
I too have a "bad knee" experience - 80 degrees flexion and full of arthrofibrosis.  The surgeon's response when I asked about amputation was, "It shouldn't hurt that much."
I have been following your posts about resolvins and inflammation - had been using Advil - no more! 
I have lost that thread but will look for it again.
Your posts are giving me lots of information, and even some hope!!   I live in Canada, and am considering Anakinra.
In the meantime, I'm trying out Castor Oil at night.  LOL!!  Aren't we desperate? 
All the best to you, and thank you again.  I am on a steep learning curve here.
Lilbit
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl on January 08, 2018, 01:36:56 PM
Hi Lilbit,
Thanks so much for your post, its nice to know that I'm giving helpful information! Have a look at my recent posts on "Observations on arthrofibrosis", if you haven't already.

It sounds like you have had a tough time of it, and yes, we do get desperate. Surgeons that don't understand make things even more difficult. I look forward to your response to my questions, but there is no rush. It's great that your are taking care of your elderly mother  :)

All the best,
Kay
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl on February 08, 2018, 10:59:57 PM
All the very best Clarkey!!

Kay
Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey on February 10, 2018, 12:06:12 PM
All the very best Clarkey!!

Kay

Thanks Kay for checking in to see how I am getting on after my 3rd scope last month. I am sure you have seen my post op diary already since my surgery. Had my 2nd AIR and patella decompression surgery that no big surprise with all the scar tissue accumulation. My suspicions of having a meniscus tear was also right that might have been why I had an increase of effusion that was the deciding factor to go in again or would have been told nothing more can be done. Glad I took the risk and gamble, always knew there was more to it than just chronic patella tendonitis.

How is your knee problems going any changes or have it remained the same as it was towards the back end of 2017? Is your research into arthrofibrosis still going strong after your pet bereavement that is hard to accept, pets are very much part of the family. Hopefully, 2018 will be more promising and happier year for you happy late New Year, better late than never.

[email protected]
Title: Re: Your experiences of arthrofibrosis
Post by: Betematty on February 20, 2018, 10:25:13 AM
Hi

Was wondering how people got the diagnosis of Arthrofibrosis was it through MRI or with them going in and seeing it ?

Thanks

Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl on February 20, 2018, 01:35:52 PM
Hi Betemmatty,
My diagnosis was based on symptoms (poor ROM and pain), because I have artificial knees and MRIs don't work all that well with metal. I think that for many people the diagnosis is based on symptoms, but may be confirmed with either an MRI or by arthroscopy to lyse the scar tissue.

By the way, for others reading this, if you would like to contribute your responses to my earlier questions about your experiences, then soon would be good  :) The first draft of the paper is close to being ready.

I'm very pleased to hear that you're going well Clarkey!!

Kay

Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey on February 22, 2018, 09:00:20 PM
Hi Betemmatty,

My ROM was not that bad felt pain anterior knee pain and pressure, my MRI scans did not show the arthrofibrosis with effusion spotted in my MRI pre-op to scope #3. Mine was discovered when I had my last 2 surgeries for other procedures ended up having anterior release surgery where scar tissue had built up from overusing the knee too much in the early stages of recovery to scope#1 and 2.

Kay, going well so far just cannot tell yet how the right knee is until I have my knee brace taken off on Tuesday and no longer using the crutches.

[email protected]
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl on February 24, 2018, 08:58:26 AM
All the best for Tuesday Clarkey!!

I have finished the first draft of the review paper on arthrofibrosis, and KNEEguru has very kindly provided some images to use in it, they look great! Writing it has been quite an amazing journey. It often takes papers about 6 months to get through the official peer review process and come out in print, unfortunately, but hopefully I will be able to share it before too much longer.

Kay
Title: Re: Your experiences of arthrofibrosis
Post by: Clarkey on February 26, 2018, 09:44:10 PM
Thanks, Kay

Be glad to see the back of the knee brace tomorrow afternoon, just hope the scar tissue has not built up too much with lack of movement in the knee with ROM set at 90 degrees. I think you mentioned that doing raised leg lifts can do more harm than good. I only do 12 lifts before getting out of bed reluctant to do anymore the weight of the knee brace causes anterior knee pain around the 3 main portals. Not being able to do friction massage therapy and patella mobilisation that I was told to do after scope #2 AIR. The 3rd scope had a lot more done to the knee with limited PT sessions. Cutting out on sugar in my tea and coffee that should help as well reduce scar tissue building up to high.

All the best for Tuesday Clarkey!!

I have finished the first draft of the review paper on arthrofibrosis, and KNEEguru has very kindly provided some images to use in it, they look great! Writing it has been quite an amazing journey. It often takes papers about 6 months to get through the official peer review process and come out in print, unfortunately, but hopefully I will be able to share it before too much longer.

Kay

Congratulations, completing your first review draft paper on arthrofibrosis, can always rely on Sheila vast knowledge and experience towards knee problems with her images making it more appealing than just plain writing. My book chapter now completed can relax until the book launch in October 2018. It feels great to achieve something academically useful for the readers that we have both accomplished.

[email protected]
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl on February 27, 2018, 09:19:47 AM
Thanks Clarkey, and congrats to you too for your book chapter!

How is the knee going post brace? Yes, straight leg lifts caused severe inflammation of my patellar tendon and it shortened by 1/3, so be careful. If it hurts, I think it is wise to back off, and see if fewer lifts are OK.

Kay
Title: Re: Your experiences of arthrofibrosis
Post by: wizardoz1 on April 15, 2018, 07:39:25 PM
I need some serious help.

What can someone do rehab wise with major scar tissue development

I had TKR on March 12th and already had a manipulation on March 30.

Another Manipulation scheduled for April 22.

Normal PT isn't working and very painful.

Don't know where to turn but my extension is +35 and flexion is 70.

Afraid I will never walk normally again.

Please advise

Chris
Title: Re: Your experiences of arthrofibrosis
Post by: DogfacedGirl on April 28, 2018, 04:24:40 PM
Hi Chris,
I'm sorry to hear you're having so much trouble, I know how hard it is. I can't offer much advise except to try and keep inflammation as low as possible. When I was faced with a similar situation I bought my own CPM and stayed on it all day and sometimes all night, and I did succeed in restoring functional bend in one knee. The other suffered another minor injury and that set off the inflammation again, so it now has active arthrofibrosis. But I know this approach might not be possible for you.

If you can, see a rheumatologist to get better control over inflammation, that is very important. And you should know that any further injury even from surgery or MUA can make things worse, not better. Nobody can predict the outcome. Exercise helps but needs to be carefully controlled so you don't get more inflammation from it.
 
I'm currently overseas with very sporadic access to the internet, and have to go now.

All the best,
Kay