Author Topic: Arthrofibrosis, Inflammation, and Undiagnosed Pain? Help!  (Read 435 times)

Offline wyeth

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Arthrofibrosis, Inflammation, and Undiagnosed Pain? 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: June 12, 2017, 05:54:52 PM by wyeth »

Offline Aly0108

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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

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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

Offline Aly0108

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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

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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: PFS, P.T, maltracking & arthrofibrosis
Scope #3 scheduled October 2017
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-hip 04/04/17 R-knee 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline wyeth

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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

Offline Clarkey

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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: PFS, P.T, maltracking & arthrofibrosis
Scope #3 scheduled October 2017
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-hip 04/04/17 R-knee 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

 

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