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Offline Wildgoat3

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Question about the timing of LOA
« on: May 18, 2022, 03:19:43 PM »
I am wondering if anyone has any information about the ideal timing of having the Lysis of Adhesions procedure to address scar tissue. I had a total knee replacement in Dec of 2021, MUA in February of this year that gave minimal benefit, and the next step is the Lysis of Adhesions procedure. I have consulted with Dr. Eakin, one of the experts recommended here on Knee Guru and he advised to do the LOA anytime in the next 6 months. He did not make a big deal about the timing. My OS on the other hand wants me to wait stating that there is a reduced risk of recurrence of Arthrofibrosis if I wait until a year post initial procedure. I have read a lot of medical journal articles on Arthrofibrosis and LOA and have not seen anything that addresses this timing issue. Can anyone share any information on this, or on any other factors that I should consider in determining when to do the LOA? I am well aware of the probability of recurrence and have been studying the post-procedure rehab protocols on this forum to be prepared, as well as working with my OS, who does have experience with Arthrofibrosis, on a specific plan in relation to medications, CPM, use of wound drain, etc. My key question is should I wait? Thanks

Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #1 on: May 19, 2022, 02:56:57 AM »
Hi,
There isn't a lot of good science about the best timing for surgery, however, some studies suggest that surgery too close to a trauma (like MUA) might not be optimal since inflammation is very high already. However, you're likely past the immediate high inflammatory phase and I don't see any reason why you would wait for a year, other than to see if your symptoms improve over time.
Possibly the best advice when dealing with AF is to never try to "push through the pain", whether that is with exercise, CPM or anything else.
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 Wildgoat3

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Re: Question about the timing of LOA
« Reply #2 on: May 19, 2022, 06:16:06 AM »
Thanks for the input. Yes, I do not think I am in the high inflammation stage anymore but maybe you can share your thoughts on the following. I've thought a lot about the active phase of AF versus residual phase trying to figure out where I am. More than two months ago I quit doing all PT and PT exercises that caused pain and increased stiffness dramatically, and which I now know where completely wrong for my condition. With this I began to make some progress in ROM and in reduced stiffness but I feel like I have stalled out in making any real progress. I am still unable to do any significant resistance on the Exercycle, unable to be on my feet for more than an hour or two per day and many other things - standing is worse - without having increased heat, swelling and stiffness. Thank goodness my pain levels are not terrible anymore, and my knee does not heat up dramatically, but my knee responds to use, it is not neutral, so to speak. Would this indicate active AF or just be what it is like to live with AF? I have worried endlessly that my limited activity has been making my condition worse since my knee is happiest when I do absolutely nothing. But I'm guessing, again, this is just what it feels like to live with AF. I have thought that it might be a good idea to be as much of a couch potato for the month prior to the LOA to try and have my knee in the happiest state possible when I do the procedure. While I know 5.5 months post TKA is still not a long ways into the healing process for that procedure, I really do feel I have reached a plateau and question the value of working to increase ROM versus just doing the stretching and bodywork (ART Chiropractic) that maintains the gains I have made and go ahead and have the LOA. Sorry so much in this post and thank you for any input you have. I have gotten so much out of reading your responses to others - Thank You!

Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #3 on: May 19, 2022, 08:39:19 AM »
Thanks for the feedback, I appreciate it  :)
Your symptoms of pain with standing, reduced ROM etc are consistent with an inflamed Hoffa's Fat Pad that is protruding into places in the joint that it shouldn't and getting pinched when muscles are activated, although without an MRI it's not possible to know for sure. This could be why the knee feels better when you're not active, the pinching doesn't occur.
Since you're still relatively early post-op there is still the possibility that with care and more time, this inflammation could resolve but it's impossible to know unfortunately. Surgery will cause more inflammation in the Hoffa's, and cutting it back out of the joint typically leads to worse outcomes.
If your symptom stays the same, then yes, that is what it's like for people to live with AF, although some have more mobility and others less mobility and more pain depending on their particular situation.
I personally would wait longer and keep doing your passive stretching, and avoid doing steps and anything else that involves weight on a bent leg.
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 Wildgoat3

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Re: Question about the timing of LOA
« Reply #4 on: May 19, 2022, 03:38:58 PM »
Thanks for this input Kay and I hope that it is ok that I keep throwing questions your way. I actually did get a MRI and also a CT scan a while back. Of course with having the prosthesis, the images are less than ideal but here are the significant findings: From CT: "SOFT TISSUES: Minimal stranding of the prepatellar soft tissue with no definite CT findings to suggest a cyclops lesion or soft tissue mass in the Hoffa's fat pad.OTHER: Small suprapatellar effusion is identified" From the MRI: "Ill-defined, intermediate to decreased T1 and T2 signal within Hoffa's fat pad, as described, consistent with evolving postsurgical change. The signal characteristics are consistent with evolving scar tissue/fibrosis. Thickening, intermediate signal, and irregularity within the patellar tendon. It is unclear whether this represents normal evolving postsurgical change or greater than expected scarring of the patellar tendon."  So it would seem that Hoffa's fat pad is compromised to some degree. When I read others posts though, folks who are dealing with impingement of the fat pad, I have never had the degree of pain others describe. In addition, where I feel the most fullness and stiffness is typically in the region of the suprapatellar pouch and the medial and lateral compartments of the knee capsule, not in the region of the fat pad. I no longer do steps - something I had barely developed the ability to do - but I don't experience any significant at this time in the area below the patella when doing steps or at other times. I know the surgeon removed a portion of the fat pad in doing the replacement and the article on the IAA website has helped me understand the importance/vulnerability of this structure. I have understood that my limitation in ROM, (about 10 - 95) is typically best explained by scaring in the medial and lateral gutters, in the suprapatellar pouch, and the posterior region though these areas are not noted in the MRI or CT scan reports. Does this mean I do not have scaring in those regions? I'm hoping that much of my problem is NOT related to the fat pad since it seems that is much dicier to address and any feedback in this regards would be really appreciated. Anyway, kind of rambling here - it is so helpful for me to have a place to sort this out! Myra
 
 

Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #5 on: May 20, 2022, 03:13:42 AM »
Hi Myra,
That's good that you have had scans. It's possible that you have some amount of scaring in the medial and lateral gutters, and/or in the suprapatellar pouch that wasn't reported on, and the CT finding of "Small suprapatellar effusion" suggests something is going on there. CT (and X-ray) aren't so good at soft tissue imaging. And unfortunately, if it isn't specifically requested, things are sometimes missed in MRI reports because the radiologists are under a lot of time pressure in their jobs.
However, it's also possible that the fibrotic changes noted in the Hoffa's fat pad and patellar tendon could explain your lack of ROM, especially if you have patellar baja (shortening), which seems likely.
The Hoffa's is tethered to the patellar tendon, and stress on the tendon can increase stress and inflammation in the Hoffa's. This could explain the pain with standing, although there is likely a little pinching going on as well at the top of the Hoffa's. Since you had some of the Hoffa's removed during your TKR, this indicates that you already had some impingement and inflammation then, so it's not surprising that you still have some now. The fact that you don't feel sharp pain when you do steps etc is a good sign, I would take that as a positive.
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 Wildgoat3

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Re: Question about the timing of LOA
« Reply #6 on: May 20, 2022, 11:32:55 PM »
Thanks for the input Kay. You indicated that waiting a bit longer to do the Lysis, letting my knee further recover from the TKA, might be a good idea. I'm imagining it will be no sooner than August or September anyway since it will take some time for me to get prepared and set up for the recovery. My only lingering question about the timing is that I have heard that scar tissue gets tougher with time and thus doing the surgery sooner is better. Maybe this is not true or not simply not so important? - is that your thought?

My next step is deciding on who to have do the surgery. I have identified two potential Orthopedic Surgeons I hope to meet with in the next month or so, both of whom have experience with AF and LOA. I also have also not ruled out having Dr. Eakin do it though this would require private pay, or, possibly switching health coverage. Switching health coverage would mean I would have to wait until after the first of the year too so that is not ideal. Also, even though he stated he would do the surgery when I met with him, he does not typically work on TKA knees and I don't know how much I should factor that in. Anyway, I want to be prepared in terms of having a list of questions to ask them to assess for myself their competence. I read one of the articles you referenced in the Hoffa's Fat pad section of the IAA website, "Evaluation and Treatment of Disorders of the Infrapatellar Fat Pad" and this gave me some ideas about what to ask, as well as a deeper appreciation of the complexity of dealing with scaring around this region, but I'm wondering if you, or anyone else on the forum might give me some pointers on interviewing Orthopedic Surgeons to do the LOA procedure.

I know the surgery is just the first step and that the rehab after is as important. I know it would be ideal to work with someone who has a Physical Therapy department with PT's who know how to deal with AF, and if I can find that short of flying to Colorado, Texas or back East, that would be ideal.  But I am not counting on being able to find that. It seems there are literally three places in the United States that I could find that. I have been doing a lot of research, on this forum and elsewhere, in this regards and even though it is not ideal, I would rather develop my own rehab program, using the wisdom I have found on these pages, complete with needed equipment, and have no PT rather than inappropriate PT. While I know it is likely that I would still be dealing with AF anyway, the inappropriate PT I had, I think, made my condition considerably worse. Feel free to tell me this is unwise - I really do welcome all input, but particularly helpful would be suggestions on questions to ask to find the right surgeon. Thanks in advance. Myra

Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #7 on: May 22, 2022, 08:20:54 AM »
Hi Myra,
It's true that scar tissue becomes more cross-linked with time, however, I haven't seen anything that indicates cross-linked scar tissue is a problem for effective surgery. There may be an argument that the knee can recover better post op before the cross linking forms, but this is theoretical. As discussed, the main reason for waiting past the initial inflammatory stage would be to make sure that surgery is necessary.
Regarding who to have surgery with, I would certainly go with the most experienced surgeon you can access. Scar tissue inside a joint makes it difficult to see what is what, and surgeons who aren't experienced with how it deforms things can do damage. The main things I would be looking out for is a surgeon who prioritises minimising bleeding and keeping operation time to a minimum.
Questions: The use of shaver to cut out scar tissue will cause bleeding and the formation of more scar tissue, so ask the surgeon how scar tissue will be removed. I would look for somebody that uses a burning tool that stops bleeding.
I personally dislike MUAs, so I would ask if they will do an MUA during the surgery. Many will say yes. If they do, see if they emphasise care while doing an MUA, since MUAs can do a lot of damage especially for somebody with a prosthesis.
I have heard good things about Dr Singleton in Texas, and from what I know he seems to be very dedicated to his patients and provides ongoing care post op. He also works with PTs that are focused on treating people with arthrofibrosis.
However, I agree that doing your own rehab is a reasonable option, you have complete control over how far you push things, and you're well informed. I believe that the main focus for some months post op, probably quite a months, will be to keep inflammation at bay with icing and elevation. If you can buy an icing machine that would be beneficial.
All the best, and feel free to ask more question  :)
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 Wildgoat3

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Re: Question about the timing of LOA
« Reply #8 on: May 22, 2022, 03:47:31 PM »
Thanks so much Kay for pointers on assessing the next surgeon.

In terms of timing, sounds like if I am only able to access the most highly qualified surgeon by switching insurance, and thus waiting until after the first of the year (though that could turn into Feb/March/April with scheduling) that would be better than doing it sooner with a less qualified doctor.  I hate the idea of living like this for that much longer but . . . 

Both of the surgeons I am planning to meet with are Arthroscopy specialists with a sports medicine emphasis. I have yet to find an OS within my HMO who is a highly qualified Arthroscopist and regularly deals with TKA knees. They have extensive experience with AF, I imagine in relation to ACL repairs mostly. My surgeon, who did the TKA, thinks I would be better served by one of these docs and said that not being so familiar with the landscape of the prosthesis was not such a big deal. Any opinion? Your statement about the importance of minimizing the length of the surgery leaves me wondering if it would take one of these surgeons longer to do the procedure since they don't know the landscape so well. On the other hand, seems that there would be less vulnerable tissue to bump into!

I have seen mention of using a drain as a way to minimize blood and actually did have a drain after my TKA for two weeks. It seems I did not have any bleeding since there was never any discharge, but I'm aware that is a trigger for AF. Have you heard of a drain being used with the LOA?

I'm aware there are not established protocols around adjunctive medications but am hopeful one of these doctors will be aware of the possible use of some of the drugs I see mentioned here such as Metformin, various Corticosteroids, etc., I know with having an artificial knee there is a higher level of concern about infection but I worry that an overabundance of caution about that risk, in relation to the very real and probable threat of a systemic inflammatory response, might lead to them not using a drug that could be helpful. Unfortunately, this will be the fourth surgery on this knee and clearly, my knee knows how to "button down the hatches" when there is a perceived threat so if there is any medication that could mediate this process, I'm all in! This is a whole area I will probably have lots of questions about as the surgery get's closer.

I already have a plant-based, minimal red meat and dairy, low inflammation diet, though this was the case when I had the TKA. Have doubled my EFA, added Magnesium Citrate, started Avmacol/ Sulprhoaphane Glucosinolate.

Will bring up rehab questions at a later date. I do have an ice machine and plan on getting a programable CPM - hoping my insurance will cover that.

Thanks again - this is incredibly helpful!
Myra




Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #9 on: May 24, 2022, 10:09:21 AM »
Hi Myra,
I agree, I feel that possibly the most important aspect when planning surgery is to go with the surgeon who is known to be experienced in dealing with arthrofibrosis (instead of just claiming to be), and with operating around a prosthesis in very difficult conditions. There are a lot of crucial structures that can be damaged. Obviously, you would also choose a surgeon that you trust, and who treats you with respect.
Waiting is difficult I know, but if the outcome is better then the waiting time will seem very unimportant years down the track. My understanding is that a surgeon who uses a heated tool to remove the scar tissue during arthroscopic surgery shouldn't need to use a drain since bleeding will be minimal. To be frank, having a drain in for two weeks sounds like an unusually long time and increases the risk of infection. Have you have a synovial fluid test for infection since your last surgery?
I'm uncomfortable with suggesting particular surgeons, but I know that Dr Singleton is aware of new medications that might help prevent the return of arthrofibrosis. Your remark about balancing the risk of infection versus the risk of arthrofibrosis returning is a good one, and something that must be considered. I've had one surgeon remark to me that he will never inject corticosteroids post op into a knee with a prosthesis since in his experience it has resulted in an infection, and I take that advice very seriously. Infections on a prosthesis can be impossible to remove. Some people have had positive results using Anakinra, and there is another new player that may be entering this space.
It's terrific that you've read up and are doing everything possible to help your recovery!
I'm always happy to answer 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 Elce

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Re: Question about the timing of LOA
« Reply #10 on: May 25, 2022, 09:39:28 AM »
Hi Kay, I have very bad and swollen fat pad on my right knee possibly with scar tissue made much worst after surgery! I am told by mu current OS ( who did not the surgery ) another surgery is not solution but physio. Another OS told me try physio and if it does not work he will do arthroscopy but he does admit some people still have pain after surgery. So far physio it has not worked and I am in constant pain. I am told I need to build muscle but the exercises give me pain.
There is a  surgeon who claims to have high success with shaving the fat pad. The procedure is around 10 minutes. Another surgeon says he shaves the fat pad and removes any scar tissue with burning tool. They only work privately so one would expect they will claim that.
Can fat pad surgery be successful ? If the fat pad is badly inflamed can it settle down with rest? 
My question is should I wait be patient and see if it settles down? Thanks

Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #11 on: May 28, 2022, 09:51:02 AM »
Hi Elce,
Sorry for the slow reply, I missed seeing your message.
Yes, I would certainly wait to see if your fat pad settles down. In my opinion for this to happen you'll need to stop doing the physiotherapy, at least any of it that focuses on the affected leg (the rest of the body is fine). Building quads seems to be one of the worst things for fat pad inflammation, including straight leg lifts etc, since it stresses the patellar tendon and that Hoffa's Fat Pad that is associated with it, and causes more pinching between the bones and inflammation. You'll also need to keep off your feet as much as possible and avoid standing, if you find that standing increases pain.
Inflammation in the Hoffa's takes quite a few months to settle, so be patient and keep icing and elevating. Icing is a powerful anti-inflammatory treatment so do if often during the day, taking care not to burn yourself.
You might want to read this web page https://arthrofibrosis.info/the-ifp-hoffas-fat-pad/
If, later on, you believe that surgery is necessary then I would go with a surgeon experienced in treating AF and who uses a heated tool to remove scar tissue. The burning tool will help to reduce bleeding, and this is important since every surgery is an injury, and arthrofibrosis is a response to injury.
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 Elce

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Re: Question about the timing of LOA
« Reply #12 on: May 28, 2022, 07:23:53 PM »
Hi Kay , Thank you for your reply.
There are couple of surgeons in UK who claim high success for fat pad surgery! How true that is is difficult to verify!
Thanks again!

Offline Elce

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Re: Question about the timing of LOA
« Reply #13 on: May 28, 2022, 07:24:29 PM »
Hi Kay , Thank you for your reply.
There are couple of surgeons in UK who claim high success for fat pad surgery! How true that is is difficult to verify!
Thanks again!

Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #14 on: June 01, 2022, 02:40:01 PM »
Hi Myra and Elce,

I hope you're well. There is a new medication called pamrevlumab that has been developed specifically for fibrosis. It's only just gone through the FDA approval processes for lung fibrosis but I understand that the company that makes it will be making it more widely available for off-label use. It's a biologic, which means that it's antibody, so unlike most drugs, it shouldn't have off-target side effects such as interactions with other medications. It targets connective tissue growth factor which works with TGF-B to "make" fibrosis.

Dr Singleton in Texas is applying to trial pamrevlumab in patients with arthrofibrosis but there are some processes to go through before that can happen. Nobody knows how effective it will be, most likely it will vary between individuals depending on their biology, but it has been shown to be effective in lung fibrosis, which is very interesting.

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 Wildgoat3

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Re: Question about the timing of LOA
« Reply #15 on: June 02, 2022, 06:42:33 AM »
Thanks for the information on the new drug being trialed Kay. It certainly does seem that it is going to be breakthroughs in the area of medications that is going to have the potential to make a real difference with AF.

I have been trying to get a referral to see a Rheumatologist and getting some push back. Seems the Rheumatologists see AF as the territory of the Orthopedic doctors, even though it is a inflammatory condition, which makes no sense to me. We all know how interested a vast majority of OS are in AF! I swear my doctor looked at me cross-eyed when I brought up Losartan!

I thought of you Kay when I came across this recent study, that focuses on medications, some of which I have seen you bring up in posts: "Perioperative Use of Antifibrotic Medications Associated With Lower Rate of Manipulation After Primary TKA: An Analysis of 101,366 Patients". It found a reduced incidence of MUA in patients who had been on certain drugs known to have antifibrotic qualities. It came out in the Journal of Arthroplasty a couple of months ago.

I have been doing some research around Resolvins and SMP's, Specialized pro-resolving mediators. There are some supplements on the market, one by Designs for Health which I consider a good supplement producer. Anybody have any experience or opinions on the use of these? I'm up to 4 grams of Omega 3 now, as well as back to intermittent fasting, to approach this issue systemically.

Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #16 on: June 04, 2022, 03:16:50 AM »
Hi Myra,
Thanks for pointing out the new paper, it's an excellent study and I feel much more confident in suggesting the use of Losartan now!
Yes, it's a real shame that rheumatologists don't treat arthrofibrosis, and many don't even know it exists, or they think it's just some mechanical problem. I think that until this changes, there won't be significant improvements in how people are treated. But I don't know how this change can be made - maybe one by one as patients educate rheumatologists, when they find somebody that will work with them and is prepared to learn. Or perhaps we can find the ultimate "influencer" among rheumatologists to do this  :)
Your energy and commitment are impressive! Regarding fish oil, I like to check any supplement on ConsumerLab's website. They're an independent lab that uses subscriber payments to fund their analyses of supplements. They don't seem to have tested Designs for Health omega 3, but they found that, among the high strength capsules, Spring Valley Maximum Care Omega-3 2000 mg was the lowest costs/unit of DHA+EPA. Then came Solgar Triple Strength Omega 3 950 mg and Nature Made Fish Oil 1,400 mg. On the negative side, they found that the batch of Viva Naturals Antarctic Krill Oil they tested contained arsenic and the batch of Freshfield Vegan Omega-3 DHA + DPA contained only half the claimed amounts.
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 Wildgoat3

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Re: Question about the timing of LOA
« Reply #17 on: June 05, 2022, 04:27:07 PM »
Thanks Kay.

Thanks for reminding me about Consumer Lab - I used to subscribe to them years ago but had forgotten about them. I'm curious if you see any value in a supplement that isolates out the resolvins (assuming they are legit in their claims off course) or do you think just taking the Omega 3's and letting our body do the rest is just fine.

I am beyond frustrated with my referral to Rheumatology not being accepted. I also thought I was going to be able to work with an OS in another region, but within my health plan, who I had high hopes for being much more qualified for doing the LOS I know I need, but it looks like that is probably falling through.

I alternate between "energy and commitment" and utter despair. There are many hours on my dark days where all I do is lie on my couch and cry. Today is one of those days. Almost everything in life that brings me joy, is physical. I can no longer hike, no longer trail ride or take my mule on long riding vacations around California, no longer garden, no longer tend my 20 fruit trees - the list goes on and on. I will have to sell this beautiful 10 acres that I have poured my soul into for 35 years if I cannot get this knee fixed. I am devastated by the loss. So I research, and learn, and fight with my health care system, and try to decide what to do next. 




Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #18 on: June 06, 2022, 02:38:08 AM »
Hi Myra,

Hang in there, I think we've all been where you are. All of the things you say ring true for me too, but thankfully I'm past the depression stage now. It seems to me that the most physically active people are more likely to get arthrofibrosis, it's like a cruel joke. Maybe we all push too hard to do the post op PT and the things we love.

I know I've said all this before, and some of it might not be possible, but to sum it up, if I were you I would try to get a trial of a TNF-a antibody like Simponi, to see if it helps. It helps some people and gives them a lot more mobility, and it also helps prevent depression since the main cause of depression is inflammation (read "The Inflamed Brain").

You're already eating a high fibre and low sugar/processed carbs diet and doing intermittent fasting and omega 3's (and no, I don't thing the extra expense of the more highly purified ones are worth it), try adding low dose aspirin if your medical condition permits.

The other things that should help are daily sunbathing to get the near infra-red radiation, this is a powerful thing. But make sure you don't burn, or you'll get increased inflammation instead of decreased. You can wear sunblock and light clothing, the NIR will go through them.
 
Also, hypothermia and hyperthermia decrease inflammation. Build up with these slowly, and don't do them if you have a heart condition. I swim at a local pool for the hypothermia because it's winter here and the pool is really cold, but I have to do a highly modified stroke with minimal kicking and fins on so I don't upset my Hoffa's Fat Pad. Of course, an ice pack on a knee is isolated hypothermia, and that works well too.

For hyperthermia I do a very hot bath 2 days out of every 3. I have an indoor/outdoor thermometer and I drop the outdoor part into the bath to track the temperature. The research says that 39 to 42 oC for 20 minutes or more has the best outcomes. As mentioned, build up slowly (over weeks) because your body takes time to adapt, and sit for a while after the bath water is released because you don't want o black out from standing up too quickly. You might have access to a sauna which would be good. Also, don't immediately go from very hot to very cold, it is too much of a shock. Wait for 5 minutes or more.

There are a lot of complex biological pathways affected by the things mentioned above, but the science is sound and the outcome is lower inflammation. Our bodies are meant to be a little stressed in a physical sense and doing this is helpful. Exercise is another stressor that is beneficial, but of course, we need to avoid stressing our knees any more with exercise since they're already over-stressed. But you might be able to do upper body exercises at a gym, or swim with just your arms.

Keep pestering you doctor for another referral to a different rheumatologist. There are a couple of specialist review sites online, like WebMD and Doctoralia that I've used to find a good specialist in the past.

Try to meditate daily as well, it will take time to master but it also has powerful effects on inflammation. It stimulates the vagus nerve in the same way as the implanted electrical stimulators do, this is a relatively new treatment for inflammatory conditions like rheumatoid arthritis and maybe one day people with arthrofibrosis will be able to access it.

Take care,
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 Elce

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Re: Question about the timing of LOA
« Reply #19 on: June 07, 2022, 02:36:58 PM »
Hi Myra,
In my many searches on the internet for my knee issues I came across a story of USA doctor who developed arthofibrosis after tkr. He believes it happened as a result of his aggressive pt rehabilitation protocol post tkr. He stopped his pt and re started but a much more personalised pt therapy which he now advocates. He also wrote a book about that.
I have not been able to find the link to his story you may have better luck if you are interested to find out more.

Hi Kay, Thanks for posting information about the new drug being trialed for fibrosis. I just wish they speed up with approval of this new drugs that can people.

Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #20 on: June 09, 2022, 10:12:17 AM »
Hi Elce,

Yes, there is a huge unmet need for an effective treatment!

I think the doctor you're referring to is this one: https://www.oregonlive.com/health/2018/12/im-a-doctor-but-even-i-couldnt-explain-why-my-knee-wouldnt-heal.html

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 Elce

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Re: Question about the timing of LOA
« Reply #21 on: June 09, 2022, 10:48:05 AM »
Hi Kay,

Yes, that is the one.

Offline Wildgoat3

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Re: Question about the timing of LOA
« Reply #22 on: June 09, 2022, 02:31:54 PM »
Thanks Elce for referencing the story by the doctor - that was certainly my case as well that the PT was too aggressive following my knee replacement. That, combined with my first follow up with my OS was a TELEPHONE visit at six weeks, were key parts of the poor care that led me to where I am today.

Thanks Kay for the encouragement and suggestions. It makes perfect sense to me what you say about our bodies do better, as I think of it, under the conditions we evolved under; outdoors, periodic food insecurity, extremes of weather, etc. Traditions such as seat lodges and fasting have been a part of humanity for eons and not surprising to me that science is now "discovering the benefits" I don't think I can safely get in and out of my bathtub so maybe the is my medical justification to put in a hot tub!

How long do you suggest being in sunlight to get the benefit of the infra-red spectrum?

I am going to go to the gym this weekend and try swimming with a pull buoy. They also have one of those upper body exercycle machines so I can start trying cardio on that. I know I have been avoiding going back to the gym because it is another one of those things that reminds me of of who I used to be and no longer am. I used to work out 3-4 days a week doing serious cardio and weight training; I am a shell of who I used to be . . . I joke that muscle wasting and depression are a great weight loss formula. Hopefully I won't have to duck into a bathroom stall and cry for a while! Wish me luck.

Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #23 on: June 11, 2022, 05:25:38 AM »
Hi Myra,

Good luck with the gym!! I think that you'll feel quite a bit better for going after you move past the grieving.

Try to be out in the sun as much as possible with the necessary precautions against sunburn. As far as sunbathing itself, that varies a lot depending on latitude, the seasons, and skin type, but you probably know about how long you can sunbath for without burning. I always play it safe since burning is a really bad idea. In summer I only expose each side for 2 or 3 minutes, Australian sun in summer is fierce and I'm fair skinned. But in winter it's pretty much impossible to burn, so 20 minutes a side isn't too much.

I have my near infra-red panel now and since it's winter I'm using it each day on my knee, and I also do a 20 minute session on my back. I haven't used it for long enough yet to be sure of the effects, if any, but one unexpected side-effect seems to be that I'm sleeping much better. I'm sleeping right through the night since I started doing my back, and the NIR does stimulate melatonin production so there is a scientific reason why this might be a real effect. The NIR is not visible, and there is only a slight warmth.

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















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