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Author Topic: Discouraged and frustrated  (Read 74 times)

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Offline Wildgoat3

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Discouraged and frustrated
« on: July 31, 2022, 04:38:39 PM »
I wish I was coming back to this forum with a positive update but I guess I need a place to say just how frustrated I am and how tired I am of dealing with this condition. Since I last posted a couple of months ago - and got some great suggestions and help - I have been trying to find a OS who is both knowledgable about Arthrofibrosis and a skilled Arthroscopist, within my health plan, to take over my care and to do the LOA procedure.

Brief history and symptoms:
TKA on 11/30/21, think OS did an fine job and that there is no problem with the installation of the hardware. MUA 3/15/22, was able to get a 0-130 range but as before the MUA, am at about 10 - 105 degrees. Aspiration of joint and quality testing of fluid ruled out infection. MRI, though not of great quality does indicate considerable scarring around Anterior Interval and probable Hoffa's Fat Pad involvement. Area of the Supra Patella Pouch feels bound down and OS thinks there is scarring through out the joint capsule. Patella is almost completely immobile. I do not have any sharp pain so I don't think there is any impingement of the Hoffa's. I am unable to be on my feet more than about 15 minutes without it starting to stiffen and become more painful - if it were not for this, I could maybe make do with the lack of ROM though longterm this would not be good for my body. It does become more hot, though I no longer have any noticeable swelling.

The other problem is that my left knee has terrible Arthritis - the plan had been to do it after I recovered from the right TKA - and it actually has less extension and a lot more sharp pain, so I really hobble around and overall am unable to do any of the things I love anymore. I can't fathom ever having it done . . . .

I have had a plant-based anti-inflammatory diet for years, I have been doing intermittent/time restricted fasting, I have added all supplements and aspirin, including increasing my EFA to 5 grams, that I have learned about here (thanks Kay!). I elevate, I ice, I think I am doing everything that can be done to approach this systemically.

Long story short, with weeks-long waits in between, referrals either fell through or, in the visit I had last week, the OS stated he thought it was a terrible idea to have the procedure, that my odds of getting worse were much higher than of getting any better. I waited two months to see this guy. He also stated he had only done the procedure on a TKA once before, that he thought I should have another MUA instead, even though I am now 8 months out from TKA so I don't place a lot of stock in what he says.

I know damn well that there is a possibility that I could be made worse by the LOA but what is so frustrating is that the 3 other OS I have talked to, one of whom is one of the experts mentioned on this forum, have stated they thought I had good odds of improvement in ROM (not to pre-TKA levels I know) and in reducing the inflammatory response because of the removal of pro-fibrotic tissue and advise I do the surgery.

The other area of complete frustration is that I have been unable to find any doctor who has any solid working knowledge around the use of any of the medications I have heard about on this forum - Anakinra, Metformin, Losartan of Simponi. Or the use of Cortisone or Prednisone in relation to surgery. While I get it that there is no medication yet approved for Arthrofibrosis, I am willing to be a guinea pig since it is a given that I will have more scarring following the LOA. At least I would like to find a doctor who knows more than I do (which would not take much) about any of these possibilities instead of looking at me like I'm talking gibberish. I could rant for 10 pages about the gender bias due to 95% of OS being men and the nature of Arthrofibrosis being an immune mediated condition much more common in women due to differences in our (superior!) immune systems. If Arthrofibrosis had the same prevalence rate in men, I think they would have put down their scalpels and started focusing on cellular biology years ago. But I digress.

I am just so discouraged and frustrated.

Offline DogfacedGirl

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Re: Discouraged and frustrated
« Reply #1 on: August 01, 2022, 02:22:49 AM »
Hi Myra,

I'm really sorry, and I share your frustrations at the lack of proper scientific studies and education in the medical community. All I can suggest is that you doctor shop for a rheumatologist who is willing to learn and work with you. RateMD or Doctoralia is a good way to find one that might be better than average. Please let us know if you do find one! Sharing good clinicians is something that I wish was done more often.

There is increasing evidence for metformin in treating fibrosis, although not curing, of course, and it's very safe for the vast majority. See "Metformin and Fibrosis: A Review of Existing Evidence and Mechanisms" https://www.hindawi.com/journals/jdr/2021/6673525/
Even a good GP should be willing to prescribe metformin given the evidence that it extends lifespan and healthspan. There is one group in Germany who now prescribe metformin post AF surgery, and they also prescribe no exercise for the affected leg early post op, so the message is starting to get out. AF patients really do need an advocacy group, with an education branch.

I'll PM you.

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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