MUA My new left knee-has Athrofibrosis, what now?

[eaglemom]

Personally I think that is very good news. I know it don't give you any answers, but in reality it does. It tells us the knee is stable and the hardware looks good. I know how frustrating and tiring it can be trying to find answers for a knee that just isn't cooperating. I also have one.

Sometimes I think our knees just have minds of their own and do their own thing. That's the only explanation I can come up with to at least make me feel better. Ever so slowly hopefully the swelling will go down and you will feel better about the surgery. I am sorry you’re going through this. Its a good thing you’re checking everything out, making sure everything is fine.

 

[Cinders2023]

Oh @eaglemom your right knee has really been through a lot. I agree that sometimes our knees do have a mind of their own. I see your last revision was almost 4 years ago, did you finally get a knee you can live with?

 

[Jammy]

@Cinders2023, I am reading your posts and feel for you. I'm flattered that you are quoting me but wish it wasn't so! Did you take gabapentin? Wondering what you thought--did it help the achy tingles? Since some people are talking about songs here--I am thinking of Huey Lewis's song, "I Want a New Drug." Ha. My song for you from me was written by Carole King: "You've Got a Friend."

 

[JusticeRider]

@Cinders2023 I hope you are able to get some answers. I think of both you and @Jammy often, with your slow recoveries. I have nothing but sympathy for you and feel your frustration. I only hope that, as slow as my recovery was, yours is just slower still and relief is on its way.

 

[Cinders2023]

@Jammy yes I still take gabapentin every evening. I know some people have mentioned side effects, but it does help me with the tingles and burning that I get when I don take it. I also use a tens unit just about every day. If you haven’t tried that yet, I recommend it. I got mine off Amazon a couple of years ago to try on my feet for plantar fasciitis, so I already had it on hand after TKR.

ps: I used to love Huey Lewis back in the day! I want a new drug is a great song.

 

[Cinders2023]

Well my bloodwork came back with elevated sed rate and c reactive protein, so the sports dr. won‘t even consider a procedure until we stick a needle in there and rule out infection. So I am now waiting for my OS office to schedule this repeat of labs that I had done in April. Both docs seem to think that the likely culprit of pain and swelling is infection. Now I am wishing I had just let him tap the knee when I was there last week.

Not the answer I was hoping for.
I figured 8 months out from surgery and testing at the 3 month mark I was out of danger for infection in the joint. I guess we will see.

 

[sistersinhim]

I am sorry you are going through this. Hopefully, it's not an infection.

 

[JusticeRider]

Oh my goodness, I am so sorry. That is scary and I hope they can test it soon so you will know either way. It would be awful if you had an infection in there, but I guess at least you would have an answer? I’ll be thinking of you.

 

[Cinders2023]

CT scan shows no acute fracture or deformity. Alignment is anatomical, no prosthetic loosening. No visible soft tissue swelling.

I talked with OS yesterday and set to do the aspiration 10/2. If no infection, i can move forward with arthroscopic loa. I am hoping for mid December for the procedure. Even though success for this procedure isn’t guaranteed, I do feel like it’s my best chance for any kind of normal life. I am so ready to feel better.

 

[benne68]

@Cinders2023 Sounds like positive news from the scan. Let's hope the aspiration reveals nothing so you can schedule the LOA. Please keep us posted.

Sending hugs.

 

[Cinders2023]

I had my aspiration a week ago. He was only able to get a small amount of fluid out, as the swelling is finally starting to go down. With the reduced swelling, the pain is a little better too. It only took 9 months. My biggest issue still is the stiffness, and low ROM.

I had a telephone visit with my OS and they are waiting on one last test, but so far everything is negative for infection. We have another telephone visit in a week and hopefully the last test result will be in.
if I am negative for infection, I can schedule a face to face appointment with the surgeon who I am considering for the arthroscopic LOA.

For the mods: how many LOA procedures / procedures per year would you consider for a knowledgable candidate to do this on a TKR patient? Typical success rate for this procedure? Anything else I should ask?

I know this is kind of a Hail Mary surgery and is not always successful. I want to be able to ask questions that will help me evaluate the risk/benefit with this surgeon. Because I am with Kaiser, I will have limited choices in who I can see. He looks great in his bio, but I want to ask questions that will help me decide if he has the level of skill I am comfortable with.

I am excited at the possibility of actually getting better!

 

[eaglemom]

Cinders2023 you ask me if I finally had a knee I could life with. I've not answered because I didn't want to discourage you in any way. Can I live with it? Yea, do I like it, nope. It is still swollen and very stiff. My ROM on a good day is 95, which certainly isn't ideal. I just plug along & do what I can do and mumble under my breath at what I can't! Steps are the biggest issue, as you can imagine. I have to do one at a time & even then I'm painfully slow. It's alright though, I just really need to get with the program and start very slowly walking.

As for your LOA I'd ask how many of those procedures he does in a month / year? What would he (surgeon) consider a success rate & what's his success rate? I'd definitely want details on recovery - the do's & don'ts. I'd also ask about icing & elevation - you need to be totally prepared on every level for the procedure.

Let us know how you are doing.

 

[Cinders2023]

@eaglemom thank you for your candor. I appreciate that I belong to a club nobody wants to be in. I’d rather hear the real deal than to have it sugar coated and be disappointed with what reality brings me.

Even before my knee was replaced I had to do steps one step at a time going down (30+ years now). So I know how you feel. It is frustrating when people are waiting on me, but I know that’s just how it might be from now on. I can go up foot over foot, but don’t get much practice in my daily life so I’m not as strong as I’d like to be.

For the LOA surgeon, how many a month/year would be considered a good number to have him say? How often would he need to do this for me to consider him skilled in the procedure? Any other BS staff have an opinion on this? I would rather not do surgery than do it with someone who doesn’t have considerable experience with the procedure on an artificial knee.

 

[Pumpkin]

@Cinders2023
Finding the right surgeon can be a challenge, consider seeking a Fellowship trained surgeon who specializes in knee replacement and complex joint reconstruction. LOA is not as common as TKR, so 25 to 50 a year may be a good number for a surgeon.

Would you like your thread title changed to something identifying arthrofibrosis.LOA to bring your thread to the attention of other members facing arthrofibrosis/LOA?

@WFD and @hhilltop both have arthrofibrosis.

 

[Cinders2023]

@Pumpkin, yes please change my title to ”my new left knee-has Athrofibrosis, what now?

Thank you for the input on number of procedures for the surgeon to be considered experienced for this procedure. I am insured with Kaiser Permanente and cannot go to a surgeon outside of network with covering the cost entirely. If I cannot find a surgeon “in network” that I feel is experienced enough to trust to do this, I plan to wait until I can change to a PPO insurance plan.

I am still limited on ROM, but continuing pain is my main concern. However, I am seriously worried that doing the LOA could generate more adhesions and I could come away worse than I am now by letting someone who has limited experience with doing LOA on an artificial knee joint. I am trying to make the best decision for an outcome I can live with.

Thank you to anyone who can give me advice that has been through this.
@WFD @hhilltop ?

 

[Pumpkin]

@cinters2023,
Your thread title has been updated.
Members in the past have been very mindful after LOA and take a few weeks to let their knee heal, avoiding further inflammation to avoid arthrofibrosis developing again.

Have you been looking at PPO plans for surgeons in their networks so you can choose one that has your surgeons with LOA experience ?

 

[Cinders2023]

@Pumpkin I am planning to set aside about 8-12 weeks of rest and healing before having to watch my grandkids again. Then it should only be about 4 hrs 2 days a week.
I have attached the bio for the sports surgeon I was referred to. I started to look for someone in Southern California to request an out of network referral to and of course they want me to see a Kaiser dr. first, so I stopped looking. I figured it would be better to exhaust resources in network before looking elsewhere. I have my consultation on Nov 8th.

 

[Cinders2023]

Yesterday I met with the sports surgeon to discuss doing an arthroscopic lysis of adhesions. After discussion and evaluation he said he felt the procedure would be beneficial in reducing the stiffness and gaining some ROM. I was estimated to be 5/100 at this visit. This is where is figured I was doing my best at home measurement. However he was booking surgery 4+ months from now. I was hoping to do it next month when I was able to take a break from watching my grand babies while my son is on winter break from college classes. Dr. Suggested a referral to a college he had personally trained, who is still a fellow. This doc finished med school in 2017. Not sure how I feel about someone less experienced, but I have an appointment to meet him next week and get a personal feel for him.

dr. I met with appeared confident, but not arrogant. Easy to talk with, but somewhat dismissive of my concern about difference between experience doing this LOA on a natural knee vs artificial knee. Said he had done about 300, but only sees maybe 3 a year. Math doesn’t make sense, but probably does less often now because he’s also head of the sports surgery department now?
Last issue I had was he recommended aggressive PT following procedure. if I have this procedure, I am leaning toward doing it the way I want to, not how the surgeon wants to.

I am looking for input from anyone who has had arthroscopic LOA. My case isn’t as bad as some others i have seen. But I am taking it seriously. I am hoping for improvement in my quality of life, but don’t want to risk having an outcome worse than what I am living with. If I can’t do this surgery next month, my next opportunity for taking time off to recover would be June. i feel like I have stopped going backwards on ROM, but no improvement since July.
Thanks for listening.

 

[sistersinhim]

When I did a search of LOA from our members, this is what I came up with: https://bonesmart.org/forum/search/?q=LOA&o=relevance

I think I would look for more opinions. This doctor sounds like he's 'blowing off' your concerns. You have time to search out others that you would feel more positive about.

 

[Cinders2023]

Well it’s been a while, i was asked by another member in a pm for an update and figured I’d share with all. Maybe it will help someone else experiencing the same nightmare.

I met with another sports medicine surgeon and agreed to do an arthroscopic lysis of adhesions with MUA. He is training with the dr I met with previously. Although he had not performed this surgery on an artificial knee as many times as I had hoped, he was straightforward and listened to my “not so normal” experience so far and we agreed to take this on as a team. He rearranged his schedule to get me in before end of year and surgery took place on December 13.

My TKR surgeon assisted in the procedure by doing the MUA portion. I felt good that he was still following my case, and not just passing my problem off to someone else. It was a pleasant surprise to me when he showed up pre-surgery to say hi. I had general anesthesia and a nerve block. My ROM under anesthesia was 12-98 before they began. They cleaned the medial and lateral gutters, and the scarring that was tethering the fat pad and patella to the polyethylene spacer. This was probably the cause of most of my pain and swelling. Every step I took pulled my patella into an unnatural motion. After surgery they were able to achieve ROM of 3-115.

I was administered a medrol pack (steroids) to combat the inflammatory response my body had the last time I had surgery. This is not a common practice as is puts me at risk of infection, but we discussed the risk/benefit and went ahead with it. The first week of recovery was much more tolerable than I expected. The steroids helped keep swelling down and proper pain management helped me keep moving.

I tried to stay off my feet except for necessary needs and have a CPM machine for 3 weeks. By the end of 1 week I only used a cane outside. I am now 16 days post surgery and my PT says I can go on a 5 minute walk daily if I don’t have swelling after. Both Dr. And PT have cautioned me to not try to do too much. Gentle stretches and listen to my body.

I still have some stiffness and mild swelling, but it’s still early. I already feel better than I did before the LOA. Dr. says I will not likely get any better than 115 for my flexion because that was all they could get the day of surgery. I have made peace with never having the flex I had before my TKR (130). I will be happy if I can walk without a limp and pain free. I am currently getting up to 105-110 of flex on the CPM. My PT only measured me at intake and I was 5-100 without any pushing on me. Kind of a relief we don’t measure every time. My Dr doesn’t really care about measurements either, what he’s interested in is function. Me too!