TKR Turtle still hoping to cross the finish line

[maryo52]

Here are photos of my knee today. Dr. Freiberg at Mass. General told me I had laxity. Is that why my leg does what's in the first photo? It bends inward readily but not so much outward. The 2nd photo shows my knees taken from the right side; the 3rd photo are my knees taken from the left side showing the odd inward curve of my tibia coming into the knee.

When I was younger I had beautiful knees, and my left knee is still pretty nice looking, not that that matters a whole lot. But I don't understand the deformed appearance of my TKR knee and its bizarre bending inward. When straight it's in some valgus, I don't know how many degrees. But the way it is, hiking up an incline or coming down is tricky because my leg does not feel reliable. Plus there's pressure underneath the knee cap when I stand up or climb steps.

We are traveling to NYC for my stepson's graduation the end of May, and I managed to get an appointment with a revisionist there on May 30th.

Jo, what is your take on these photos?

 

[Jamie]

Mary, I'm tagging Jo so that she can comment on your photos. @Josephine:

I'm curious, though....why would you want to just live with things the way they are if a revision could straighten your knee out? It sounded like the surgeon you spoke with could fix your problem.

 

[maryo52]

Yeah, but . . . I went through months and months of hellish recovery. Risking a repeat (6 months of regular narcotics, the arthrofibrosis, etc.) makes me shake in my shoes. A year and a half of my life has already been taken up by this! I guess right now I need to figure out how bad it is, and if there's anything short of a total revision that can help me. It just takes so much time and thought and whatnot to sort things out.

 

[jancat]

Mary, Are you seeing someone at HSS? I would also get this additional opinion. Good luck.

 

[maryo52]

Jan, did you see my photos??!! I'm in "figuring it out" phase and on a bit of an emotional roller coaster. But anyhow, thanks for your encouragement. It did prompt me to follow up on an idea I already had. So I called them and asked for an appointment the last of May when I'll be in NYC anyhow for my stepson's graduation. Got in with Dr. Michael Parks. I was so shocked by what I was told at Mass. General that I didn't think of followup questions till much later.

 

[jancat]

Glad to hear you got an appointment at HSS. DId you see the list I made-Parks is on it for revisions. Is your knee always crooked or does it wobble? Make sure you get a disk with your most recent xrays on it. They'll prob. take new ones there but just in case. Good luck and keep us posted.

 

[PooShay]

Mary, your leg looks like mine pre-op! I'm glad to see you're going forward and looking for a permanent solution.

Hugs.

 

[maryo52]

Actually my knee valgus and bending inward tendency was there pre-op and now only a little better. Before it looked like my good knee with a little swelling but not much. Had to use arms to stand up and sit down before, am still needing to do so now. It's not like I'm suffering. It's just that for $77,000 (to the insurance company) and 18 months' tough recovery I'd like to have more to show for it.

 

[Greda]

I know this has to be so frustrating for you. I really hope that you are able to find someone who can you can trust and fix the issues you are having. I will keep you in my prayers.
Greda

 

[Josephine]

Jeepers, Mary - your medial ligaments are shot! I think (but don't know) that the odd configuration showing in the other two images are connected with that. I would imagine that you need one of those rotating hinge devices. I don't see how else this can be resolved to give you stability.

 

[jancat]

Jo, What do they do with ligaments during TKA? I know my ACL was torn, not sure about others. Do they matter after TKA? Do they remove them if damaged or leave them? What rotating hinge device are you recommending for Mary? An external brace?

 

[maryo52]

Why is it so hard to get someone to assess all aspects of my knee? At Mass. General I was told it was not a good knee technically, and I was so dumbstruck my mind went blank. They did not pay much attention to the soft tissue issues. I'm going to type out a long list of questions for the next doc.

 

[jancat]

Mary, if MAss Gen. took xrays- get a disk and copy of reports. HSS will prob. take a new set anyway-they have their own protocols, but it might help the new doc see what the last doc was thinking. Good luck!

 

[maryo52]

Well I have two thoughts about that. Yes I definitely will get a full set of records from MGH.

However, I want an opinion without the influence of someone else's opinion. Although I was asked over the phone what the MGH doc had said.

Jo, your observation really connected the dots for me. I immediately found a Medscape article "Surgical Challenges in Revision TKA" https://www.medscape.org/viewarticle/413058 that has a good discussion of instability issues. The author describes prosthetic designs appropriate for ligamentous deficiency. Mine is not severe but mild which according to him warrants conservative measures and possibly a brace. I am not necessarily determined to have a perfect knee so much as, at least for now, understanding what exactly is wrong. I think I will be better prepared to make the most of my upcoming appointment at HSS. By the way my prosthetic was designed there.

 

[maryo52]

As I read about the hinged rotating knee and MCLs "giving up the ghost" and whatnot, I have to wonder what happened to my MCL. Was it from my 10 degrees of valgus pre-op? Was it nicked during surgery? Wouldn't the surgeon recognize there was a problem intra-operatively, especially as he had to pay attention enough to sacrifice my PCL because the osteophytes had all but severed it. Oh well, I'm always looking for answers.

 

[maryo52]

Yesterday was my most knee-challenging day since TKR 18 months ago. I climbed Mt. Cadillac in Acadia National Park on the north face trail, 1100' of elevation rise on a trail 2.2 miles in each direction. Maine is littered with what's called glacial erratics (or just "erratics" for short) -- rocks and boulders, plus lots of ledge. So that means the trail is not simple but involves a lot of stepping up, down and around, a knee patient's nightmare. If you fall, it's on granite. My non-TKR knee was best for stepping up, and TKR knee for stepping down.

I am going for another opinion on my knee May 30 at the Hospital for Special Surgery. I have my list of questions typed up. Then I guess I will go back and meet with my OS. But so far it's looking like my knee is not great, but not bad enough to revise.

I have so enjoyed the support and advice on this forum. However, the forum has gotten busier since I joined. Between that and the fact that my thread is not familiar to many members, sometimes I get few or no responses. I feel alone grieving the fact that my knee has not turned out very good.

I wish the threads could be subdivided. There could be revision board, and an adhesion board, etc. I try to locate the folks who are discouraged due to poor ROM because I know what a nightmare that is . . . . but then again, over time, the focus of our threads change and no longer necessarily reflect the thread title. I know our moderators are aware of this.

 

[jancat]

Mary, I am so waiting to hear what Dr. Parks at HSS has to say! Then I know the conversation on this thread will pick up.
My family is planning our annual trip to Maine this summer and I am hoping that I will be able to hike Acadia. Last year my husb. and daughters did the Beehive while I was at the beach : ( waiting for them. I can't wait to try out my new knee and see how it holds up.
Can't wait for your visit to HSS!
Was your knee painful during the hike?

 

[maryo52]

Thanks, Jan. Yes I was stiff and painful. My TKR knee has been so consuming that the obvious problems in the other knee have gone completely ignored.

 

[jancat]

Mary, I am so sorry this is happening with your knee. (((HUGS)))
I know I might be a bit overzealous abt HSS, but I think they will be able to help you. Sorry if this is a repeat but I recently relayed this story twice abt a young man I did a bone scan on within the last 2 years. He had both knees and both hips replaced by Dr. Bostrum at HSS. He had never walked until those surgeries were done at age 19. He had either JA or RA- I can't recall, but he was there for an issue unrelated to his joint replacements. His story was remarkable and I'll never forget him.
As difficult as it is, try to keep a bright outlook. I am hoping for the very best for you!
As crazy as it sounds- I really think it will be good for you in the end!

 

[Minnie]

Hi Mary,

I was just catching up on your thread. Wow, what a horrible time you have had. I understand your grief for tkr not turning out well. I guess we are the 10% that have problems and I think the emotional pain of a failed knee replacement is very devastating. When I realized my knee would never get better and I knew I had to had a revision I was extremely upset. I still can't believe how long this whole process has been for me.

Sending out good vibes and hoping you find a revisionist you feel you trust.

Minnie