TKR Turtle still hoping to cross the finish line

[Dhare63]

HI Mary,

Thanks for the update. Sounds like the news wasn't great but at least you have answers. I understand your reluctance to go through any additional procedure at that point. I know with time, you will the deacon that is right for you. I will watch for updates and hope for the best!

Dawn

 

[jancat]

So glad you have the information that you need to make an informed decision.
If you do go ahead with the surgery- I highly recommend HSS.
As I have said before- I have worked and been a pt in a few of the top rated hospitals in NJ- and I consider the care I received at HSS far above any that I have seen elsewhere. It would be well worth the trip for the surgeon alone.
Good luck and keep us posted, Mary.

 

[Josephine]

Mary, it sounds to me like a rotation hinge prosthesis would be good for you. Like Sonja is having. This is one example.

broken link removed: https://www.aesculapimplantsystems.com/default.aspx?pageid=3095

"The EnduRo knee system is used in cases of severe primary bone defects, collateral ligament insufficiency and in cases where revision surgery is indicated."

 

[Minnie]

so very sorry you are going through this. I feel your pain. I saw a doctor who was not very happy with my knee yesterday... I am so confused... Do I want to avoid more surgery or do I want to walk without fear of my knee giving out.
I am more frustrated than you can know.
Thinking of you Mary, and if you ever need a shoulder to cry on, mine is available.
Minnie

 

[maryo52]

Well, Jo, apparently my collateral ligaments are fine. Though they take a beating due to the leg shifting from laxity. So not sure what he meant by "more constrained" femoral component.

I was impressed with this guy's approach. He took a good history -- asked me to describe my problem in my own words -- and then did a good physical exam. He knew what he needed to know without looking at xrays or reading the notes from my previous surgeries.

Minnie, yes the FRUSTRATION. My knee looks ugly, it never feels normal, it's constantly swollen, my quad is atrophied. I was told it will never get better although there's room for some quad strengthening. However, the quad will never be completely normal as long as the knee is like this due to some neurological feedback loop.

We did a lot of walking in NYC and while I would expect to be tired, what happened to me went far beyond tired. I am completely spent. Suspect but don't know for sure that the knee is a major factor.

I continue to lift myself off toilets and out of chairs with my arms. It's hard now. I can only imagine what it's going to be like in 10-20 years. The decisions I face are not just for today for for my so-called golden years.

What really annoys me is that pre-TKR, I dealt with the exact same problems. TKR was supposed to solve them. In some ways I was better. For instance, I could stand up using just my legs. I had a little more pain but not much. I am really mad to be in this fix.

 

[Pumpkin]

Hi Mary,
Thank you for your post, I too am facing revision, and having to select an OS. It is very stressful and having to deal with all of this after having your confidence in the medical community shaken.
I will remember your description of your appointment, and look for the similar qualities.
Thank you so much!

 

[maryo52]

Well Pumpkin . . .

Even this morning mulling it over, what strikes me is how daunting it is to trade in the known (not very good but not terrible) for the unknown (better? worse?).

Plus in my case, being responsible for a 94 year old with mild dementia needing 24/7 care in her home (paid employees), it's unimaginable to go through another TKR with that responsibility. And it's not something I can pass on to my siblings due to geography and other factors that only get my dander up!

 

[Greda]

Mary,
I completely understand your frustration. I saw my OS yesterday and still have no answers on what to do. I think when things don't take the "normal route" the patient suffers so much. I wish there was a magic wand to fix it. My knee functions fairly well, but the pain is getting so overwhelming I can't even get through grocery shopping.
Hope you are having a better day.
Greda

 

[Minnie]

I understand how you feel 100%! I had my revision and thought I was free and clear but now having problems again, with catching and sometimes I feel like I have a razor blade under my knee cap. So now I have these long stems and NOW what?? I am so disappointed.

I don't know if you read my post but I went to a new doctor the other day. He said I have patellar clunk ( which you said Mary!) and overhang on my tibia ( which I think accounts for the pinching pain I sometimes have. He said my tibia is so much smaller than my fibia the surgeon was probably left with a dilemma of what to do so just put in the tibial piece with overhang! Why could my doc not tell me.. if my anatomy is messed up I would understand. Keeping me in the dark, I don't understand!

I am afraid to go out and do anything that involves walking. I stood in the grocery store and cried the other day cause my knee hurt so bad, hanging on to the grocery cart for dear life.

Have not been able to post my X-ray cause I have a bad file I think! will try and get another.

It is a tough choice. I am thinking of going to HSS.. I emailed my insurance info today. But feel between a rock and a hard place.
I feel your pain, if it helps to know you are not alone.:cry4:
Minnie

 

[maryo52]

I went to HSS with a written list of questions. Unfortunately the surgeon was "losing his voice" and was trying not to talk much (!)

We need an orthopedic psychologist to get us through these ordeals!

 

[Pumpkin]

:I-Agree::ThankYou:

 

[Janet2012]

Minnie, that's an interesting dilemma. I was wondering if he couldn't have taken two different sizes from two different boxes, but I guess they wouln't work together that way.

 

[Pumpkin]

Minnie,
I have a size 4 femoral component, and a size 3 tibial component. They do mix and match sizes. HSS sounds like the place for another opinion.

 

[Minnie]

Mary.. funny we do need an orthopedic psychologist ! This is so hard to deal with at times!

I emailed HSS, they would be out of network for my insurance and it would be prohibitively expensive. Looking for other options.

How does one find one of the best revision docs in the country? Hopefully one will take my insurance because once you add in the travel expenses it gets very costly.

Minnie

 

[maryo52]

Minnie, that's a good question.

I went to the US News and World Report Best Doctors list (online). Both 2nd opinions were from docs on that list. But who's to say they are indeed excellent?

If you pose your question, members here will submit ideas. We just need to know where you live. Jamie in particular has been very helpful to people looking for another doctor.

I'm ruminating about this myself because, at this point, I have very little trust. Each doc I've seen has a degree of arrogance. The last guy was the most helpful, yet we got to the end of the appointment and I was trying to think of more questions, he kinda sat there looking at me with a look I read as "Are we done yet?"

 

[Coachie]

Just checking in with you to see how things are going. I don't come around much anymore as I have been pretty busy with the marriage, school, etc.

I am sorry you are having such a rough go. I agree with you that we need an "orthopedic psychiatrist". That would help immensely.

Hang in there and hope things start looking up soon

~ Kit

 

[maryo52]

Mrs. Coachie, I think of you often going through this. I followed all your trials and tribulations. Mine are fortunately less problematic. But I feel very awkward because I''m left with an inferior TKR but not one that must be revised. I've forgotten what it is to have decent function in that leg but I'm not suffering per se.

 

[maryo52]

So am feeling rather pathetic. I've done nothing the last two days. I've had to surrender to utter fatigue from walking in New York City over three days. Pre-surgery I would have been fatigued by this amount of activity but only for a day. I'm now on Day 3 of being levelled. As a result am catching up with everyone else's progress here.

 

[kneeper]

:console:

 

[maryo52]

My this forum is busy! My thread sank to page 3 in a day!

Met with my PCP to re-strategize. Have had 2nd and 3rd opinions, conclusion being my TKR is unstable (too lax). The effusion is caused by faster than normal erosion of plastic insert due to extra movement from instability. The particles cause inflammation.

So now I'm being sent to a physiatrist (rehabilitation physician). I've also asked for a knee brace. It was suggested I walk with a cane or poles. I don't feel I need to but my PCP thought it would take some of the stress off my knee.

I am pursuing conservative measures because I cannot say, yes, re-do my knee at this time. For one, I already went through TKR with my elderly mom in my responsibility and don't want to repeat that nightmare. Also my trust in orthopedists is pretty low. Would a revision only make things worse?

I of course shed tears and shared how defeated I feel. I thought I might go talk directly to my ortho about what I learned -- he could've determined what the others did had he bothered to examine my knee at my annual -- but my doctor offered instead to send the 2nd and 3rd opinion notes to my ortho with a cover letter by way of feedback.

Well am I the only one here who is tired of having my bum knee turn into a career? I'd like to go through a day now and again when there was no need to say the word "knee." Or a month without visiting a doctor.