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Discussion in 'Knee Replacement Recovery Area' started by Momma-me, Jun 8, 2017.
My prayers are that you are led to the right OS!
@Momma-me .... reading back over your thread I noticed that you have a known metal sensitivity and it doesn't seem like you may have pursued testing for metal allergies yet. I strongly suggest that you notify your doctor at HHS about your metal sensitivity and get the blood metal test that is only available from this site:
You will likely have to pay for the test. You want the Orthopedic Panel 2 test. You send for the kit and your GP draws the blood for you. Then it is sent back to the company. Once you have the results, you can send them to your doctor at HHS. If you know you have metal sensitivity, it is likely this is at least part of your problem (if not the entire issue
I suggest you check to make sure that one of your doctors will order the metal test to be taken. I bought a test kit for over $550 and no doctor would order one for me. I ended up sending the kit back. Thank God they refunded me. Before my next implant, I will insist on an allergy test. It's better being safe than sorry!
@Momma-me ... just checking back with you to see how things are going. Did you see any of the surgeons I recommended? Please tag me and let me know how you're doing!
Hello everyone! I need your advise and help please! I am going to give an update. I know it's long, but if you can get to the end, I would really appreciate it
After pain that never went away in the right knee, (see signature for procedure), I underwent a radio frequency ablation in July of 2018. It actually did help a little and I felt like, "OK, maybe this is going to be alright now!" and I continued PT and went back to work. (This was my 3rd attempt at going back to work).
Fast forward to Christmas/New Years 2019. My left knee was hurting more and more from wear and tear and walking solely on that leg for so long. My insurance company is denying me my Monovisc injection in the left knee; apparently they changed their policy on that. They just won't cover hyaluronic acid injections anymore even though I have already had 5 of them and they did work for me for approx 3 months...problem was, they only covered them every 6 months, so I had to hobble around for the last 3 months waiting for the time to be up so I could get another one.
Anyway, my left knee has sharp pain in it when weight bearing and it throbs every night and there's nothing I can do about it. (??) On my right knee - the one that had the PFR and OATS - I can't walk without a limp and the more the left one hurts, the more I walk poorly on the right. Sometimes the right one feels unstable and I will have a sharp pain in that one. I am out of work now (again!! ) and back on crutches. Basically, the crutches are for stabilization and to make sure I don't fall when I get a sharp pain.
I forgot to mention, during all of this... I moved.... I now live in Charleston SC!
So, I made an appointment with my doctor in NYC end of February 2019; 2 weeks ago. because I don't really know anyone down here yet and I had new MRIs of both knees. Unfortunately, she didn't have time to look at them because the radiologist hadn't written the report on them yet before I saw her. And she was leaving the next day for a month long vacation. She did briefly look at the left one, scrolled through the images quickly.
She said I have grade 3 under the knee cap; she couldn't explain why I had sharp pain on the medial side. I told her I felt like something ''broke off" one day and I have had sharp pain ever since. I was at work and 2 of my coworkers actually had to carry me back into my office!! Anyway... she told me that she would do another PFR on the left but not until the right one "recovered more fully". OK... it has been 2 years since my surgery and it's still painful; how much more recovery does it need?
She told me to "fire" my PT and get into more aggressive PT for gait retraining. I have been in PT for 3 years. I told her I was walking this way because of pain in both knees. She never looked at the right MRI to even know what was going on in there.
So her recommendations were to "keep getting the hyaluronic acid injections on the left" Umm I just told her my insurance wont' cover them anymore... I actually am in the middle of an appeal to see if I can get coverage but they said it may take 90 days for an answer. And she mentioned PRP, also something that costs thousands of dollars and isn't proven to work. She also said I should see a pain specialist. I had been doing that for the entire last year of my life; he is the one who did the radio frequency ablation! She seemed to have forgotten that I have already been down that road.
So I left the appointment in tears, literally feeling hopeless because she didn't offer any solutions. She barely listened to me. I think she was already in vacation mode.
Anyway I had the radiology dept send me the reports in the mail and I finally got them yesterday. I will give you a little snip -it.
Left knee MRI: "Cartilage over the patella has grade 3 loss with near exposure to bone..." "Patellofemoral dysplasia grade 3 with fat pad impingement"
Nothing else too interesting. No indication of why I'm having such sharp pain on the medial aspect of the patella, because the arthritis seems to be more on the lateral side.
I want to say this though: in both of my previous MRIs, the first one I had done prior to the scoping and the second one that led to my surgery, the surgeons said that when they got inside my knee, it was "way worse" than what they saw on MRI. The first time, my xrays and MRI looked totally normal and the Dr did the scope and found grade 3-4 arthritis under patella and a large cartilage defect in the lateral compartment (that later got fixed). And NONE of that was seen on the MRI. SO.. I am quite sure that there is more going on in the left one that they are not seeing, but either way, at a minimum, I have grade 3 arthritis under the knee cap that is causing pain and immobility.
Right knee MRI: The implant itself and the OATS graft look good; no signs of loosening, infection, etc. "Meniscal degeneration noted, with free edge blunting and fraying, but no defined tear" "Chondral thinning over the medial femoral condyle with new focal area of exposed bone over the inner aspect" "cystic change along posterior of the graft, that has increased in size" "new area of high-grade chondral thinning lateral to the meniscal horn over the posterior of the lateral plateau, yielding small focus of exposed bone"
So there is is! Clearly, the arthritis is spreading on the right. No amount of PT is going to fix that.
I am trying to get in to another surgeon here in SC who apparently does revisions.
I am at the end of my rope and I feel like I'm just going around in circles.
My question: Is it unreasonable at this point to go in to my new surgeon's office and basically ask for a bilateral TKR? I am done with my knees ruining and dictating my entire life and I feel I have exhausted all my resources. I wake up every morning and think about my knees. I go to bed at night, thinking about my knees. Every step I take, everywhere I go, I think about my knees.
The thing is, the left knee - according to the MRI - doesn't really warrant a FULL knee replacement because the arthritis is only under the patella. But I tried the PFR in the right knee and within 2 years, it spread to the other compartments. I mean, I am assuming that having chondral thinning with areas of exposed bone means bone on bone arthritis?? None of those findings were on the last MRI I had done, 1½ yrs ago.
I don't want to keep having surgery after surgery and trying this and that and being out of work and suffering, and walking on crutches blah blah. I guess I need your opinions. Am I 'giving up" too soon in wanting to be off this roller coaster and just asking for bilateral TKR? Does it seem reasonable to ask for a TKR on the left side even if the arthritis is only under the patella at this point?
Thoughts/advice/please and thank you!
Sorry so long and thanks for reading xoxo
Is there anyway you can change the title of my thread?
Thank you for your help!
Jamie is on sick leave, having had a shoulder replacement. If you tell us what you would like your new thread title to be, we can change it for you.
By the way, yes, once you find a new surgeon, you should ask about having bilateral knee replacements. He/she will either say yes or no, but at least you'll know.
Don't settle for any more temporary fixes for your knees. Your age is immaterial. What the surgeon should be considering is the state of your knees and the impact that has on your quality of life.
It is so hard to find answers to our problems when we don’t have a text book recovery. I’m in that spot myself. Like you, my poor Patellofemoral replacement outcome is uncomfortable enough that it’s on my mind all the time. I’ve had 2 second opinions but since my X-rays look fine, they don’t have an answer. I haven’t even been granted any further testing to investigate it, because my X-ray looks fine.
I’ll tag @Josephine for you.
Seeing a new revision surgeon is your next step, I’m glad you are looking for one. I sure hope he takes you seriously. If it was me I’d want totals done, too.
My first second opinion rushed my appointment, too, like yours did. If their knee felt like ours does, they would want to be taken seriously. Rushing an appointment and not listening is totally unprofessional.
Hugs to you!
@Celle can you just change it to: "Revision to bilateral TKR? Thoughts please?"
Thank you for tagging Josephine, I will look forward to her response.
I am wondering if the MRI report warrants a TKR and or if I will need to "convince" the surgeon, or if based on everything I have been through, he will just agree it is the right thing to do.
Hopefully, I will know something next week.
As I was scrolling this forum last night, I saw someone else's post, and that's when I knew I was done.
"You are too young to be living your life in constant pain.
You are too young to have your mobility so badly compromised
You are too young to be giving up on the lifestyle you enjoy
You are too young to feel so old"
I would give credit to the poster, but I am not sure where I saw it now...
Celle is usually the one who posts that. I love it.
@Momma-me I am quite a bit older than you and am on Medicare. I was scheduled for a right knee replacement when my left knee "blew up". After an MRI of the left knee, my ortho said there was arthritis but also I still had some cartilage. He gave me a shot and refused to do a bilateral.
I picked up my marbles and went home, on my walker because the pain in the left knee was so bad I couldn't walk without the walker. Still not bad enough for that doc, apparently.
A friend who had bilateral knee replacement referred me to a wonderful OS at Scripps in LaJolla. It was a 45 minute drive to his office, but well worth it. He looked at the MRI's of both knees, took his time explaining everything to me, told me he didn't see any reason not to do both knees at once, given how damaged they both were. And I made up my mind to go with him. I fired that first surgeon, and I do not regret my decision.
I could not see any benefit to getting the knees done one at a time. I was then 72 years old, and figured the quicker I could get them fixed, the better I could enjoy my remaining years on the planet. Know what I mean? Granted you are 24 years younger, but still, I am sure from reading your posts that you would be thrilled to get on with your life.
I do not think about my knees all the time, they are not the last thing I think of at night, nor are they the first thing I think of in the morning. Sometimes they yell at me to get my attention, but most of the time they just quietly do their jobs. I love massaging them, because they are knobby again just like they used to be before all the arthritis issues. Instead of bone knobs, I suspect they are artificial knee knobs, but they feel great nonetheless. There is absolutely no swelling any more, no heat, no redness, just knobby old 74 year old knees. In short, they are gorgeous, scars and all.
I hope you find a great surgeon and get the help that you need.
@Momma-me, definitely ask around and get recommendations from neighbors, church members, coworkers, anyone you might know who has had TKR. I know we have an index of surgeons on this site but have to admit I haven’t figured out how to access it using my iPhone (shame on me!). @Jamie may also be able to provide some recommendations if you PM her with your new location (do not post it here for privacy reasons). It sounds to me like you are definitely a candidate for a bilateral TKR, one being a revision. Hope it all works out.
Jamie had a shoulder replacement last week so I don’t know when she’ll be in working mode, so if you don’t hear from her right away, that’s why.
Yes, that was me, unless anyone else copied it. It was probably sent to someone in the Knee Replacement Pre-Op Area.
You can ask, but the answer may be no.
Doing a revision from one sort of knee replacement to another sometimes takes a bit longer than doing a first-time knee replacement. Doing both knees in the same operating session can be a lengthy commitment in time and energy for the surgeon - replacing knees is quite hard physical work for the surgeon.
It may be that your new surgeon will be prepared to do a second knee a few days after the first knee, though.
In your shoes, I wouldn't be contemplating any sort of partial replacement for the left knee. I'd try to go straight to a TKR.
@Celle I don't like to quote someone else's work without giving credit, so thank you!
If what I wrote helps someone, I'm glad to have it passed on to others.
@Celle thank you for your response. That makes sense; depending on how long or complicated the revision would be, maybe they would have to space it a little apart.
I am wondering about the left knee; even though my MRI says the arthritis is only under the patella and not affecting the other compartments... (even though if they go in there, I can assure you... I have a cartilage defect in the medial aspect... it feels EXACTLY like my right one did before the surgery)...
I feel like most surgeons will say I'm either "too young" OR...
that because it is in only one compartment, it doesn't warrant a FULL KR.
Those are the 2 responses I always hear. How did some of you that only had arthritis in one compartment, get a surgeon to OK a full replacement instead of a partial?
@Jamie I hope you have a smooth and speedy recovery from your shoulder surgery!
Quite often, when only one compartment of the knee seems to have arthritis, it becomes apparent during surgery that other compartments are also affected.
In view of the problems you've had with your first PFR, I think you'd be justified in insisting you don't want another.
And you're definitely not too young to have a TKR!