TKR Update

[Jockette]

I guess I should have done better research prior to the surgery. If I had any notion that I would be worse off then before surgery I never would have done it!

Most people are much better off after this surgery. You and I are in the minority.

But I agree, I think if I’d known more about the recovery and possible outcomes I’d have waited until I was worse than I was. Looking back, it was way too soon. I didn’t know how good I had it, with the arthritis pain I had. It really hadn’t interfered in my life too much, and I was not bone on bone. My surgeon should never have offered me this partial, and I was too trusting, it never occurred to me to get a second opinion.

All I can do now is make the best of what I have now, as 2 second opinions have not found anything to fix. But, my husband and I are retired, so my knee doesn’t interfere with making a living, or anything else major.

Again, I do believe things will get better for you. My knee did. I had a lot of improvement in my second year and more, now in my third. Do I like my knee? No. But it’s a lot better than it was that whole first year.

 

[LD of Michigan]

Hmm, at 29 days, I am wondering how things are going to go once work resumes. I was grinding bone on bone just to the point of being woken up at night. For sure I had bone bits grinding and floating about (spurs). I did not need x-rays to confirm that. I had this whole pivot-on-the-good-knee thing when I wanted to turn suddenly.

As I mentioned the surgery was not as hard as I thought, but the WHOLE procedure, process, recovery, adaptation is a bit much.

I did my research, reviewed the procedure, doctors. I had three opinions; quickly determined I was not a same-day (outpatient) candidate. In a way for me my knee feels a bit normal upon walking (general weight bearing) but it clunks at points and then I have the 'I'm an android' feeling.

At the three month period is when I think I will have a settled opinion.

 

[Helizabug]

I think the research suggests that there isn’t much else you could have done to restore your knee to a healthier state — if your knee was far enough gone. So no matter how much research you did, you still might be where you are today. That regret might be eating at you more than it should.

On the other hand, I’m sure it’s frustrating to think you could have put up with the old pain longer and put off this debilitating recovery.

Tough spot. I hope it eases up.

 

[DOCCUKE]

Toughest part is it was my own choice. I was better off before, just didn't know it.

Live and learn

 

[DOCCUKE]

I need to stop looking at other folks stories.
Really fighting with trying not to be angry all the time & to not be depressed. This darn surgery has been nothing but bad!! Almost 6 months out & still have more pain & less mobility then pre surgery!

Pretty impossible to not feel stupid. Lost a month of pay, a ton of riding time & still mostly work from home because more than 2 days going into work gets too painful.

And my brilliant surgeon keeps telling me" you need heavy PT 3 to 4 days a week!! " I looked him dead in the eye & said "That ain't happening scooter". He says my implant has not worked loose so just keep on trucking!! I honestly do not expect any improvement at this point!! Managed to half cripple myself with a bad decision!

It is exasperating!!

Ok I'm going to shut up now!! Sorry, I know I sound like a broken record. I am just really unthrilled!!

Hope you all have a pain free evening

DOC

 

[Jockette]

I’m sorry things are not improving for you. I wish I had an answer.

 

[DOCCUKE]

I don't be there is an answer other than live with it!!

I will say again to anyone thinking about this surgery. Make sure you cannot live with what you have. If you can still walk & work think twice about this procedure!! I sure wish I knew how bad it can go!!

Granted many folks do really well, but that is not a given?! I have literally crippled myself & it was my choice!! Pretty disgusted!!

 

[Jockette]

Don’t rule out a second opinion, somewhere down the line. Go to a big city for it.

About a year ago I was talking to an acquaintance who had both her knees done by the surgeon who did my partial. She told me she asked him about a partial, and he told her “oh, I don’t do very many of them.” I thought, Bingo, that’s why I have the results I have. Many who have had totals with him are happy, but I don’t know anyone else in my area with a partial. Until mine, I didn’t even know they did partials. I knew nothing. But I know a lot now!

When my possible/probable revision comes up, I won’t be having it done where I live. I’ll travel to a bigger area. Northern Delaware, at the very least, or Baltimore or Philadelphia.

I was pretty mad, too, about this whole thing that no one told me about beforehand. But at almost 3 years, that anger is settling down. Right now I’m just doing what I can and getting on with life. While I have a lot of weird discomfort, it’s not actual pain, for which I am thankful. And it will have to get a lot worse, or become an impossible situation, for me to have a revision.

I know you are low on hope, so I’ll hope extra, that you will have improvement. I was not in a good place at 6 months, but it’s much better now, even with my discomfort and limitations.

 

[Macknit]

I understand the frustration and anger. I've experienced it with a different surgery that still is causing me issues 2 years out....(Thumb arthroplasty with LTRI) I can consider a revision, met with a OS/Hand specialist last summer who has said he would do the surgery....However, I knew this TKR was coming so I explained to him I would wait and see. The pain and functionality are still issues for me. So I do understand...it is also something that has planted itself in this TKR recovery, when I was having bad days. I would catch myself wondering if the knee was going to end up like the thumb. I nipped that thinking ASAP, because how we think is most likely to become how we are!

You could think about some hopeful mindfulness, instead of the regret? @Jockette is a great example of someone who has learned to move on. Pain management BCT is a good place to start. It is just a different way to think of something that you had different expectations for.

I wish you luck on this continuing journey!

 

[Jockette]

It takes time to process this recovery under the best of circumstances, and lots more when it doesn’t go well.

There were many days that first year that I felt like a victim. I have a Highly Sensitive Personality (google that) so I’m sure that made matters worse for me. I’ve also learned that means my body is also highly sensitive, and I’m now convinced part of my problems in recovery were due to the fact my body just didn’t like the intrusion this surgery and implant.

My first second opinion introduced me to the word “dysesthesia” - an abnormal unpleasant sensation felt when touched, caused by damage to peripheral nerves. He also described it as the opposite of “ anesthesia”-which is where we feel nothing. It’s an interesting concept and seems to fit with the particular discomfort I have, which very few others have.

It will be 3 years in March since my partial. I never, ever, dreamed I’d feel like I do, 3 years later. I innocently thought I’d be fully recovered in 2-3 months, according to what I read about partials, and what my surgeon’s office did and did not say. So, this recovery was a very upsetting shock! How dare they not prepare us better.

Thankfully, not only has Time done a lot of healing in my body, it has also done a lot of healing in my mind. I hope and pray the same for you.

 

[KneeHelp]

I can totally relate to your frustration. I'm at exactly 1year and I was much better off before my surgery. I had my annual and everything shows ok, but the pain and stiffness are still a daily thing.

My GP suggested MORE pt, no thanks!

I ice daily, stretch, use a tens machine and have tried all topicals. I agree, pain meds just make me sluggish.

My doc told me he just had a lady with the same surgery date as me and she also has the stiffness, just give it about 6 more months and it should get better. That is what has been said at every appointment, lol.

I know more people regretting the surgery than ones saying everything went well. I also know law suits because of the surgery.

Imo, my surgeon was great, the soft tissue and everything else is just taking FOREVER to heal. There is no way I could have gone back to work.

Wishing you the best. I have researched for a year now and haven't found anything to speed things up.

 

[DOCCUKE]

One of the things that angers me is the surgeon telling before surgery that 2 months out I would be in minimal pain and 4 to 6 months out I would be pain free!!

I told him I have to work, retirement is not an option & will not be for sometime. I took one month off unpaid, then worked one month from home, IT helpdesk support. Went back on the 3rd month & did not make it through the week. Now 6 months out working from home 2 to 3 days a week. Last week did 3 days at work & by Thursday morning could hardly walk!!

I have never before in my life considered suing anyone. I am seriously considering now! This has significantly impacted my life! I do not want to wake up anymore! Going to sleep is the best part of my day!

I am angry all the time. It is wearing me down!!

Second opinion is a possibility, however if they want to do a revision I don't know if I am up for that!!

If I do get a second opinion it will not be in NH, I will go to Boston

 

[Jockette]

Get your records from your surgeon, X-rays, surgical report, and appointment notes, and any other tests he’s done. (Mine also did an MRI when I first went to him.) Any time you go after you have that, get a copy of the appointment notes.

I wanted my surgical report because after being on Bonesmart so long, I thought the details would be fun to read. Well, lo and behold, when reading it I found out he had also done a lateral release. Almost all my discomfort is in the lower, lateral section! So, I wonder what went wrong there. And, if he ever told me in any check ups about the lateral release, I don’t remember. I don’t think he told me.

One of the things that angers me is the surgeon telling before surgery that 2 months out I would be in minimal pain and 4 to 6 months out I would be pain free!!

No doctor should tell a patient this. While it’s possible, for someone who has an amazing recovery, it’s very rare.

 

[Jaycey]

If you can find a surgeon who specialises in revision surgery that will be your best option. Yes, you may not want to face more surgery. But if there is an issue with your implant, revision will address this.

Find someone who will listen to your concerns and more importantly - someone straight talking. You don't need anymore of this "best case" stuff. It is so much better to face this recovery with reasonable expectations.

 

[steverup]

Man, I’m so sorry to hear about your story. It sure sounds similar to mine with a few exceptions. I’m 2 years 3 months post-op now and finally pleased I did. It still hurts, don’t get wrong but at least it’s bearable now. 8 weeks post-op my kneecap dislocated from a torn tendon so they had to reopen my knee and reattach it. Really complicated rehab because it had to be immobilized for the next 8 weeks which is the worst possible thing for a TKR. BTW I was scheduled for the other TKR 3 months after the first but like you i swore I’d crawl on my hands and one knee before I did this again! I sure sounded like you and got so frustrated (I was scaring myself). I went to two pain specialist who were worthless and I got even more depressed... my primary care doctor talked me into trying another pain specialist that she had heard great results from.. I’m sure glad I did.. I’ve been taking two medications now that don’t mess with your head but really helps with the pain. So much so I’m now scheduled for the other knee. My point is don’t give up! I know it’s frustrating but keep trying until you find the right person. I’m 6’ 297

 

[DOCCUKE]

I will be 62 2/21/2020, 6'4" & 295 pounds. Was 395 pounds a year ago.
I don't do opiates much. Had oxycodone for the first week after surgery, then tramadol for the second week. They helped me sleep a. Little, never really helped with the pain

Now I use Tylenol or Ibuprofen & ice

Seeing another doctor & getting a revision will almost certainly lead to me being unemployed!! Can't do it, hence the anger, depression & considering suing!!

This surgery has done nothing other than screw up my life!!

 

[Jamie]

If you're finding yourself depressed and angry a lot of the time, I suggest you talk with your GP about this. I'm sorry this happened to you, but there really isn't anything you can do about it now. Even a lawsuit would likely be unsuccessful as you have to prove negligence.

The best thing you can do is to try and get this fixed. If there is a problem with your knee, you need to know what it is and what your options are before you can begin to weigh alternatives and make the best decision for yourself.

Although it's not ideal, are you eligible for Family Medical Leave? This is a government program for anyone who works in a company with 50+ employees. You are allowed 12 weeks of medical leave in any calendar year. The clock restarts on January 1st, so even if you used this program with your TKR last Fall, you are now eligible for another 12 weeks this year. Granted, it is unpaid leave, but at least you have a guarantee of a job after 12 weeks off.

If you decide you'd like help finding surgeons in the Boston area, please let me know and I can possibly help you. Be sure and tag me so I see your response quickly. To do that, you type the "at" sign (@) followed by my username ... like this ... @Jamie

 

[DOCCUKE]

Timing is everything. As luck would have it the company I work for is in the middle of major changes. Without a lot of detail because of corporate reorganization going on everything is under a microscope.

They are already flip flopping back and forth on whether or not to outsource the IT Dept!

Being 62 is not an asset in the job market!! Particularly 62 & walking with a bad limp!

Really not sure what I will do. Leaning towards just living with it!! May be the only realistic option

 

[lionsm13]

If you can find a surgeon who specialises in revision surgery that will be your best option. Yes, you may not want to face more surgery. But if there is an issue with your implant, revision will address this.

Find someone who will listen to your concerns and more importantly - someone straight talking. You don't need anymore of this "best case" stuff. It is so much better to face this recovery with reasonable expectations.

@Jaycey;
Not sure if you could find a physician who specializes in just "revsion surgery"?
While they might be out "there"in my area they are a few who do revisions but finding one who does revisions exclusively and nothing else might be thin at best.

The OS I saw last week said that he did "50" Knee revisions last year.
He also does regular hips and knee replacements.

Even if one were to find one who did just revisions how could one get there and then return home?
Taking an air ambulance might be/probably be impractical, not too mention the cost which would probably about as much or more than the revision itself.

 

[DOCCUKE]

Problem now is I am just treading water. If I go through another surgery the amount of time I will need for recovery will cost me my job in the long run, which will put me in a downward spiral financially. I do not see any way other than eating the pain & hopefully someday I will only be as bad as I was before surgery!! Not so rosey but reality is a complain!!

Stupidest dam thing I ever did was get this surgery!!