PKR My Drama Queen Patellofemoral Knee

[patriciad]

I too am sorry to hear of your ongoing issues with your PKR especially considering that in retrospect your knee was not in that bad shape.
When I had my consultation with my last surgeon I expressed that maybe I had an unrealistic expectation with my first knee replacement as it had never felt natural or functioned as a normal knee but I did have relief from the awful pain and could now walk and do most activities. He surprised me by agreeing.
I had been told I needed another total and went for a 2nd opinion with this surgeon as he does the Conformis custom total knee replacements which are created to custom fit your damaged joint and I wanted that TKR.
He said I was a great candidate for a Partial and took the time with my X-rays to explain why. He did say that Partials were tricky surgery wise and that there was a lot of poor outcomes because surgeons needed to do hundreds of them regularly. He said he had performed thousands so I trusted him and went the Partial route. I see you have had several 2nd opinions. Can you share what they are saying? Is it worth finding someone else? Yes it really does sound like you have had a poor outcome and I feel sad thinking of your struggles. You have put your recovery to such good use in being such a wonderful and wise advisor here on this forum. I hope that further improvements are on the way.
By the way I have that same reaction to cold in both knees I‘m lucky to live in Florida now so not much of an issue apart from the freezer shopping!

 

[sistersinhim]

Are you having improvement in you muscle yet? It's amazing how much our bodies are connected with each other part. Knowing that your bend has gotten worse since your thigh injury is interesting. It must be tight and stiff.

 

[Jockette]

@sistersinhim My thigh is fine now, it only took a couple of days to feel better.

 

[sistersinhim]

Good. Is your bend back to normal?

 

[Jockette]

Yes, the bend is back to normal. I was worrried last Monday, I didn’t expect my thigh to hurt so much!

He did say that Partials were tricky surgery wise and that there was a lot of poor outcomes because surgeons needed to do hundreds of them regularly.

I do suspect my surgeon has done very few. Delaware is a tiny state and I doubt there are many in my area who qualify for a partial.

I see you have had several 2nd opinions. Can you share what they are saying?

My first second opinion was at 15 months post op. The surgeon came highly recommended and we drove 2 hours to see him. He rushed the appointment, and didn’t say much. He put a shot of lidocaine in my knee ( which was very painful) and had me go down, then back up, a full flight of stairs, foot over foot, which I didn’t normally do. I didn’t have a cane with me, and wasn't sure about doing the stairs. Thankfully there were railings on both sides, but my arms were stretched out wide to reach them both, so it was far from a normal decent down the stairs. He wanted to know a percentage of how much better it felt. I didn’t know what to tell him. I managed to do the stairs but my extremely sensitive knee was still reacting to a needle going into it. He seemed impatient and wanted a number. I don’t even remember what I told him. He put me on gabapentin which didn’t help and after 3 weeks of side effects I stopped taking it. Oh, and he didn’t take any new X-rays, he just looked at the ones from my one year check up, 3 months earlier. Before I knew it the appointment was over, and my husband and I were back in the car, heads spinning, trying to sort through the appointment. Not a good experience!

As far as my sensitivity, he used the word Dysesthesia. He said with anesthesia you feel nothing, with Dysesthesia you feel everything.

My second second opinion was at 22 months. This doctor was very caring, took new X-rays, read through my list of “complaints” (which the first guy took literally out of my hands and set aside and said, just tell me!) We discussed each one, but he didn’t have any solutions for me. He did show me and explain my X-ray and indicated what we would see if the implant was loose. He didn’t see those indications. He was compassionate and sorry I had all my issues. I asked him if he does Patellofemorals and he said no. He added that surgeons were on the fence about doing partials. He did order bloodwork which all came out normal, and he called me himself to tell me. I did like him.

Last Spring during our Joint Replacement Awareness Day that Bonesmart hosts, one of their topics was, “when things go wrong.“ I was able to type in a question, and they discussed it. I sat here watching 3 surgeons who were stumped by my issues (which I had to be extremely brief in writing my question) and had no answer. They did agree that partials are not done often enough for the surgeon get good at it.

My own personal opinion for my discomfort is that something went wrong with the lateral release that was done during my replacement surgery. Maybe he cut too much? Maybe damaged a nerve? I don’t know, but all my continuing discomfort is on the lower, outside of my knee, where I would think the lateral release was done.

The biggest lesson I’ve learned from all this is always get a second opinion, and maybe more! It never occurred to me to do that. I was so innocent and inexperienced and hurting that I trusted the first surgeon I saw.

 

[sistersinhim]

 

[Jockette]

Is it worth finding someone else?

My trust level is pretty low at this point. I do have a list of possible surgeons that I’m considering, ones I read about from members here. I do wonder though, if it would be a good idea just to make a appointment to meet them, so if it becomes an emergency, I know who to call. Otherwise, in an emergency I may not have a choice, and I want a surgeon who I won’t have to fight with when I do my recovery/rehab my way.

 

[patriciad]

I think that’s a great idea to pre-interview them! You can do a lot of online research, and get reviews but sometimes you get a better feel when they answer your questions in person. I’m not sure where you live or if Insurance will cover the meetings - I know 2nd opinions are always covered. I totally understand your lack of trust after all you’ve been through but personal recommendations are the best referral so at least you have some names from members now and if you have to travel a bit farther from home it would still be worth it. This is really affecting your quality of life and you shouldn’t have to grin an bear it.
Thank you for all the great advice you give on here.

 

[Jockette]

I would make the appointment as a second opinion, and past experience tells me they won’t offer me anything at this point.

My surgery was done in Delaware, my first second opinion was in the Philadelphia area, and my second was in the Baltimore area. Both are about an hour and a half drive, so that’s not a problem.

One of the surgeons on my list is also in the Philadelphia area, is with Rothman, and they have an urgent care area. So if anything becomes an emergency, that’s where I would go. If it happens before I meet with one of them, then I would ask for follow up to be with the one of my choice.

Thank you for all the great advice you give on here.

Thank you for the compliment. I just want to help others have a good recovery, and protect them from the type of PT I was offered, before I found Bonesmart and learned there are different recovery/rehab approaches, and I don’t have to do one that doesn’t agree with me, like I did the first month of my recovery.

 

[patriciad]

You really have been through the mill and it and sounds like you have had one decent 2nd opinion but no solution to the ongoing pain and Discomfort. Did the 2nd surgeon that you liked suggest a Revision or having a Total done at some point. I’ll admit the thought of that would keep me awake at night and it would be a case of last resort but might be worth researching surgeons in the area who specialize in Those type of surgeries. You are brave and resilient and hopefully improvements will continue.

 

[Jockette]

No, the second surgeon, the one I liked, did not recommend anything.

I’ll admit the thought of that would keep me awake at night and it would be a case of last resort

This is exactly how I feel. I’m not desperate enough to look into it yet. A couple of times I almost made an appointment, just to check out the surgeon on my list, but each time I chickened out. I admit I have a bit of PTSD from my whole experience, which is a shame, as I went into this looking forward to getting rid of the pain I had. Now I’d love to be back at that point, the pain I had was only occasional. Actually, that pain is pretty much gone, but, I have several new limitations since the surgery so it has not been a good trade off. It is what it is, and I’m managing well enough. Thank you for your support!

 

[jsa]

Sorry to read this @Jockette, I wish it turned out differently for you but you are right, it is what it is.... I can well relate to that conclusion. I don't have much experience with PKR's but my brother-in-law was to have one but instead the doc decided to do the whole knee to save having a revision when it got worse. He didn't need the whole thing done as only the one side had thinned but after they did it he was glad because the other leg needs doing now and since he kept putting it off, the whole knee had gone so its probable the other side of his first knee would have ended up going anyway.
I know you said you had an x-ray but is it possible it's not telling the whole story? Maybe you need a scope to check there is no debris causing problems or no further advancement of your arthritis. Just a thought, I'm certainly no expert.

 

[Jockette]

Well, today is my 5 year anniversary. I can’t believe it has been 5 years, and I’m amazed I‘ve made it this far without needing a revision. I guess the implant truly is where it’s supposed to be. Whatever my issue is, it‘s not with the implant.

The only thing that has changed is I am a lot less angry about my poor outcome. I am thankful I can do as much as I can. I truly hope I never need a revision.

I can go up steps foot over foot, if they are shallow steps. I can’t even describe how bad/weird it feels if I try going down steps foot over foot, even on shallow steps. It’s like my knee just won’t bend enough with all my weight on it, going down, and yet my ROM is fine in all other situations.

Like I’ve said many times, it is what it is.

 

[sistersinhim]

Happy Kneeversity! At least you are not where you were 5 years ago! Your attitude is great and letting go of your anger is so healing. Even during your struggles, you have always been here to help others. What a blessing you are to all of us on this site.

 

[Layla]

Cheers to Five Years!

 

[WFD]

It’s like my knee just won’t bend enough with all my weight on it, going down, and yet my ROM is fine in all other situations.

@Jockette , is it possible that this occurs because your quad is not strong enough to support you going down the stairs, and so your body protects itself by refusing to bend the knee?

After five years, have you recovered well enough that you could try a strengthening program, such as using a leg press at a gym?

 

[Jockette]

@WFD No, it‘s not because of my quad. It’s something in the new structure of the knee. All my issues are on the lower lateral side, suspiciously where I had a lateral release done at the same time as my partial, on a knee that never had a tracking problem until during the surgery. Something is not right but since my X-ray is fine, no one has looked beyond the X-ray. (I’ve had 2 second opinions and at this point I’m not interested in a third)

 

[CricketHip]

Happy 5 years! So glad you are in a better place!
Are you continuing the counter strain therapy when you can?

 

[Jockette]

@CricketHip No, I stopped going to counterstrain. The 2 hour and 40 minute drive (one way) was just to far to keep going. I wish their office was closer, I really liked them and I do think it helped other body areas. (Not the knee)

 

[Carol Anna]

@Jockette - I just need to say that I think you are amazing. Going through such a bad recovery and still having problems and yet you still manage to support us all and give us welcome advice. And I would like to give you a bit THANK YOU XXX