PKR My Drama Queen Patellofemoral Knee

[forbesy]

Hi Jockette I can't agree more and love the site for all the support I went through with my three hip replacements and left knee replacement, I really don't know what I would have done without them.

 

[Jockette]

Yesterday, at 3+ years post op I noticed an improvement with my knee.

For all my recovery I have had an extreme sensitivity when anything touched my knee, but most of all pants. Last summer I wore a simple dress one day, and as it lightly brushed against my knee when I walked, it felt the same as when I wear pants.

Yesterday I had an occasion to wear a dress all day, and either last night or this morning I realized the dress didn’t give me that sensitive feeling! I am amazed that I am still improving at 3+ years post op! Who knew!

 

[Rockgirl4]

@Jockette That is awesome news, and I'm thrilled you're continuing to see improvement. I agree these little things seem to come out of nowhere when we're not expecting anything.

 

[Jockette]

Well, I finally tested out my knee at the beach. I haven’t been to the beach since my surgery in March of 2017. My outcome has been so poor that I wasn’t the least interested in trying to walk in sand, and I don’t like the beach anyway, so avoiding it was not a hardship.

I’m happy to say that my knee did well enough walking in the sand.

However, my knee did not do well with the stairs in the house we were staying at. I did do ok on the outside stairs, as the steps were a shorter height, but not the stairs inside. This continues to be disappointing as it was one of the reasons I had the surgery.

 

[eaglemom]

It's hard for me to wrap my head around someone not liking the beach!! My dad didn't like it, but he didn't like the sand, the beach was fine!

Anyway I'm glad you were able to test the knee out. Stairs, the bane of my existence. The plus is you were able to do the outside stairs. That had to have felt good. There is nothing wrong with doing stairs one step at a time - expect that's not what you wanted from your surgery. Sometimes I guess, sadly, we just have to adjust our expectations. I know I can't do any steps and wonder if I will ever be able to. Since you've noticed your still improving possibly you'll concur steps in the future.

 

[Jockette]

It's hard for me to wrap my head around someone not liking the beach!! My dad didn't like it, but he didn't like the sand, the beach was fine!

Sometimes I think I’m the only one who doesn’t like the beach. But I do like the beach house! It was lovely, quiet and cool, and I could see the line of the ocean from the house. My kids enjoyed their many hours at the beach and I enjoyed the time alone at the house. We enjoyed the rest of our time together. A perfect week for all of us!

 

[Jockette]

And I have learned to relax and accept my knee for what is is today. It’s much better than it was at my one year anniversary, and better than even at my 2 year anniversary.

Since no one has found anything to fix I will continue to manage with what I have, as long as I can, and be thankful that it has improved to the point it has.

 

[sistersinhim]

I don't like the beach much either and mostly it's because of the sand and the crowds. The water is wonderful, but getting to it is a rough go.

I'm so glad the sand didn't hurt your knee. That's a big test and it passed it! You don't have to deal with steps but every so often, so that won't hold you back!

 

[Jockette]

In 5 weeks, it will be my 4 year anniversary. It’s hard to believe it’s been 4 years!

My whole first year was difficult, physically and emotionally. Poor preparation by my medical team left me with unrealistic expectations, and it was hard to adjust to reality. Then, the frustration of anyone and everyone, offering their advice. With the exception of Bonesmart, some of it was good, most only caused me more stress.

Thank the Lord I found Bonesmart, I don’t know how I would have managed if I hadn’t.

As I’ve said to many members, I had a lot of improvement in my second and third years post op, for which I am thankful. After 2 second opinions found nothing to fix, I decided to just try to get on with my life. It took me a long time, but I have (mostly) accepted that I’m one of the ones who didn’t get a good outcome.

Even with those improvements over time, I still struggle with some of the same issues I’ve had all along.

I still can’t do stairs, unless they are very shallow steps. I admit this frustrates me a lot and even embarrasses me a little. Sometimes I still use a cane to go up and down a flight of stairs, if I try it “the adult way.”

As long as I’m wearing shorts, in warm weather, my knee doesn’t bother me too much.

It is still very sensitive to any angle it doesn’t like, like when I lean forward, loading the lower shelf of the dishwasher, making the bed, etc. (even while wearing shorts.)

Wearing pants is a whole different story. The absolute second I put pants on, it still feels like someone has jammed a pole into the side of my knee, and left it there. It’s not incision sensitivity, it’s deep inside. Right about where my surgeon also did a lateral release during my replacement surgery. I wonder if I might have a damaged nerve.

I still have to poof up the quilt in bed so it’s not totally laying on my knee. I still have to sleep with my legs up on my foam wedge, because my knee is still very uncomfortable if I lay on my side. My knee often feels out of place. Thankfully, elevating my legs all night seems to reset it to its happier place.

My knee still aches in cold weather, even in the refrigerator section of the grocery store. I keep the temperature of my home way warmer than most people, so I can wear shorts, at least at home, all winter.

So, I try my best to keep my knee happy, and just tolerate it when I can’t. While I’m not happy with my knee, I dread the day I’ll need a revision.

 

[Pumpkin]

Thanks for the update, glad to hear your knee has improved over time, and you have found ways to adapt to its peculiarities.

 

[Jockette]

its peculiarities.

Thanks, that’s a good term for it!

Definitely not what I was planning on 4 years ago. Life doesn’t always go the way we plan.

 

[Cococay]

Jockette-
Although I’m so glad you found ways to adapt, I feel like there should be an answer or solution of some sort that would at least help some of it. You shouldn’t have to settle.
You don’t have hope that a revision could potentially fix any issues?
It just seems unfair to you.

 

[Jockette]

Thanks, @Cococay but I don’t really think there’s help and to be honest, my
trust level is pretty low at this point. I’ve seen other members with poor outcomes, who’ve tried lots of things that didn’t help, and I’m not willing to subject my leg to further intrusions. 2 really good surgeons didn’t know what to do with me and neither offered a revision.

I now know the difference between the pre op pain I had, and the post op pain, and the long term discomfort of a poor outcome. The pre op pain I had was nothing, compared to the post op and my long term.

I actually just recently took that score chart test, in the pre op reading we have, to see how much your knee affects your life, and I answered the questions keeping my pre op pain in mind. According to that, I should never have had the surgery, as it really didn’t impact me very much. I only had pain getting up from a chair, sitting down in a chair, and doing stairs, which I was doing “the adult way.” I could walk fine, I was not bone on bone, no swelling, and it didn’t wake me up at night. And I’m not just forgetting what it was like then, I do remember the pain at those times hurt, what I thought was a lot. I expected the surgery to fix that. Actually it did fix that particular pain, but left me with something different.

I asked the second, second opinion if he does Patellofemoral partials, and he said no. He said surgeons were “on the fence” about it. At my one year check up I asked my surgeon‘s office how many Patellofemorals my surgeon had done, they said they’d have to look into it and get back to me. When they did call me they wouldn’t give me a straight answer.

 

[Cococay]

Well I absolutely understand why you don’t want to have any type of invasive procedure and lost trust in the medical professionals -or surgical procedures. I guess I just feel bad you went through all that to end up with struggles, but you are very well informed and aware and your the only one who knows what’s best for you- my point being- I’m sorry that you have had to deal with these things- and my hope is that there will be improvements for you at some point.
i always appreciate the advice you give!!

 

[liam2015]

Hi Jockette ~ I thought I would come on your page to see how you've been doing in the 4 years since I've been absent. I am so sorry you still have ongoing issues but I'm happy for you that you have come to some acceptance and have learned to manage.
I do remember the sensitivity issues you were having and still have. my p.t. the other day, was talking to me about the sensitivity on my incision (it's quite long from knee to upper hip) and recommended massaging it every day. I know it's not the same issue as you're having (mine doesn't hurt, just tickles a bit when she first started massage). Just keep rocking those shorts!
Thanks for all the advice and comfort you give.

 

[marieltha]

I very much appreciate your full and frank updates. Thanks for being an inspiration for people suffering with unanticipated consequences. I wish your recovery had been better. Knees are very complicated, especially as you mention, when the nerves are impacted. Thanks again for all your helpful suggestions.
I had just thought of you while I was icing my foot (sigh), which inspired me to visit BS and I saw your update.

 

[eaglemom]

Glad to read your update. Its very common for one to loose trust in our surgeon's. Sometimes I just wish they'd be honest and not give fluff answers. That's why I LOVE my surgeon, he gets me / my humor and my knee(s). He's been brutally honest on recovery, and I'll be darned if he's not spot on.

That hypersensitivity would be rough to deal with. The way these legs look with all of the surgeries the days of shorts in public are long gone!! I'm glad you've found a way to at least rest at night.

Try to not think about the possibility of needing a TKR. When it happens it happens - enjoy that you've gotten better over time.

 

[RIT387]

Yes, thank you for your frank, informative updates. I wish you had a better outcome....and appreciate all your advice here.

 

[Goma]

I am thankful for all your insight and glad to have found bonesmart. Everyone is so forthcoming and glad to share experiences.

 

[Jockette]

I learned something interesting about ROM this weekend. I injured my thigh on my non operated leg (I overdid things a bit) and I guess it’s my quad muscle that is rather unhappy. As a result of some pain and tightness, I can’t bend my knee near as much as I could before I hurt it, and I normally have decent ROM in this leg.

In the early weeks after recovery we talk so much about ROM, and lack thereof, and we focus on the knee joint and swelling and general soft tissue trauma from the surgery. It seems we’ve somewhat forgotten specifically about the quad muscle that gets quite disturbed during the surgery. The knee most likely gets bent and straightened multiple times, as they test the new implant they installed, which would be the equivalent of overdoing a squatting or sit to stand activity, and that would be another reason our ROM takes time to come back, that quad muscle needs to heal.

Patience, in general, is very important in this recovery. Unless we’ve seen the surgery, we don’t fully understand all that was done during it.