PKR My Drama Queen Patellofemoral Knee

[Jockette]

I understand where you are - It is difficult to feel better if there is fear in the back of your mind that something is wrong. I can't tell you how many times I have said to myself, "this just can't be right".

Yes, that’s just how I feel!

I, too, am hoping time is what it needs.
One can hope, right?

@Celle If my X-rays look good next month should I request some other test if my surgeon doesn’t suggest it? And if so, what? What else would show if the implant is loose.

 

[Polkadot]

Hi, Jockette,
I drove an hour and a half to my original consult, surgery, and follow-ups because my OS was deemed to be “the very best.” At our first appointment, he encouraged us to seek additional opinions or consultations if we desired. He talked about how he often is consulted when there are complications from initial surgeries, and that people come from quite a distance away for that, including flying in from other states.

So, if you can manage the trip(s), I encourage you to seek opinions in Philadelphia or Baltimore. You are not alone in traveling a distance to obtain the best results that you can get.

 

[Celle]

@Celle If my X-rays look good next month should I request some other test if my surgeon doesn’t suggest it? And if so, what? What else would show if the implant is loose.

I'm going to ask @Josephine to answer this one for you.

Quite honestly, I'm not thinking that the implant may be loose, but that there is something else that needs attention - and that's why I think you need a second opinion.
If your current surgeon is a PFR enthusiast, he may not identify your problem.

 

[Jockette]

I just went back to some of my posts and tagged Josephine so she could easily find the info she needs. Thanks, Celle!

 

[sistersinhim]

I hope you hear from her soon. I know you want some answers!

 

[Jockette]

@sistersinhim Thanks. No hurry though, it’s not an emergency.

 

[jaschembra]

I don’t know if Josephine will have any test suggestions for you as I had tagged her (12/30) before my 1 year appointment, asking for any additional questions/tests I should ask about and she didn’t provide any. I will look forward to seeing her suggestions for you. I consider making an appointment on a weekly basis for a 2nd opinion but I never do anything... as Pokadot said, you may need to travel to get the best. I sure do hope you get some satisfaction during your 1 yr appointment {{{hugs}}}. When is it by the way?

 

[Jockette]

My appointment is March 13. I honestly don’t expect much from my surgeon. I really don’t even want to bring up the issues with him, but I should at least let him know that not everyone has a text book recovery.

And maybe, truly, there won’t be anything he can do and we just have to wait it out.

At most appointments his assistant comes in first to talk to me about how I’m doing. She’s not a PA, more like his personal secretary. She’s always been very nice to me, and even called me the Friday evening before my Monday surgery, just to check on me to see how I was doing.

At my 7 month check up I told her how I’d had a set back at 4 months post op, for almost 2 months, due to that visit to my friend’s house and the struggle with the low toilet all weekend. I told her some things I was still struggling with 3 months later. I asked her if that was normal to have struggles at 7 months and she said no. I didn’t believe her, I’d read enough Bonesmart to know some people do have more struggles than others and recovery takes a year. Her first response was “did you go back to doing your exercises?” I told her no, I didn’t.

I thought it was interesting that she said “go back to” and not “still”. No one in that office ever implied I could stop the exercises. ( which I did at about 4 weeks post op)

But anyway, she was not as understanding as I thought she would be. I was hoping she’d say it’s a long recovery with ups and downs. She did not. It made me feel like they only like patients who don’t have any problems. (like there are any of those!)

My surgeon was surprisingly understanding that day about my set back.

So, as usual I am already tense about this upcoming appointment and I expect them look at me like I’m crazy. Or disappointed that I am one of THOSE patients.

 

[phrog]

Nothing to add beyond what others have said, Jockette. Just want you to know I am thinking of you and hoping someone somewhere can help you feel better! This getting older is not for the weak of heart.

 

[Jockette]

Well I had a pleasant surprise today.

I usually don’t try to move my foot back while sitting to see if my bend is better. I can tell that it’s easier getting in the car, and clearing the leg of the table that my sewing machine sits on, that it’s getting better, so I don’t feel I have anything to prove at this late date with my bend, so I don’t test it out anymore.

However, this morning I noticed that my foot was way past the previous lines on the floor that I was using.

I was so excited!

So in spite of all my current concerns, there is still healing and improvements.

On the other hand,

We went to visit our son and his wife today. It’s about a 90 minute drive. No place there to comfortably sit with my leg decently elevated, then the 90 minute return drive home.

My knee is now quite unhappy and actually hurts some. It was a little uncomfortable in the car today which it hasn’t been until the last few days. And it didn’t appreciate not been up higher for 7 hours.

But at the moment I am back sitting “in my spot” and it is settling down. This is the only place I can sit totally comfortable. Such a drama queen.

 

[sistersinhim]

Yay, increase bend! See, it is still improving. Holding the leg down is understandable uncomfortable when it's done for a long time. I even have a step stool up in our choir loft at church, that I elevate both of my legs on. I'm finding I can bend a little longer as time goes on, but am not ready to try it for an hour yet!

 

[Jockette]

I read (again) the article about PFPS and this section caught my eye:

~~Lastly a maltracking patella has also been associated with PFPS. What studies have observed is anatomically those who suffer from PFPS have a hyperinnervated (very inward folded) lateral retinaculum (a membrane in the knee).

Furthermore, these subjects presented with more hypersensitive fibers within the nerves.

The theory is the patella tracking medially (usually) will produce tension along the lateral retinaculum. Now the nerves are put under traction and start to experience myxoid (phlegm-like) degeneration. In an attempt to heal itself the body produces more neural drive and stimulation to that area thus creating a hyperinnervated structure and pain is produced.~~

Is this saying the nerves in this area are more stimulated?

Do you think this might be why I’m so sensitive to pants and why my knee feels so weird when I lean forward? I really wouldn’t call it pain as in “ouch” but I guess weird/uncomfortable could be a form of pain.

 

[4quilts]

I agree with the others. I would go to another OS. It would be worth going to Philadelphia or Baltimore for the second opinion. I have heard great things about the Rothman Institute in Philadelphia and, of course, you can't go wrong with Johns Hopkins in Baltimore.

I cannot stand my quilt on my knee yet. I use a very light weight, very soft throw. I roll a towel and put it by my knee and basically tent the throw over the knee so it does not touch it.

 

[jaschembra]

When you mentioned the words, more stimulated... I made me think of what my OS said to me when prescribing the Gabapentin. He said sometimes the pain nerve will have been firing for so long (I have had chronic pain for 3 years now) that even when something is fixed (my TKR), it doesn't take hardly anything to set it (pain nerve) off. Thus the help of Gabapentin to "reset" my pain nerve. I am still experiencing discomfort/pain, but it's not as bad. I have a tendon that is really messing with me lately! It's on the medial side. Did you end up or think about checking with your general doc regarding medicine?

 

[Jockette]

I have not asked either doctor yet about gabapentin or lyrica.

I have what I’m pretty sure is a nerve issue in my right foot, the non operated leg. It started as a little twinge in my second toe in the spring of 2013. Then I had what felt like a pebble in my shoe, a classic sign of Morten’s Neuroma, then the discomfort spread along the bottom of my foot from the size of a pebble to most of the length of the bottom of my foot. It felt like a cord twisting. Other toes became affected. Just putting a sock on upset my foot, as did a shoe. The ball of my foot became very painful when I walk barefoot on a non carpeted surface. Today when I put a sock on it feels like my foot swells but it is not visible.

I found sandals at the Walking Company made by Abeo that have a built in orthotic with a metatarsal footbed that my foot accepts.

All this to say that I suddenly realized the other day that my knee is doing the same thing. But it’s my left knee and my right foot.

Shortly after my foot started to bother me I went to a foot doctor about it. I saw him 4 times within a year and a half and nothing he did helped. Shots in my toe joints (2 different times) a very expensive compound foot cream, finally gabapentin.

He finally asked if I had low back problems and I said yes. He sent me to a neurologist who told me I’d had it for almost 2 years and if it was anything serious it would have become serious by now and that I was overthinking it. He wasn’t surprised the gabapentin wasn’t helping as I was on a very low dose. He suggested I increase it but I was leary of taking it, had some hassles with the insurance and I was getting ready to move from Ohio to Delaware so I stopped taking it.

So. This over sensitivity with my knee seems to be similar to the undiagnosed issue in my foot. No dr knows what to do with my foot, 2 different chiropractors have not been able to help.

My chiropractor calls me an enigma. Yay me.

 

[sistersinhim]

I really know nothing at all about nerve pain except for the zingers that I had and still have in both knees. I pray that you will find an solution to your pain. That's why you had this surgery, to get rid of the pain!

 

[Jockette]

I had the surgery too early. I traded some pain for more constant discomfort now. I can’t relate to those of you who say post op pain feels better to pre surgery pain.

 

[Jockette]

I now wonder if the discomfort I get when leaning forward is a patella issue.

 

[liam2015]

Jockette ~ i am so sorry for all the pains you're having and no satisfaction from the "partial". your foot problems remind me of my friend's issues. she has severe sciatica to the point of nerve damage, which presents right down to her foot with similar symptoms as yours (feeling of pebbles). however, she is able to walk a lot (shopaholic) and has always had lots of energy. she reluctantly takes Lyrica and blames it for side effects. she also sometimes takes sleeping medication as she is very high strung with insomnia. we just got back from a girls' vacation to jamaica. she complained a lot about her hip.

i hope you can get to the bottom of this. all of our body parts are connected ~ seems when one thing goes wrong, other things follow suit.

 

[Jockette]

I don’t have any siatic pain, thankfully.

Just a weird foot problem no one knows what to do with.

And an uncomfortable knee.