TKR Am not dead!

[Ms.fixit]

Hey there everyone.. Ms. Fixit here..I'm creating a new thread..since I have some questions and haven't had feedback in awhile on the original one.

So! I'm making friends with the Cyborg part of me, but at this juncture I want to be certain I am balancing activity properly with rest. As things stand now, I don't have any bad pain anymore, just achey twinges. I am resting like there's no tomorrow and I am doing about 45 minutes of home PT a day consisting of bike stuff and hanging a weight off the end of my 90 degree bent leg, to stretch out my adhesions. Twice a week I do a Pilates based barre workout with the full endorsement of my doctor.

BUT! I just cannot go one millimeter past 90 degrees and it's been 3 weeks since I reached that mark. When the interior knee compartments get puffy, they impinge my sural nerve which creates epic pain down the side of my knee and calf. At that point, I revert to just ice, elevation and rest til everything calms down again.. I know in the OR post op, I had about 125 flexion, so any adhesions are brand new and not from the previous operation.

What's the best way to proceed? If I do too much lying around at nearly 3 months will I mess up my progress and backslide, or maintain what I currently have in the way of ROM?
I've read the "It's never too late.." posts in the Library, as well as all the others, but so far I haven't read many detailed accounts of 3 months or longer in terms of the healing process and activity. don't get me wrong..I'm ALL about taking it easy..I just don't want to err too far in one direction!

 

[Jaycey]

Hi Msfixit! I am not a kneesie so I'm going to tag my colleagues to get you input on this. referee54 bottomshollow Josephine Hang in there - someone should be along soon!

 

[Ms.fixit]

Thanks so much Jaycey!!

 

[Ms.fixit]

Also, while I await feedback, I wanted to report that I got a wonderful letter from my Hospital last week regarding the lapse in my pain management protocol the day my femoral block was removed. (I sent in a very detailed survey response to patient relations after my discharge).
They had a meeting about my issue 2 weeks ago with the Chief of Surgery, my surgeon, and the 12th floor orthopedic staff, and as a result have made changes in protocol, to ensure it doesn't happen to anyone else! Nice, huh?

 

[Jaycey]

Well done! I know it's hard to follow up when you have had a bad experience. But your input results in changes for the better!

 

[Ms.fixit]

I was really gratified, and it reenforces my respect for the hospital tenfold. I think they may have listened a bit more closely to me than they might otherwise have, because I did my EMS training and ER rotations at this hospital, and brought patients there for nearly 4 years, once I joined the Fire Department. I'm all about patient care, plus I know slightly more than the average bear about what goes wrong in hospitals and why. I have a lot of loyalty to and respect for the place.

 

[bottomshollow]

Ms. fixit, since I have not experienced adhesions myself and have never had problems with scar tissue of any kind, I am going to tag skigirl who had additional surgery because of adhesions and Josephine because of her medical expertise. I am sure that there is something out there that can be done to help your situation.

Take care and keep us posted. We care.

 

[Josephine]

I'm creating a new thread..since I have some questions and haven't had feedback in awhile on the original one.

Sorry, but I need to have your previous 'notes' on hand. I really don't have the time to go a-hunting for your other thread to read up on everything.

I don't have any bad pain any more, just achy twinges

Really? No stiffness, swelling, burning, throbbing, etc.?

I know in the OR post op, I had about 125 flexion, so any adhesions are brand new and not from the previous operation.

Why are you so convinced you had adhesions? The loss of ROM is much more likely to be due to swelling. You did read this Swollen and stiff knee: what causes it?

What's the best way to proceed? If I do too much lying around at nearly 3 months will I mess up my progress and backslide, or maintain what I currently have in the way of ROM?

I'm already thinking you are doing too much and not being 'smart' enough with your exercises. Are you pushing your flexion till it hurts? Adopting the 'must get there at all costs' approach? It's very tempting to do that. Is your knee in fact, swollen or hard?

 

[Ms.fixit]

I did post some of this in my original thread, over a week ago and didn't get responses, so.....here's a recap( i think I was just merged anyway, so initial entries will be here.)

Nope burning, no throbbing, no visible swelling, except compartmental, and the sural nerve burns when aggravated, but down the side of my calf, starting at the fibula head.

PT and surgeon informed me of my adhesions and pushed for MUA early on ,starting at 6 weeks, which I have refused.(Plus I had them from open-joint 42 years ago, so I remember what they felt like and what it felt like to work though them then.)

I have indeed read every single article in the archives and the library, and most of the individual threads as well..including the articles on swollen/stiff knee. Call me the medical sponge. I love to read up.

My knee has a small very 'free-moving' area of ROM and then a segment that is stiffer and needs a few seconds to settle into a final 7 degrees or so of ROM.

I don't do anything that hurts with my PT..nothing, I simply do it regularly.I don't force it or make it hurt. I am pretty much iced and elevated about 16 hours a day.. except when I am doing PT, or some minor house stuff.( I really don't have much energy yet, so overdoing it is not really an option even if I were thusly inclined!) I work from home (when I work at all) and it's too icy to go out and walk in the real world here, so I'm reasonably certain I haven't overdone anything. As I said..I am fine with resting..and getting more proficient at it by the day!
What I am taking away from the gist of your questions though, is that the mild pace is not doing me any harm?

 

[skigirl]

Let's see at three months you are at 90 rom? Your OS has suggested a MUA for adhesions, but you do not want to do that . . . so, you are wondering if you just keep working will you eventually get to a reasonable rom?

This is really beyond my particular knowledge---when my doc suggested surgery for the adhesions in my left knee I agreed with him that my knee needed the surgery.In my case, the surgery was very successful.

I know that referee54 talked about working through his adhesions. And Campervan had a very slow time to regain her rom due to quad lag.

For you, I am just not sure, but, personally I would not be happy to be icing 16 hours a day at three months---I think you should make an appt with your OS and listen carefully to his advice.

 

[Ms.fixit]

Hi Skigirl; I have a visit scheduled with my OS for the 3rd week of April . He gave me the go ahead to proceed on my own when I saw him 4 weeks ago. He learned about my bodybuilding history and also how I dealt with my first set of adhesions with my first surgery, and decided to let me have my way.
Really, the 16 hours a day of icing and elevating is exhaustion and unemployment, not the knee's lack of function. I have fibromyalgia too and it is especially debilitating when I am working with any kind of injury, so if I overdo even a bit, body pain lays me out flat.
Thanks very much for your feedback!

 

[Ms.fixit]

I'm going to take Jo's implied advice to back off a bit on my PT and see if resting the joint for a couple days gives me any more freedom of movement. Thanks for weighing in Josephine.

 

[Ms.fixit]

Getting back to Jo's question about swelling and my knee, I decided to measure my knees last night and the new one is still almost 2" bigger than the real one, as is the calf on the operated leg..so yes I still have swelling! Mine is most pronounced where the spacer and tibial platform are. I'm guessing this is a good part of my limited ROM at this point and not adhesions. I'm just at 12 weeks now and my ROM has been static for probably 6 of them.

 

[Ms.fixit]

Mrs. Knee has asked to b introduced to the forum. Here she is at the 8 week mark, excitedly trying on new shoes,of which she has been deprived lo, these many years. https://bonesmart.org/forum/data/attachments/10/10751-ae7e61c16d5845137db4bdaec640bb3e.jpg

 

[bottomshollow]

LOOKING GOOD!!!! Gosh, you better watch out---there are those of us who would kill for such nice slim legs!!!!

 

[Ms.fixit]

Thank you, Judy! I wish I could rent them out sometimes, just to get a break..I'm sure you know the feeling. I was a young dancer before the early injuries took me out of play, and the structure was established early in life, so I have continued to benefit. I can't quite wear the groovy shoes just yet, at 12 weeks..but soon! I spend all my spare time on Zappos, salivating in anticipation.

 

[Ms.fixit]

Yo! Update time.
So, yesterday I took my longest walk yet..a bit over 2 miles! It felt epic and wonderful, but about half the way home ,even though I had plenty of energy, the knee started to get tight and stiff, so I obviously overdid it a bit. Today it's about halfway back to normal.
As usual I am not certain if I ought to be doing any 'pushing' for ROM..not that I am. I do some stretching past the comfort point at night, some pedaling to give it a good stretch..and it just stays at 90. I do hope to make it past that..that toilet seat is just a bit too low and I have to kick out the operated leg as I lower onto things of that height..and if stair risers are steep, I have a hitch in my hip as I descend. Time will tell, I guess!
I wonder when it will stop swelling after exercise?

 

[Ms.fixit]

Wahhh! I want to be all better now! I'm tired of this. Grrr and woe.
What week is this..I think I have just entered week 14 and sometimes I wonder If I'll ever make any more discernable progress..I've been in a holding patterns for weeks and weeks.
I'm still going down and up the stairs in our old farmhouse on a kind of sideways/diagonal slant because the antique stairs are steeper than the new ones. It gives me a nice stretch, I have to use the stairs a LOT each day..and yet I remain at a stubborn 90 degrees ROM. The eternal 90. Okay, maybe I'm at 92 on a good day. I don't even mind that, or I won't if the stiffness and nerve pain along my fibula and calf/shin ever subside.
Still keeping activity to some walking, some bike pedals at night and once or twice a week, either weight training or a Fluidity intermediate session. I did some light leg extension work on the quad machine, but it is too soon I think..too much post training stiffness.
If I sit still and don't move, or if a large crane places me in a standing position, I feel pretty good, though.

 

[SadKnee]

Ms Fixit,
I commend your bravery for standing up to your Doc. But, try to maintain a open mind on whatever might help your recovery as well. Fear can lock you into a path that could in fact impede your ability to gain the range you want. You talk of the control group..........In my case I did have that comparison. I had my left knee done first and the recovery was typical and uneventful. Through rigorous PT on my part, I was able to achieve excellent rom in an acceptable amount of time. Feeling very relieved, I was looking forward to my right knee TKR just 30 days later. For reasons, still unknown........same Doc, same procedure, same everything......Completely different outcome. Lots and lots of pain, zero ROM, swelling, more pain, etc etc. I tried and tried, fighting the pain, determined to improve mobility......for weeks. All the while the first (left) knee just kept improving, virtually without effort. I tried doing nothing......to ease the swelling.....I tried formal PT......home PT.....ignoring it.....nothing helped. The answers I got were..."It happens sometimes.....we don't know why". So after a couple of months of very slow improvement, I opted for the MUA. I was worried it would put me back to square one and might cause even more scar tissue....(ya know, you dwell on all the negative stories). It went very easy.....In at 9am....done by 10 and in PT at 10:30. The procedure was like a non event. However, I did realize and immediate improvement in ROM. The PT pain was still lingering, but PT continued to accomplish much more improvement. I am at almost two years now post op and I really don't give my knees much thought as I go about my day to day. While my right progressed more slowly than my left, it did eventually catch up and is now fine.
Can I conclusively say the MUA made that possible......No. But would I do it again. Absolutely
My thoughts for you.........keep an open mind. Don't be too quick to write off any options available. Good luck.

I am fighting desperately for ROM and this post was very helpful to me as my surgeon wants to do a MUA and I want to wait a few weeks. Three weeks ago I was at 60 and I am at 80 now if I can only get to 90 but it is not happening. Thanks Recycled and Ms.fixit for posting so I don't feel like the only one going through this.

 

[Ms.fixit]

Hi Sadknee!.and Recycled..bless your heart for your nice post, which I seem to have entirely missed when you initially wrote it..I apologize for not responding promptly.
To address Recycled first..I so appreciate you sharing your experience with me in detail..all this information helps going forward and I am keeping as open a mind as I can!

I'm sticking with my current course so stubbornly for 2 reasons;..the most compelling right now being that I just do not have any more stamina for pain and suffering. My post op pain management had a serious mistake/omission, which the hospital has since implicitly admitted, by reviewing my case and deciding to change their systems so that this doesn't happen to anyone else. The severe pain I endured and the extended period I had to endure it for, both in and out of the hospital,plus PT so aggressive at one point that I passed out, have left me with no strength to endure anything else. That's just me. I am a recovering alcoholic with seven years sober, and I need minimize trauma if there is an option to do so, and to watch my sobriety, always. The idea of going from the OR to PT the same day again, and having to beg for pain relief if it isn't enough, is just too much. I just want to be left alone at this point and get better quietly.

The other thing,which may sound odd, is that I really trust my intuition, because it has never steered me wrong, ever. It has literally saved my life in the past, so when it says NO MUA, I listen!

Lets say, worst case, that I am mistaken. I still have 90 plus degrees ROM, and eventually the stiffness and nerve pain will abate. (i had a week awhile back where it felt fine..I actually told Josephine I had no pain, but then it came back). I had terrible post-op adhesions in the 70's and my leg was stuck at about 75 degrees ROM. I also had lousy extension. I never got great extension, but over the following 18 months ,after leaving PT, I got to 125, just doing exercises in my dorm room after class, and schlepping around with 25 pounds of art supplies everywhere.

Yeah, so, each according to their ability to cope. I find the fact that I have the choice liberating, even if I fret about my progress as much as the next person, and on days like today, I want to just put the leg in the closet and have the day off from it!