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Bilateral TKR BTKR- bionic woman

I was doing well until about an hour ago. It's like the PT caught up with me. Staying on schedule with pain meds and ice. I truly wish Incould just take something and zone out for the night. That won't happen though as I must take pain meds every 3 hours and with the pain as intense as it is, who knows if/when I will fall asleep.

I reached out to my dr office (they check in with me daily online) and I mentioned the pain increasing to a high level with any activity and essentially the response was "you're one week out of surgery. It's expected".

Let me just share that the pain I've felt post surgery has been much higher than my surgeon and I agreed upon. I get that I don't have a high pain tolerance and pain meds don't zonk me out. I get that they perhaps underestimated what I meant my that pre surgery. But I'm starting to wonder how I will do this long term with this break through pain.
 
Hi Aspenglow, I also had a lot more pain early on than I had expected, as I thought I had a high pain threshold! The pain medications I was given did not seem to get through to lower the pain to a manageable level the first 3 weeks, and I also had painful muscle spasms. It took me 2 weeks to get through to the OS office to get past their gatekeepers, and to explain that I had alot of pain trouble, and was unable to sleep. Despite calling the OS' office several times over the 2 week period, I was dismissed and not "heard"....which was very isolating. fanlly went to see my PCP, and she told me to tell them SHE was demanding that I see a knee specialist within the next few days. When I did so, I finally got through to the level 5 gatekeeper who changed my meds.

If you can't get anyone to hear you out, then I suggest you see if you can get someone else, not yourself, to be an advocate for you and contact your doctor to ask them to consider modifying the medications you're getting, explaining that your pain levels are at a (choose your correct number on the pain scale) and you suspect there might be something else that might work better. I suggest an advocate because I didn't have one and suffered far longer than folks who did!

Good luck and do let us know if you can get them to finally respond... I think the OS office I had do my knees really don't want to deal with the people part of the "business", just the bones and muscles! But, we need to keep on them to remind them there are people attached to said knees! I'm sending you support and encouragement since I went through a similar thing!
 
Have you tried icing through the night? Many members have found icing throughout the night helped with that night pain. Also, what pain meds have been prescribed for you?
 
Maybe cutting down on your activity and pt will help lessen that pain. Many of us never even did pt and the outcome has been great without having to go through all that pain!
 
I agree with sistersinhim. Try cutting back in the exercises, icing and elevating as much as possible and limit your activity to short trips to the bathroom and to the kitchen to grab a drink or snack.
 
All...I am at day 11 post op....the OS office refilled the dilaudid.....however...they increased the time to take it from every 3 hours to every 4 hours. It still stays 1-2, but the RX is only for 60 tablets instead of the 90'on the original dx script when I left the hospital. Just because I'm ridiculous I went ahead and followed 1 tablet every 4 hours for the past 24 hours...and guess what. My resting pain is a 5-6 (used to be 2-4). Today I could barely do 2 rounds of PT exercises (supposed to do 4-5).

I'm a logical person.....if the goal is to get ROM...and the way to do that is PT exercises....why would they decrease the pain med that allows me to do those exercises.

I've been crying on and off all day (from the pain.....when it gets high it's how I cope). Ironically every day my dr office has me log into a patient portal and share info about how I'm doing and pain and how important pain management is. What a joke!

Tomorrow I see PT first and then have post op follow up appt with the PA for my surgeon. Have met before and at the hospital. It's gonna be ugly....I have no filter when in this kind of pain.

I will advocate for myself tomorrow. It feels like one of two things 1) they don't believe how much pain I'm in 2) they don't care and follow standard protocol regardless for certain medications. So essentially I'm just a number and not a person.

Another question...my pain is also changing to inner knee deep ache/throbbing. I presume this is normal as I remember reading that the pain changes as the healing happens.

For those that recommended icing....I have an ice machine thingy on each knee nearly 24/7. The only time I'm not icing is when I'm showering or doing my exercises. In fact, my husband changes out the frozen bottled waters midway through the night. I don't think I could handle this without the ice.

Legs are elevated in that they are straight at hip level during the day and at night, but not above my heart. My OS won't allow any pillows for elevation.

Current medications:

Xarelto (for 30 days post op to prevent blood clotting)

Hydromorphone (dilaudid) 2 mg (1-2) every 4 hours, but the script won't last to take 2 at a time.

Metaxalone 800 mg (1 every 8 hours for muscle spasms)

Morphine sulf 15 mg (one every 12 hours)

Duloxetine DR 60 mg 1 pill daily

Tylenol (6 total per day)
 
I know it sounds counterintuitive but the exercises are a part of what is causing your pain. Exercising is not going to help you get better ROM . Your knees need to have time to heal first. I've found this out the hard way. It is very painful to keep your legs straight and not elevate them at all. While you don't want your knees to be bent very far you do need to elevate your 'toes above your nose'.
[Bonesmart.org] BTKR- bionic woman

And here is what activities you should be doing right now at your stage of recovery.
https://bonesmart.org/forum/threads/activity-progression-for-tkrs.14334/

I suggest you give it a try for a few days. You may find that you start feeling better.
 
AspenGlow said:
) they don't care and follow standard protocol regardless for certain medications. So essentially I'm just a number and not a person.
Click to expand...
These PT folks are quite a quantitative lot and are obsessed by numbers. I agree that too much exercise is causing these issues.

Remember, these PT's work for you, not the other way around. Draw that line in the sand and do not let them try to force you to doing something that is counter-productive to your recovery.
[Bonesmart.org] BTKR- bionic woman


This recovery is counter-intuitive to what we have been taught---we have been taught, "hard work will get things done." This is not about working harder---it is all about working smarter.

"Less is more" is what works when you are in a TKR recovery---the harder you work at achieving ROM, the slower, more painful, and more frustrating your recovery can be.
 
Hi aspenglow, I am sorry you are still in pain. When I went to rehab on day 7 after my surgery I was only taking hydrocodone with Tylenol 7/325. I told the rehab dr my pain was a 7-8 all the time. She switched me over to percocet, not sure of the dose, but it did bring the pain down to a 3-5. It doesn't sound like the dilauded is enough for you. I would call someone and ask to try something else! Don't rely on someone checking the patient portal!! I was a very demanding advocate for myself! Not exactly my nature but it was my pain...!
Also, I have two ice machines too, but I did not have them in rehab. While the ice machines are nice, I don't think they get as cold as real ice! If you can put some real ice in two ziploc bags (double bag it so it doesn't leak) then inside a pillow case and try that instead of the ice machines for an hour or two. You may get more relief. And yes ease off on the PT exercise, heel slides and ankle pumps once or twice a day is enough! Get up and walk around a little, to bathroom and back is all! I am a week or two ahead of you. Once you get the pain under control you will do better!
Blessings,
Lene'


Sent from my iPhone using BoneSmart Forum
 
AspenGlow said:
I'm a logical person.....if the goal is to get ROM...and the way to do that is PT exercises....why would they decrease the pain med that allows me to do those exercises.
Click to expand...
I'm sorry you're experiencing more pain. Others have already advised you wisely, by suggesting that you cut back on the amount of exercise you're doing.

Let me reassure you that ROM is not achieved by doing exercises. It happens over time, as your knee heals from the trauma of a massive surgery and as the swelling goes down.
BoneSmart philosophy for sensible post op therapy
[URL='https://bonesmart.org/forum/threads/tkr-work-%E2%80%9Csmarter%E2%80%9D-and-not-%E2%80%9Charder%E2%80%9D.11205/']TKR: work “smarter” and not “harder”[/URL]
TKR: Evidence shows that less really is more when it comes to exercising!
Knee recovery - Lose the Work Ethic!!

Even if you did no exercises at all, your ROM would increase with just the activities of daily living. I know. I've done exactly that for the recovery of both my knees, because my surgeon does not allow any PT for the first month after a TKR. Both my knees are strong; they straighten fully and bend to over 125 degrees.

It's swelling that keeps your knee stiff and prevents it from bending. your knee is like a hosepipe filled with water. The water makes it stiff, so it doesn't bend easily. Get rid of the water, and the hosepipe bends much more easily. The same thing applies to your knee. Get rid of the swelling and your knee will bend.

So, the best way to help your knee to bend is not by doing lots of exercise. It's by helping your knee to become less swollen. Concentrate on reducing the swelling by doing lots of this:
- rest, elevate, ice and take your pain meds by the clock
- if it hurts, don't do it and don't allow anyone - especially a physiotherapist (PT) - to do it to you. Exercise only a little, and do it gently.
 
:goodpost:

ROM cannot really increase until the inflammation and the swelling goes down. As long as you keep up the level of exercise, your knee will still be rather angry and it will stay inflamed and swollen.

It is difficult to do, but try cutting back. I bet that you will see some progress---and remember, progress is all about being patient, as it will be somewhat slower than we would like it to be.
 
Thank you to all that responded. I read this on Bonesmart and then at the hospital the PT were huge on the two ROM's and getting me able to walk up and down stairs. My OS ordered PT 3 tx/week starting the day After I was discharged from the hospital (day 5 post op).

I think my mind just switched over to that being the right thing to do. I'm so afraid of not getting to the right ROM's from not doing the exercises. I've read of people needing to have MUA's because of scar tissue. I had bilateral and I'm 50....I did this for quality of life and don't want to have any regrets. It's so hard to believe that less is more...and yet here are so many of you saying exactly that.

I'm actually walking well with a walker (barely relying on it for balance) and able to go up and down the stairs easier each day (today I even did a few stairs one leg at a time!).

Thank you for this.....I really want a pain free life back where I can walk and be active.
 
AspenGlow said:
t's so hard to believe that less is more...and yet here are so many of you saying exactly that.
Click to expand...
When I went to PT, I noticed that there were two sets of PT's; one set worked with the "athletic recoveries" while the other set worked with joint replacement patients. The two sets of PT's never crossed over.

I thought I was going to try to hit a home run every time I went to PT, but my PT's would reign me in. They also shared the Bonesmart Mantras. I talked to them about my ACL Recovery Protocol, which was back in the '90's. I worked hard then and really beat the curve and the timeline for expectations. They chuckled and said, "This is totally different." They were right. I learned that hard work in a TKR or a BTKR recovery only leads to more pain, more stiffness, and more frustration.
 
It's incredibly early in your recovery to be worrying about ROM. There's no need to rush to get good ROM, because it can continue to increase for a year, or even longer, after a TKR. There's no "magic" window of opportunity, by which time you have to achieve ROM, or else:
Myth busting: the "window of opportunity" in TKR

PTs are a quantitative lot and they often get obsessed with ROM numbers. That doesn't mean that you have to join their numbers game. As long as you have enough mobility to get around your house and can manage a few steps, that's all you need at first. The rest will come, with time.

You won't fail to get ROM if you cut back the exercises. Also, you won't get "scar tissue" - they really mean adhesions - if you don't exercise. Adhesions are actually very rare and few people develop them. They aren't just waiting to pounce if you don't exercise enough.
In fact, you are more likely to develop adhesions if you exercise too much. That's because too much exercise causes angry, inflamed soft tissues, which then get hot and dry. Dry tissues are more likely to develop adhesions.

Your surgeon may be in favour of intensive PT, but my advice is to only do as much as your knees tell you they are happy to do. In the early days, it really is more important to spend lots of time resting, icing and elevating, so your knees get the best conditions to heal. One of our members was told this by her vet, after her little dog had knee surgery: "Tissue at rest heals the best." (Thank you for that, @Freedom ) I think it's true of us humans as well.
They are your knees and you are the one who has the right to say what happens to them.
Saying no to therapy - am I allowed to?
 
I am 5 weeks out and completely mobile, without any aids. I listened to the folks here and have not had any PT. I immediately got up and walked, whenever I could,but rested most of the time, elevated and iced. I,too, was willing to do the aggressive PT thing but I am glad I did not. I intend to start doing leg exercises at the gym next week- which will be 6 weeks out, but I will take it very slowly. I definitely believe less is more...
 
Hi Aspenglow, as Celle and Leone suggest, it's really too early in your recovery to be worried about ROM, adhesions, etc. I was also threatened at my 6 week OS visit with a MUA if I wasn't regaining ROM, but my flexion is increasing now gradually but certainly and I'm at 4 months.
It really annoys and angers me when docs decrease pain medications before someone has even gotten over the hump! The medications need to limit your pain so you can begin to be able to get around even if only slowly at first. It makes no sense to me, either why they think they know what your pain levels are! Grrr! As Lene said, she became her own advocate, so if you can summon the moxie to do that for yourself, great! I was not able to do so for myself for those first 2weeks since my pain was pretty bad, a 7-8. Alas, I can advocate for others easily, but not so well for myself! I hope you are better at it than I was! I did finally get a pain regimen that worked for me but it was not what they had initially prescribed for me. On this forum, I found out about a drug called Tramadol and that, with muscle relaxer at night, finally helped me get some sleep. When I was able to sleep finally, the pain began to lessen.
I'm so sorry your pain is so high, but I do hope you can call and get past the gatekeepers to a patient advocate that will talk to you about medication options for pain!
 
AspenGlow said:
It's so hard to believe that less is more
Click to expand...
But it is, nevertheless, so.

Think of exercising a sprained ankle, or a broken leg, to attempt to heal it. Laughable, isn't it? Same thing with your knee, it's damaged needing healing, not unfit needing training.
 
AspenGlow said:
I'm so afraid of not getting to the right ROM's from not doing the exercises.
Click to expand...
That will not happen. Think not of 'exercising', which implies stress and strain and huffing and puffing but of 'stretching', which implies slow gentle painless moves just to put the joints through the movements.

Look here https://bonesmart.org/forum/threads/rom-and-extension-stretches.13159/ and scroll down to the flexion stretches to see how simple and straightforward it can be (there's loads of different ways to do stretches, of course).
 
I've had 11 knee surgeries. 5 on left and 6 on the right. I never did PT but one time at the hospital after the very first surgery. The in the hospital therapist on day 2 caused my knee to bleed inside and out. That was the last time I had PT. So, with 11 knee surgeries I speak from experience. You do not need PT. Just use your knees daily. They will strengthen on their own when you need them to. And they won't scream at you in agony like they do when and after taking PT. I am not lazy, I just know my body. Yours is the same. You need your knees, so you use them. Each step you take is therapy. Every time you sit down then get up is therapy. Going to the bathroom, therapy, getting a drink or a snack, that's therapy, too. You are doing way too much and keeping those knee tissues angry, inflamed and swollen. How can those tissues, muscles, tendons, etc. heal when they are being stressed like that. Give yourself a month off of all exercises, just use your knees as you can. You will see a huge improvement in your range of motion and lessening of your pain. My tkr was 5 months old Wednesday. I have 132/0 ranges without agonizing pain. You will too if you lay off of the exercises.
 
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