MUA On the other (dark) side and struggling!

[Arielyn]

Hi..quick(ish) background and a question if I may?

• 56 years old, F, RTKR 10/29/19
• osteoarthritis
• low pain tolerance
• high opioid threshold
• baseline before surgery 15 mg. morphine 3x per day
• current meds 30 mg. morphine 2x per day and oxy 10 mg. 3x per day (for one week)

Now you have the highlights! Lol. After my 10/29 surgery, there was some misunderstanding between OS and pain management doctor, so I was in bed in excrutiating pain for the first twenty four hours with only my baseline meds. Once the misunderstanding was corrected, I was sent home on day three with outpatient PT and a handshake. I think the only person to miss me was the window washer I apparently flashed when they finally gave me significant pain relief. At any rate, once home, my OS wanted me to use the PT in the hospital where their offices are also located, but they couldn’t take me until Dec. 5. Home PT moved me around some, but not nearly enough I guess, because by the time I started outpatient, my ROM was around 60, ext. -12.

By my six week check (one week and three PT sessions after starting with PT) I hadn’t made any gains, or at best minimal, so I was scheduled for an MUA which took place two days ago on Wednesday, Dec. 18. Dr. snapped a pic of moving me to 125 (not the best viewing angle for photos), had anesthesiology put in an On-Q Pain Buster and sent me straight from recovery to PT, where the therapist pushed me to 75 and tears. PT yesterday took me to 80 (with fewer tears) and today was 85 (with just a dribble). I’m a little disappointed that I can’t get what the doctor did with my flex, but my knee swelling has added an addition 2.5“ to my already substantial tree trunk legs. I’m trying to be patient. CPM is getting to 105.

Last night my On-Q started to leak, so I woke my very “unhappy” OS’s PA at midnight in a panic. I was instructed to wait til morning and call the office. I did, and the OS said just to remove it. I closed my eyes and did. Now, 12 hours later, I’m miserable. Not only is the pain in my knee fairly substantial, but the pain at the On-Q entry site is GNARLY BAD. it feels like someone just continually threw connecting right hooks to my thigh.

So...pain in the thigh normal after an On-Q removal? I’ve scoured the web looking for that question to be answered, but all removal docs are unicorns and rainbows about how easy it is to DIY the removal. I hate to call the PA again—and I think he would rather I didn’t. Just looking I guess for some reassurance. And if anyone feels inclined to offer feedback about the frustration, ongoing pain and depression that has accompanied this journey, that would be greatly appreciated as well.

Glad to be here, and hope no one minds me crashing the party—though I kinda wish I wasn’t on the guest list to begin with! ;)

 

[Helizabug]

Someone with more help than I can offer will respond soon, but just know you’ll get some good help here. I hope you get better relief soon, too!

 

[InkedMarie]

I hope things improve for you. You have the sense of humor (flashing the window washers lol) which will be a help!

 

[Arielyn]

I hope things improve for you. You have the sense of humor (flashing the window washers lol) which will be a help!

No word of a lie. My sister brought a little ghost to the hospital for my room door. He was holding a sign that said “BOO!”. When I left and took him down, I noticed someone had changed the exclamation point to a ”B”. Clearly my drug-induced escapades were not kept under wraps.

 

[Celle]

Hello @Arielyn and to recovery.

It's a shame you didn't find us back in October, when you had your TKR. WE would have advised you that there's no need to rush to get ROM (Range of Motion) because it can continue to improve for a year, or even much longer, after a knee replacement. There isn't any deadline you have to meet:
Myth busting: the "window of opportunity" in TKR

Also, it's not exercising that gets you your ROM - it's time. Time to recover, time for swelling and pain to settle, and time to heal. Your knee has the potential to achieve good ROM right from the start, but right now it's prevented from doing so by swelling and pain. As it heals and the swelling goes down, your ROM (both flexion and extension) will gradually increase.

It's a pity your surgeon was impatient, because you might have avoided having the MUA if he had been prepared to let your knee take the time it needed.

However, what's done is done, so we'll take it from there. Your knee had been wounded twice now once with the TKR and once with the MUA. It needs gentle treatment and a gradual progression of exercises, not a rush to get ROM fast.

Use the CPM machine to move your knee gently, but don't use it to force your knee to bend. Your knee simply can't bend more until you can get rid of some of that swelling.

I'm sorry your thigh is so sore from removing the On-Q. That should settle, but you can try soothing it with ice, which is a great pain reliever.

In my next post, there are articles that tell you how to ice and elevate your leg, as well as lots of other helpful articles.

 

[Celle]

And here are the promised articles:
Knee Recovery: The Guidelines
1. Don’t worry: Your body will heal all by itself. Relax, let it, don't try and hurry it, don’t worry about any symptoms now, they are almost certainly temporary
2. Control discomfort:

rest​

elevate​

ice​

take your pain meds by prescription schedule (not when pain starts!)​

don't overwork.​

3. Do what you want to do BUT

a. If it hurts, don't do it and don't allow anyone - especially a physical therapist - to do it to you​

b. If your leg swells more or gets stiffer in the 24 hours after doing it, don't do it again.​

4. PT or exercise can be useful BUT take note of these

the BoneSmart view on exercise​

BoneSmart philosophy for sensible post op therapy​

5. At week 4 and after you should follow this

Activity progression for TKRs​

6. Access to these pages on the website

Oral And Intravenous Pain Medications​

Wound Care In Hospital​

The Recovery articles:
The importance of managing pain after a TKR and the pain chart
Swollen and stiff knee: what causes it?
Energy drain for TKRs
Elevation is the key
Ice to control pain and swelling
Heel slides and how to do them properly
Chart representation of TKR recovery
Healing: how long does it take?

Post op blues is a reality - be prepared for it
Sleep deprivation is pretty much inevitable - but what causes it?

There are also some cautionary articles here
Myth busting: no pain, no gain
Myth busting: the "window of opportunity" in TKR
Myth busting: on getting addicted to pain meds

We try to keep the forum a positive and safe place for our members to talk about their questions or concerns and to report successes with their joint replacement surgery.

While members may create as many threads as they like in a majority of BoneSmart's forums, we ask that each member have only one recovery thread. This policy makes it easier to go back and review history before providing advice.

 

[Sara61]

Although i can't help with your queries, just to let you know there is always someone on BoneSmart world willing to listen, banter and generally offer support.
Each and every one of us is different some heal faster and others slower but if you read some of the posts this recovery can take up to a couple of years. Don't despair you will get there xx

 

[Arielyn]

And here are the promised articles:
Knee Recovery: The Guidelines

Can I tell you that I am lying here, in excruciating pain from the removal of the On-Q, as well as the after effects of three straight days of intensive PT following MUA, and sobbing after reading your encouraging words. Since my RTKR in October, I’ve felt like a complete failure. I’m pushing to do all the things my doctor and PT are telling me to do, but my gains just aren’t making my OS happy. When I went in for my four week check, the PA pushed on my knee and bent it so far that I screamed. He did it slowly, looking me right in the eye. I begged him to stop twice, and he just kept pushing. When he finally relented, I was wailing and immediately turned in on myself. I felt violated. It was one of the most painful and humiliating moments of my life (and I’ve had three c sections in a teaching hospital!). At that point he told me that if I didn’t step up and push through the pain that I would end up with a “peg leg” and be “crippled for life”. I don’t think I’ve ever felt so despondent and utterly hopeless. I couldn’t even speak.

To now hear someone say that I’m not a failure—that it’s ok not to be at 120, and that it’s OK to be in pain after the On-Q removal—that those things don’t make me somehow “less” is the most gentle and wonderful thing I’ve experienced in almost 8 weeks. Without making myself sound like an overly needy woman with issues (though I may be both of those as well), you have given me hope and a reason to want to get out of bed tomorrow. I haven’t had one since this all began.

To say thank you isn’t nearly enough. I want to give you a big hug and somehow show you a snapshot of where I was when I posted. In spite of the humor, it was a cold, dark place. So although it’s completely inadequate, thank you. Thank you. THANK YOU. I don’t think you will ever know the difference you’ve made this evening.

I’m off to read every single article you sent to me. I have no idea how I found this page other than a random link during a Google search, but this is exactly where I needed to be at exactly the right time.

 

[sistersinhim]

You will benefit from all our experiences. We know that slow and gentle is the way to gain ROM and heal with less swelling and pain. Don't try and force your bend or extension.

You are the boss of your doctor and PT. Don't do anything that hurts and never let anyone push or pull on your leg. Your knee should never be made to do anything painful. That slows down your recovery by causing inflammation. Inflammation causes swelling and pain. That's counter-productive.

Stay here with us and we'll help you the best we can.

 

[Celle]

I am so sorry to hear that your surgeon and his PA bullied you like that.
It just isn't acceptable or professional behaviour. You have every right to feel violated and I feel so angry with them for treating you like that.

Please don'gt ever let anyone do that sort of thing to you again. It's your body and your knee and you are the only one with the right to say what happens to it.
No means no in a doctor-patient relationship, just as much as it does in a sexual context. If anyone does anything to you when you have asked them not to, that person is assaulting you.

What the PA said to you was not only unkind - it was also untrue. Do not let him touch you again - ever.

I know it's hard to be assertive when you're recovering from major surgery, but you'll need to do that. no one but you has the right to say what happens to your knee. Other people may offer advice, but you have the right to choose whether or not to accept that advice. You are the boss of your body and your knee.
CONSENT: what it means and how it can be used
Saying no to therapy - am I allowed to?

I recommend you don't go to PT until your leg and your knee are calmer, less painful, and less swollen. Instead, concentrate on getting lots of rest, ice and elevation. Just walking around your house is all the exercise your knee needs right now.

Don't stress about trying to please your surgeon. Let your knee take as much time as it needs. You don't have to -please him - he has to please you. After all, who's paying him? You and your insurance company.

 

[Celle]

Here are a couple of histories from people whose ROM development was slow, but who got there in the end:

This is what Campervan wrote about the slow development of her ROM. As you can see, her flexion continued to improve for a long time.

"I had a slow recovery. Here's my flex measurements at various points:
92 - 8 weeks post op
105 - 10 weeks
107 - 5 months
110 - 6 months
112 - 7 months
116 - 9 months
119 - 11 months
118 - 1 yr
120 - 1yr 2 months
125 - 1 yr 8 months
128 – 6 years "

And this is from bertschb:
"I'm 12 months out from my surgery and have some advice based on my experience:
1- Stop going to PT (all it will do is make your knee swell and reduce ROM)
2- Don't worry about your ROM
3- Be patient - VERY patient!!!

Here is my ROM history (more or less):
1 month - 60 degrees
2 months - 80 degrees
3 months - 85 degrees
4 months - 90 degrees
5 months - 90 degrees
6 months - 110 degrees
7 months - 120 degrees
8 months - 125 degrees
9 months - 130 degrees
10 months - 135 degrees
11 months - 140 degrees
12 months - 140 degrees

I spent waaaaay too much time worrying about ROM. I thought I'd be riding my bike a couple months after surgery but it took SIX months! Looking back on my surgery, if I knew then what I know now, I wouldn't have wasted my time with PT and I wouldn't have worried about ROM."

 

[Jockette]

I am so very sorry for what your medical team has put you through. I agree with everything the others have said.

Unfortunately, your experience happens too often. My PTs and my surgeon were also fans of pushing my knee past it’s limits. I now have some level of PTSD as a result. I will make sure things go very differently next time around. Actually, I will have a very hard time consenting to another knee replacement.

You are most definitely not a failure. Your medical team are the ones who have failed you.


Hang out here with us.
Bonesmart has a wealth of advice, information and support.
We will offer helpful suggestions,

Cheer your accomplishments

And send hugs when you are feeling down.

Best wishes!

 

[eaglemom]

I love your sense of humor - and that will help with recovery. I'm thinking you are way over doing on the knee. It needs time to recuperate. Especially after the MUA which was another trauma to your knee.

Rest, medications at regular intervals around the clock, elevation and ice should about be all your doing. Swelling for me is also an issue - if its swollen it doesn't bend. Take a deep breath and give yourself permission to heal. You don't have to have PT, but if you choose to, your the one in charge, not the therapist.

 

[Jockette]

Here’s another testimony from one of our members:

At my six week appointment this is what my OS wrote in my visit summary: "She reads an online website called Bone Smart which states to not push through pain following knee replacement. If she were to follow this direction, she will have to learn to live with a knee that only reaches to 85 degrees of flexion. I believe this website is very misleading."
It has now been 20 weeks and all I do is ADL and this is what my ROM has done:
3.5 wks: 75
6 wks: 85
7 wks: 90
10.5 wks: 95
14 wks: 100
17 wks: 105
20 weeks (where I am today): 110
I am so thrilled it keeps improving and improving and I know now that I will get to my goal of 120 (or even better, dare I say!)
So, if a OS or PT bullies you into thinking your ROM will not improve over time they are wrong. By the way, I haven't been back to see the OS since that horrible appointment at 6 weeks, but I sure am going back when I reach 120 just to say, "Ha! You were wrong, BoneSmart was right!"

 

[Jamie]

I'm always saddened to hear of surgeons who snap photos in the operating room following an MUA and show the patient what great ROM they had, hinting they should get to that point real quickly on their own. It doesn't work that way.

Of course he could bend your knee like that. Your body was under anesthetic, limp, and you were out like a light. The post-op swelling hadn't started from all that tissue manipulation. The purpose of that photo is supposed to be to document what your eventual ROM will be following recovery. It's not to badger a patient into feeling inadequate for not reaching it right away after the procedure.

I'm so sorry you've had to go through this. But stick with your BoneSmart family. We'll get you through everything that may be a challenge for you in the next few months. You'll recover. Promise.

Try to relax and let your body heal a bit before any therapy or a lot of activity. Things need to settle. Concentrate on keeping your pain under control. After reading the articles, you'll see that lots of icing and elevation are helpful for pain. Of course, you may need some medications as well. It would be helpful if you could detail exactly what meds you're taking and when. I'll need the name of the medication (over the counter meds count too), strength, dosing instructions, and what times during the day or night you're taking a dose. That will give us a starting point to offer some options if whatever you're doing isn't getting the job done. Right now, pain management is paramount, as any pain is going to give you even more inflammation and swelling. Let's get that under control. Please tag me so I'll see your information quickly. You do that by typing the "at" sign (@) followed by my username with no space. Like this.... @Jamie ...

 

[Arielyn]

@Jamie
I hope that tag is correct!

I have been with pain management for over a year for debilitating arthritis in my knees and hips and for two bulging disks in my lower spine. I tell you that so you understand my baseline. Also, please note that even with my baseline meds, I was teaching a full schedule of secondary English at the inner city high school where I’m employed—it never impaired my ability to function.

When I went into surgery, I was taking MS Contin, 15 mg. 3x per day and 600 mg of Gabapentin 1x per day. (The MS was prescribed after working my way through progressive strengths of oxy, hydro and fentanyl patches. Along the way, I also tried medical marijuana but found it to be ineffective.). After surgery, my MS Contin was increased to 30 mg. 2x per day, which is where it remains. Right out of surgery, I was also given a two week script of 5 mg. oxy to take every four to six hours. This didn’t help a bit, so my OS agreed to two additional weeks of 10 mg. every eight hours. After those ran out, the pain was unbearable, but my OS refused anything further, and my pain management doctor said that post op medication was the responsibility of the surgeon—stuck between the devil and the deep blue sea. After my MUA day before yesterday, I was given a script for twenty one 10 mg. oxy and told to make it last—it is the last script my OS will write. I actually had to sign a contract stating that before he did the MUA. He and my pain management doc have different philosophies about who should be prescribing what and OS stated that he wouldn’t deal with the stress any longer.

So....as of today:
30 mg. MS Contin 3x per day
600 mg. Gabapentin 1x per day
150 mg. Zoloft 1x per day (taking since 1998)
and until the 21 pills I was given run out, 10 mg. oxy as needed

edited to add: due to gastric bypass in 2015 I am unable to take any NSAIDS

 

[Suz]

So glad you were led to Bonesmart Arielyn. Reading your TKR journey left chills up my spine. So unfair. I have always held physicians in such high regards. I still do until I hear of 'extreme' experiences as what you have endured. I so feel for you.

Very happy you are now surrounded by excellent support here at BS!

During my first RTKR back in 2016 I was left to recover with very little pain management from my OS. Regulations had started coming down hard against opioid abuse in the US. I too have a low tolerance for pain and although my experience was nowhere near what you and others here have suffered, my personal 'trauma' was bad. Seasoned Bonesmart members here gave me the information I needed for a more comfortable recovery and because of that advice, I felt like doing 'their' recommended exercises. The members here became my family during that time and gave me so much daily encouragement & mental support.

Fast forward two years and it's time to replace my left knee. Because of what I learned here in 2016 however, I was able to sign up for this replacement with an edge. I needed a local hospital and OS to replace my knee, yes. What would happen from the moment I was discharged out of post-op recovery and into a hospital room however would be 'my' call. Ortho surgeons here are discharging replacement patients the next morning which I'm not opposed to as long as they don't hinder or damage newly replaced knees in the process.

I chose not to roll off the side of my hospital bed hours post-op to jump through their discharge hoops. I 'politely' told the hospital's PT upon our first visit that my surgical knee would not be climbing his steps backward in order to be discharged the next morning. He was taken back by my 'leadership' however he had no choice but to accept my proclamation, lol!

I honestly knew when I stepped into Registration the morning of my surgery that I was going to manage most of my post-op care with what I had learned here in BS and that felt really GOOD!

It is empowering knowing you are at the helm of your knee replacement recovery. In 2016 I had a PT supervisor slam my knee forward in order to report 'her' acceptable range of motion.

She changed me that day.

I now give the order as to what will or will NOT happen in a therapeutic setting. I did so with the in-take PT service person who came to 'sign me up' while in the hospital. Because having the profits my case would bring was most important to this company, the supervisor quickly agreed to my requirement for 'passive PT'. That if I didn't feel like therapy on any given day, it wouldn't happen. He told me he would document my case so that his staff would understand. We shook hands upon his departure and I have had absolutely no problems with PT's since!

I'm almost 4wks post-op and my PT person has been a dream. My insurance allows 3- 1-hr. sessions a week I've had only 2 sessions with her during my 3.5wk post op time. My terms!

Live in these pages as you feel up to it. The wealth of knowledge, experience & friendship here is endless!

Sending positive healing thoughts & hugs your way! -Suzie

 

[Jamie]

@Arielyn ... thank you for the medication information. I needed to know the schedule you're taking each of these meds as well.....time of day, please. It makes a difference. I'm so sorry for your surgeon who feels your case "stresses" him out. That's certainly a new excuse for not wanting to help a patient who is in pain. Do you have a GP you can work with?

 

[Tykey]

The story in this thread make my blood boil.
The many hundreds of folk who pass through here take our advice, and not once have I read a report saying the BS way doesn't work. If it doesnt, where are all the hundreds of folk walking about with stiff legs!!! They would certainly tell us!
I've had both knees replaced here in the UK, no PT has ever even touched my legs, and I've had 2 brilliant recoveries. Do they teach ignorance in some PT training and surgeon courses?
It's common sense when you think about it.

If a PT continued to touch me after I told him to stop, I'd get him charged with assault.

Anyway, rant over. But Arielyn, have faith in us and common sense, you'll be OK.

 

[Arielyn]

@Jamie

I do have a GP, but I hadn’t considered working with him for pain management.

Here is my schedule!

7 am - MS Contin 30 mg and one 10 mg oxy

3 pm - one 10 mg oxy

7 pm - MS Contin 30 mg

11 pm - one 10 mg oxy; one 600 mg Gabapentin; 150 mg. Sertraline


I occasionally need to also add Senakot lately, which I take just before bedtime. I use it about one a week.

Thanks for sticking with me so far, here. I truly, truly appreciate it.