MUA Ruby's Tuesday--July 11th, 2017<

[SusieShoes]

I’ll put in a good word for the gradually increasing walking exercise plan. I took it slowly and deliberately by walking a little further every week or five days. It’s important not to walk too far away that walking back becomes a problem. My stamina wasn’t great at first. Also, my back complained a bit at first, which told me the rest of my body needed to be onboard and was adjusting to walking with a proper gait again.

Walking is what got the last few degrees of extension on my left knee. It’s great exercise, is a way to engage with my neighborhood, get landscaping ideas now that I can actually garden again, and sure has helped me lose weight! I’m moving on to aqua exercises and yoga now, but walking was perfect for recovery and rehabbing my knees.

 

[Ruby9297]

Hello friends, checking back in and disappointed to report that I don't feel like I will ever fully recover from this TKR! I am now almost 17 weeks post-op, and pain is my daily companion! Even after the MUA my rom is only at 94 degrees. There are days when I also feel so nauseous, and cannot even get even get out of bed. I know it's the pain medication. My doctor switched me to Norco because the Percoset just upset my stomach so much, but then my doctor warns me every time he writes a refill that I need to get off the opioids. Well duh! No body would like me to get off opioids more than me! I hate them! But I hate being in agony as well. So, being down to 5 norco, I took a Percoset last night, hoping to stretch my pills out a little longer, and got sick again today. Add to that I have had a cold with a fever for a week, and that makes for one unhappy camper! My doctor has now extended my medical leave until January 2nd. I honestly had no idea that my recovery was going to take this long, and I think it's fair to say that I'm fed up and depressed with this lark! When oh when will my life get back to normal? I just. ant stand this anymore!


Sent from my iPad using BoneSmart Forum

 

[SusieShoes]

I’m so sorry you are still having so much pain. Top it off with a nasty cold and that has to be miserable.

One thing to consider is that you may be 17 weeks post original surgery, but you are only six to seven weeks post MUA. During a manipulation, your soft tissues are forced, stretched, and possibly torn, all over again, so it sets back a recovery to a degree. Your soft tissues don’t have that full 17 weeks of recovery. In a sense, your knee may be more like a seven week knee.

Rest all you can —elevate, ice— and remain active. Your activities of daily living will keep your knee mobile as it heals and your ROM will come in time. Yes, it can seem like it takes forever. It can take a year... and sometimes more.

Getting off opioids is a goal, of course, but so is keeping your pain at bay. Have you tried Tramadol? It’s a good step down drug.

 

[rubyyarn]

Can't add to what @SusieShoes said, but it sounds like a good idea to count your knee from the MUA rather than the original surgery. And hopefully you and your doc can find a pain routine that works for you.

 

[Ruby9297]

Makes sense that the MUA would set me back quite a bit. My surgeon agreed to this refill//just received the email—but says that’s it for him because my pain can no longer be considered post-op pain, so I’ll have to approach my pcp for future refills. As for Tramadol, I know it works for many, even my dog gets it for his hip arthritis, but it makes me violently ill. So that’s not an option. I wish it was. Thanks again for your kind responses.

 

[Polkadot]

Ruby, I hope what I'm about to say is encouraging to you because I went through this, too.
My MUA set me back quite a bit. I resisted people's explanations that my knee was actually more of a baby because of this, and I felt many of the same feelings you are expressing. I wanted to have the same gains that my surgical twins experienced! However, I've been consistently showing milestones a few weeks behind them, and some milestones have not yet come consistently to me even at 5.5 months. The MUA did get me out of the 70s, though, and afterward my PT could help me maximize the bend better than before the MUA.

My ROM settled in at about the same as yours, daily-life-wise. I would say that it's between 90-100 most of the time when I'm doing ADLs. It was measured at 103-108 on various visits, under my own power on the table with the PT measuring, but I don't know if I could still do that. It certainly isn't that good most of the time around home! I've been discharged from PT and haven't been back for almost a month.

Ruby, I know "everyone" wants you to be at 120, but honestly, I can now walk well, tie my shoes easily, get dressed the normal way, walk up and down stairs (have to admit I have a little discomfort there, but not because of the degree of bend), pedal my exercise bike, and do just about anything I need to do. I am putting my faith in the BS assertions that ROM can keep getting better as the leg strengthens and the internal swelling (which I still think I have) goes down. I really would love to be able to ride a real street bike safely and comfortably, so that's a long-term goal.

I felt emotional and worried about all this until I got off the opioids. I now know that they affected and magnified my fear and sleeplessness, which then made me more emotional. I hate to be a Debby-Downer, but I also experienced similar after-effects for almost a month after I discontinued their use. It's such a catch-22. We need them to get through the pain, and yet they do a number on us in other ways.

I guess I just want to affirm that your feelings are normal for what you're going through; and maybe you can glean some comfort from the probability that these feelings are also being manipulated and magnified by your body's reactions to the drugs. I know I was astounded and embarrassed at some of the feelings that were flowing through me. I am usually a strong, hold-it-all-together type of person!

BTW, when I went off the meds, I did it gradually, in a step-down manner. I think that helped me avoid feeling really sick from withdrawal. That might be especially important to you, because your body responds so sensitively to the drugs. You could ask your doctor how to do it when you're ready to wean yourself off. In the meantime, I hope you can find a combination of drugs through your regular doctor that help you continue to progress with as much comfort as you can get. I think it's well worth your while to keep pursuing options. Just remember that the doctors probably haven't experienced the pain of a recovering TKR, so their estimates of how long you need pain assistance are most likely based on a generalized experience treating others with a variety of issues. Be tough and keep asking for what you need.

And feel free to commiserate with me any time. We MUAs gotta support each other!

 

[liam2015]

awww Ruby9297 ~ i am so sorry for the pain you're having along with the side effects from the meds. i also had terrible nausea and was unable to eat very much while taking percocet. i hope you can find a good med regimen once you're off the opioids. my r.o.m. isn't much more than yours, between 100 and 105 degrees flexion, but enough that i can do most of what i need and want to do. luckily i don't have the pain you have, just the stiffness when getting up. praying for you that the pain will subside so you can get back to a fairly normal life.

 

[phrog]

Sometimes our knees seems like a never ending journey. @Polkadot has put it all in perspective - she deserves a medal for the way she constantly helps us see the possibilities rather than the roadblocks. I hope you are feeling better, Ruby9297, and that you can figure out the ROM, the opioids, and the feelings you are having. I get that way too - 8 months out and still having issues with pain and weakness which may or may not even be connected to the surgery. Wishing you an ANK (almost normal knee) sooner rather than later!

 

[Ruby9297]

Hello All, I realize that I haven’t checked in since November 12th! Well, A happy New Year to you all, and I hope you had an enjoyable holiday season. I am almost 6 months out. I am depressed to report that I still have swelling, stiffness, limited ROM (90 degrees), and poor extension. My surgeon released me to work four-hour Days, beginning January 2nd, which boosted my spirits, only to have them dashed because my pig-headed boss refused to permit me to come back unless I could return 100%, with zero restrictions. I still have pain, and still take pain meds 1-2 times daily. My OS told me that I am a source of frustration to him and refused to prescribe more Pain meds after the last Rx he wrote. My PCP has offered to take on my pain management and they’re exploring the possibility of fibromyalgia. My surgery leg looks wasted compared to my other leg, except around the knee, which is 4 cm bigger in circumference than the other. When standing up from a sitting on sleeping position, I can barely stand without a walker or cane. After walking around a bit it gets easier and I get around the house without any assistive device. I walk with a Limp and feel a hopeless cripple and a total liability to my family. This knee has eclipsed everything else in my household. I’m blessed to have the best husband ever, but my limitations have definitely taken their toll on him. I’m at a loss and don’t believe I will ever recover from this awful ordeal. I was better off before the surgery and wish I’d never done it.

 

[Jajakio]

I have been following you from the beginning, Ruby, and i truly feel for you with all you have gone through. I have wondered from the beginning if you didn't get a bad surgery. I'm only 4 days further out from you and I'm pretty well back to normal. I know we all heal differently but could something honestly be wrong? Maybe you want to give it more time or maybe it's time to start thinking about a second opinion. Doctors often seem pretty quick to blame it on you. You aren't exercising enough, you need to be off pain meds, etc but maybe you are still in this much pain because something is wrong. You've tried exercising, you've tried staying off it and resting. At 6 months out maybe it's time to start looking for where you might go for a second opinion if things don't improve.

 

[SusieShoes]

Oh, @Ruby9297, I'm so sorry to hear you're having problems still. Having your life revolve around your knee is not something to wish on anyone, and it would be a blessing if you could get back to work and into a more normal life. I truly believe you can, and will, recover from this. If only you knew for certain what was causing your continued pain.

Getting a second opinion from a revision specialist is a good idea. Many will not see you until a year has passed, but you can start researching and calling around.

Until then, what exercising are you able to do? Can you walk enough build up strength in your legs? Maybe use a stationary bike on low resistance? You say walking gets easier if you do it a bit, and that or the bike might be a good way to ease your leg to more strength.

What a shame your boss won't let you work shorter hours. Very few people are 100% even at six months!

 

[jboles]

I've been following you from the beginning also, our surgery dates are very close, mine was July 17. You have been through so much. It definitely takes a toll on you, both physically and mentally. You just want to be normal again. My left knee at 6 months is well enough that I'm having the right one done next week. I'm in agreement with the others that it might be beneficial to you to seek out a second opinion. I know a second surgery is probably the last thing you want, but continuing on like this isn't something you want either. Just a suggestion...

 

[bashbago]

I am so sorry to hear about your difficulties. I have nothing to add to the advice you have already been given.
Healing thoughts going your way.

 

[Ruby9297]

Hello Jajakio, @SusieShoes , jboles , and bashbago :
Thank you for your kind responses and helpful suggestions.
I was exited from PT at the end of the year because I had not made any measurable progress in quite some time. They don’t measure increased stamina, or really anything except extension and flexion. So I hired a personal trainer at my gym, who has experience working in PT with joint replacement patients at UC Davis.

Working with my trainer has proven to be much more helpful than working with PT. Not that PT wasn’t helpful, but the doctor gives me a referral to PT for my left knee, and that’s all they will work with. The rest of my body that also needs help in supporting my knee as it heals is ignored.

A personal trainer knows I have this knee issue, but he works with all parts of my body: both legs, abs, arms, etc, so I can gain strength all over.

On the days that I’m not working with my trainer, I still exercise, either at the gym, or at home. I also take yoga and Pilates classes and just skip the poses on hands and knees

I’m also able to do light housework. I make sure I’m active every day, but I still nap every afternoon. I’m usually all done in by about 2:00pm and have to sleep for an average of 90 minutes to be able to make it through the evening.

I’m fortunate in that I have disability insurance, but I want to get back to normal.

I think a second opinion would be wise. I will ask my PCP for that.

I also saw online that there have been lawsuits against my particular brand of knee prosthesis, so I’m wondering if the actual device has a defect. Lots of unknowns.

 

[Spex10]

Blimey that's a heck of a lot of exercise! Might it be worth taking it a lot easier for a while and giving your knee a chance to recover and heal a bit?

 

[Celle]

I think a second opinion would be wise. I will ask my PCP for that.

That's a good idea.
You will need to see a surgeon who specializes in knee revisions. I'm not saying that you will need a revision, but that these surgeons see problem knees every working day and they can often spot a problem and a solution that has eluded your original surgeon. You'll need a surgeon who has no connection, either professional or social, with your current surgeon - so that he/she can look at your knee with new eyes, uninfluenced by your current surgeon's opinion.

I also saw online that there have been lawsuits against my particular brand of knee prosthesis, so I’m wondering if the actual device has a defect. Lots of unknowns.

what is the brand of your knee replacement?

that's a heck of a lot of exercise! Might it be worth taking it a lot easier for a while and giving your knee a chance to recover and heal a bit?

I agree with Spex10. You are doing a great deal of exercise. I understand that you need to get the rest of your body fit, but can you ease off the knee exercises? Doing too much exercise for your knee is going to keep it angry and inflamed.

 

[Ruby9297]

@Celle my knee replacement is DePuy Synthes. The last lawsuit was filed on n September 18th, (coincidentally my birthday) because there have been a large number of reports to the FDA of premature failures of the knee replacements, resulting in required revisions. I didn’t name the company in my previous post because I didn’t know if that was allowed. There have also been lawsuits against the same company for failed hip replacements. They are a subsidiary of Johnson and Johnson.

 

[Celle]

Yes, apparently a large number of DePuy joint replacements have loosened.
There is an article about it in the Library:
DePuy’s Attune knee seeing “unusually high” rate of early failure

 

[Ruby9297]

This is terrible! I think I’m going to contact one of the law firms involved in the class action suits. Just my luck to get a possibly defective prosthesis! Feel like crying!

 

[Celle]

Hang on a minute Ruby! The joint replacement that's potentially causing problems is the DePuy Attune, not the Synthes that you have.