MUA for me...I'm discouraged...and a strange pain

[need2nees]

Update again...
The pain has continued and feels out of control even with the pain med schedule I was sent home with. I think I am doing everything I can possibly do..rest, ice, elevate, gentle massage,very short walks around the house with crutches. Now evening is upon me and it feels even worse. I tried calling the doctors office at 2PM and left a message that I was experiencing some pain management problems, and to please call back today (given it's a Friday). No return call. They even said on the voice mail response machine that 'urgent matters' would be tended to on same day, other calls the next business day. I guess pain management is non-urgent.

Then I started crying when the PT called to schedule therapy for tomorrow. I told her I would do my best but as of now my pain is not controlled and I am not sure I can do anything. I'm so affected by this I can hardly function. If things don't change in an hour of so, I'm calling my PCP (my doc of 27 years) to see if he can help.

Wow. I sure didn't see this coming.

 

[Pjmc]

@Josephine
She will ask you what meds and how often and set you straight as to what should work .
Having pain is horrible and want you to have relief from it .
So sorry .

 

[Celle]

Yes, @need2nees
Do call your own doctor. Very often here, we find that people get help there, when they have not been able to get a proper pain medication regime from their surgeons.

Is there someone at home with you who can speak up on your behalf and back you up? You sound as if you need a support person to advocate for you when you are not strong enough. If there is, do take that person with you to your follow-up appointment as well.

Your surgeon needs to know what happened in hospital and what is happening now. If you still get no satisfaction from him, I would consider very carefully whether or not you should go back to the same hospital and surgeon for a second surgery.

 

[1ELISEA]

if it were me (I am mean and underhanded) I'd go with someone toting a legal pad, not introduce them except by name, and let the hospital folks draw their own conclusions as to their role in your affairs

Playing intimidation games over something as serious as your health care may not turn out well, and actually could be deleterious to further care.

Is there someone at home with you who can speak up on your behalf and back you up? You sound as if you need a support person to advocate for you when you are not strong enough. If there is, do take that person with you to your follow-up appointment as well.

@Celle makes a great point. In a compromised state, such as recovery from surgery, extra support from a person with your best interest at heart is ideal.

And now that you are home, issues with hospital care can and should be addressed once you are in a better health to do so. Take care of your immediate concerns regarding the surgeon's post op care, your pain and healing first.

All the best!

 

[hbacres]

There is always the ER, I ended up in one for 7 hours and then admitted to a different hospital who finally got me comfortable.
Good luck
Robin

 

[beth1954]

It really infuriates me when I read that nurses are withholding pain meds. It is nothing but evil! I can't see any reason why TKR patients should have to suffer the way we are often forced to. It really is unacceptable! And it happens over and over again! Once you get behind the damage is done and it takes so long to catch up. I certainly hope you are doing much better now so that you can start healing!

 

[NetballKnees]

Hi @need2knees ... So sorry to hear of your uncontrolled pain. I am hoping that you can get it under control very soon. I agree with the others to try your own doctor. They should know you there and know you are not meds seeking. This is a hard enough journey without having to deal with pain that you can't get to a comfortable level.

Please let us know how you get on. I will be thinking of you.

Warm hugs ... Ellen

 

[jimmy1956]

Hang in there. One day at a time. Hard when things hurt.

 

[Josephine]

@need2nees I am so sorry to hear of your terrible experiences. I can tell you this:
a) it's quite likely the doctor never actually talked to the nurses about the change in your chart
b) thus it's quite possible the nurses were miffed about it as confirmed by the nurse saying 'we're not coming in here every two hours'
c) it's also quite likely that when the nurses rang your doctor, they either told him or let him assume that his orders were being followed correctly - hence his comment that he 'didn't know what to do with you'. A very similar thing happened to my sister when she had her knee done. The medications were all ordered and issued on the computer and they not only lied to the consultant but actually falsified the computer records to cover themselves. As a result my sister got a real telling off for begging too much meds when in fact, she hadn't had a drop in the three days since surgery! So oh yes, it can happen.

Trouble is, such a experience can leave you with a hefty dose of PTSD and little or no confidence in anyone much less those who are supposed to be caring for you. Do get on to your PCP and have him deal with your pain meds from now on.

In the meantime and until you get adequate pain management NO PT, NO endue exercises or activity and ramp up the rest, elevate and ice part of the mantra, okay? Youre only in your first week so it won't matter, I promise. My surgeon routinely forbids exercising (apart from ankle rotations and foot pumps) for the first three weeks and even after that, it's very basic and minimal. Read this - the potted version of my recovery - to see how little exercising I did! Knee recovery - UK style

 

[Josephine]

Opps almost forgot this!

First are the BoneSmart mantras ....
- 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 - to do it to you
- if your leg swells more or gets stiffer in the 24 hours after doing it, don't do it again
- if you won't die if it's not done, don't do it
- never stand when you can sit, never sit when you can lie down, never stay awake when you can go to sleep!
- be active as much as you need to be but not more than is necessary, meaning so much that you end up being in pain, exhausted or desperate to sit down or lay down!

And here are some very crucial articles
The importance of managing pain after a TKR and the pain chart
Myth busting: no pain, no gain
Swollen and stiff knee: what causes it?
Activity progression for TKRs

Healing: how long does it take?
Chart representation of TKR recovery
Energy drain for TKRs
Elevation is the key
Ice to control pain and swelling

Home physio (PT) and activity progress: suggestions
Myth busting: the "window of opportunity" in TKR
Myth busting: on getting addicted to pain meds
Post op blues is a reality - be prepared for it
Sleep deprivation is pretty much inevitable - but what causes it?

And wise words from members who have shared their experiences ...
Where are you in recovery?? (TKR)
Five “P’s” of knee recovery
TKR: work “smarter” and not “harder”
Recovering a knee - from one who knows!
It's never too late to get more ROM!
It's worth the wait for ROM

 

[RunA42K]

@need2nees Welcome to BoneSmart and to the other side. I just read through your thread and just want to say that I am so sorry that your hospital experience was so bad. I hope you are beginning to feel better now.

I had a similar experience with my first TKR, I won't bore you with all the details, but I had mean nurses too, even my pharmacist lectured me about taking pain pills and I was in so much pain! I was being either denied or questioned about the prescribed pain relief from my doctor. Unlike you my doctor sided with me. After my release the hospital mailed me a survey to complete and boy did I complete it, naming names about the poor care and attitude I received.

When I had my revision 8 weeks ago on the same knee (new doctor, new hospital) I was expecting the worst again, but it was 100 times better. My pain was managed so well, I was so happy and amazed that I could feel so good after a revision. Guess what I am saying is you (and me as well) did not have to be in so much pain. It all starts with the doctor and nurses at the hospital. When my new hospital sent me a survey to complete after my revision, I was happy to do it. I named names once again about the outstanding care that I received!!

So I see that you need the other knee done. If you will use the same doctor I would certainly have a very frank discussion with him before he does any surgery on you again and sends you back to the same hospital.

I truly hope you are on a less painful road to recovery now...take care

 

[Minnie's knees]

@need2nees, I wanted add my sympathy for how you were treated at the hospital and your continued pain. Hopefully, you are able to get some relief for the pain very soon and the rest of your recovery will be uneventful. Best wishes as you progress forward with your new knee.

 

[SadKnee]

I feel so bad you had to go through this! That shouldn't have happened. I had a horrible hospital experience but my surgeon was on my side and raised hell after I told him what happened. He did confirm with other patients that our night shift nurses were horrible and would not bring ice, pain pills, or answer the call bell. I finally called the charge nurse and asked they call my doctor as I was going to discharge myself once I figured out how to get my catheter out. and yes my nurses lied to the next shift and tried to cause me problems. Thank goodness I did have some caring nurses too. My case went all the way up to hospital administration so my only hope is that this never happens to another patient. I would have been sunk if my surgeon did not believe me and help me.

I would definitely make a report to hospital administration ASAP and file a report with the something called The Joint Commission. I would also follow up with your surgeon and his office. TKR pain can be horrific and they should be helping you!

I have been there and had some PTSD after my hospital experience, in fact I thought the nurses may come back and retaliate the next night and was begging my husband to bring me my pepper spray. He was distraught and upset and I do think he was thinking I had gone off the deep end.

Hang in there and let us know how it goes!! Hugs!!!

 

[need2nees]

It is worth starting a new thread after my nightmare in the hospital with pain control (or lack thereof). My OS wanted to re-admit me and start the IV drugs again and I just couldn't do it. I am so scared of returning to that hospital that I wouldn't go. Fast forward, I got ahold of my primary care doc who took the bull by the horns and got me on a program of pain control that actually WORKS. The 'oxy' class meds were way too strong for me. I am well managed now on low-dose muscle relaxants and hydrocodone. I plan to communicate with the hospital once I am more stable regarding the unbelievable experience I had there. I literally have nightmares still about nurses coming into my room and rolling their eyes and shaking their heads when I asked for pain meds then vanishing for hours.

ROM hovers at 75-78 at 2 weeks post op. PT going well with home visits, and I made it very clear to the PT when she hurt me once to never do that again. She has respected that. My doctor ordered a CPM machine at home because morning stiffness is one of my biggest complaints.

Are there thoughts out there about benefits or not of CPM? They started it almost 2 weeks out...is that too late for benefit?

Thanks to all

 

[kneeper]

Some OS like them, some don't use them.I found the cpm helpful in loosening me up in the morning. Just be sure you're also doing your heel slides etc under your own power. The idea is to keep the knee moving on and off throughout the day.
I'm sooo glad to hear you've got a good pain control regimen going now.

 

[icep707]

Yeah im glad your primary is helping you. Im sorry about your hospital stay. I go tomorrow for my rtkr. From what I was told a CPM will be used for 2 days 2 times a day for 2 hours at a time. Im glad your PT respect your desire not to be tortured. Way to defend yourself. You will have plenty of time to deal with the hospital. First !!! Take care of yourself. The bonesmart way !! Best of luck. See you on the otherside tomorrow

 

[NuNe4Me]

My OS doesnt use CPM. For the first four months after a surgery as traumatic as this one, the main thing your body needs is rest. You need to give your body time to heal.

 

[Josephine]

Are there thoughts out there about benefits or not of CPM? They started it almost 2 weeks out...is that too late for benefit?

CPMs don't do any harm (unless they're ramped up too high) but they don't really do much good either. The clue is in the name Continuous PASSIVE Motion. It contributes nothing to the functionality of the muscles. Much better to do that on your own with gentle heel slides and stretches.

As for the delay - not a problem at all. My surgeon actually forbids any PT for three whole weeks, save ankle pumps, foot rotations and a few gentle heel slides! Even after that his protocol is 'less is more' and 'no pain, MORE gain'. That's there the mantra all came from! And it WORKS !

 

[70s chick]

I actually liked the CPM. I had my right TKR in September 2013 and my left TKR in December 2013. With both of them my OS sent me home with a CPM for a month. I used it about 6 hours during the day and slept in it some at night. I felt that it helped to keep my knee "loose" and flexible. Everyone is different, but I think it is worth a try!

 

[Texan]

I love the CPM. I slowly crank the machine up to where I want it and usually sleep. It loosens up the knee joint for me.