Post-revision pain

[charlieinnj]

My Mom had her revision about 6 weeks ago. For the first two weeks, she was doing really well and was in good spirits that this knee felt SO much different than the last one. She was seeing the light at the end of the tunnel for once. The week after surgery, she started physical therapy and that was going well, too. She mentioned a machine they strapped her into and it moved her knee to various degrees. The week after surgery, they got her up to 107 degrees. Then one day, everything became VERY painful after that therapy session and the pain hasn't gone away since. She says the pain feels like an abcessed tooth.
The awful thing about all this is that no pain medications ever help. Trust me, she's been on EVERY pill and patch on the market. This past weekend, she checked in to the hospital for psychaitric evaluation because she doesn't know how much longer she can live with unrelenting pain. The hospital sent in a pain management doctor and he accomplished nothing; He took her off the Dilaudid and put her back on Percosets.
She's found it increasing difficult to get up from a chair and she can't walk very far anymore as well. She's mentioned her other knee replacement has become increasingly painfull, too. I've been reading about RSD/CRPS and am wondering if that could be the problem? The knee that she just had revised has been operated on 4 times because she had a staph infection after the original surgery.
We feel SO helpless and only want her to get some relief from pain. We're really worried that she's going to take her life if this continues much longer.

 

[Jamie]

Welcome to the forum, Charlieinnj. So sorry to hear of your mother's problems.

Has she seen the surgeon who did her revision since the pain started? If not, please set up an appointment so the joint can be checked out. As far as the pain management is going, are you sure she is taking her pain medication on a regular schedule? That should be something like a dose (1-2 pills) every 4 hours. That could be part of the problem if she lets more time go between doses. The pain has an opportunity to build up and it is MUCH harder to get on top of it. Also, she needs to keep working with the pain management specialist. As you know, there are many medications available. Many times they will develop a "cocktail" of several meds taken at particular times to do the trick.

Is there swelling? Redness? Is she running a fever? If she's not icing and elevating the knee many times throughout the day, that can contribute to the problem. If there is swelling, that needs to be reduced through icing/elevation and use of an anti-inflammant medication.

Is she still in the hospital now? If not, I know she is probably VERY tired of seeing doctors, but you really must insist that she keep after the problem until some relief is found.

Sorry to pose so many questions, but without lot of detailed information, it is pretty difficult to advise you of a particular solution. It is critical to determine the source of the pain.

 

[charlieinnj]

Jamie,
Yes, she has seen the OS since the pain started and he has changed her pain meds several times. None of them offer any relief. Blood work was done several times and there isn't any indication of infection and last visit, he tried to get a culture out of the area but nothing came out.

There's some swelling but not what she would consider alarming. She says she ices it frequently and also elevates it in her recliner. Does the knee need to be above the heart when elevating?

She did have an area of redness on the outside of the knee (not sure if it's still there or not, honestly..). The OS looked at it and did put her on an antibiotic for a week when first noticed. He thought she might have strained the knee in rehab and the 'red area' could be bleeding under the skin. Then, he told her to take 3 weeks off of PT. The OS wants her to start back with PT in a week or so and she's terrified since she can't help but feel they pushed the knee too far, too soon. Of course, we can't verify anything because the PT facility would never admit it even if they did.

She is still in the hospital now...she's supposed to be released tomorrow. When I spoke with her last night, I told her she MUST (politely) confront the pain management Dr. and tell him that putting her on things that have never worked before for her is not performing his responsibility as a 'specialist'. If he's not going to listen to the patient when they say what she's been on, then what's the point? Like I mentioned before, it's just like NOTHING ever works for pain with her. She's been on various cocktails and even they do nothing. If she's supposed to take something every 6 hours she'll take it and for about 90 minutes, its causes the pain to subside from a level 8 to a 6 but she hasn 't had a pain-free day in 3 years.

 

[Judles]

:Hi Charlie! Welcome! Your mom is so fortunate to have you as her advocate! As long as Mom's in the hospital, isn't it their responsibility to release her when she can cope with her pain? As long as she's in, can you get a hold of her OS? Its so disturbing and frustrating not to get a handle on the pain! Chase someone down in there, ther has to be someone that can help! Let us know how you make out, My prayers are with both of you! Mom need your strength and level head now more than ever!!!

 

[Jamie]

Her knee does need to be elevated above the heart. Just sitting in a recliner will not do the job. Some pillows under the heel (not the knee) should do the trick. I used to like on the couch and put my knee up on the back to elevate.

The knee compartment is very tight and quite honestly she could have swelling and not really see anything on the outside. Also, when there is inflammation, the swelling can move to other parts of the leg as well. My knee did that and the pain was sometimes on the inside below the knee or down around the shin bone.

I'm glad to hear she has been back to her OS and that all the tests were okay.

Of course you are correct about what she should say to the pain management doctor. Unfortunately she may choose not to do that or what she says may not adequately communicate the issues. That is the problem trying to help someone long distance. You are only getting one side of the story and you end up in the middle when trying to offer specific advice. The pain you describe is sometimes called "breakthrough pain" and it is something that can be dealt with. I have known people who take one pain med ever 6 hours and then another when they feel the first twinges of the breakthrough pain. You don't say, but is your mom taking the pain meds consistently for long periods of time and still getting the breakthrough pain? Frankly, sometimes people will TELL you they are, but they skip doses (they don't hurt right then....it's nighttime and they are in bed....I forgot).....are you sure this isn't happening? In a hospital in particular, many times they make you ASK for the pain meds instead of giving them to you on schedule....don't know why that is, but I've found it to be true. That's why it is helpful to have someone there to be your patient advocate. The doctor would have to specifically order the meds to be given on schedule. It's possible the pain management doctor did that, but you would have to ask.

Along the same lines, she will need to work WITH her therapist and communicate when something hurts either during the session or afterwards. It is critical to time pain meds so they are taken about an hour before the session is to begin.

Is there any way you can be there to offer a more hands-on level of support for her? This may just be more than she can manage by herself right now. Good recovery takes a LOT of work and it is difficult for people who are not used to speaking up and communicating their feelings and needs to those "authority" figures like doctors and nurses.

 

[charlieinnj]

Jamie,
I know what you're saying about break-through pain. Her surgeon had her on Opana ER and IR. Both were worthless. So, when she doesn't get anything that helps with pain, she doesn't see the point in taking them. After the Opana, he put her on Diladid w/ Attarax (sp?). Again, no real pain relief. In the hospital she's in now, the pain doc took her off the Dialudid and put her back on the Vicodin 750's. She was on Vicodin for 3 years prior to the revision.

I have no doubt that if she actually had something that helped with pain, she'd faithfully take it to stay ahead of the pain. Like I mentioned, she's been in constant pain for over 3 years now.

Prior to the revision, she spent the last 3 years trying to get to the root of why her leg never stopped hurting and being met with OS after OS saying everything looked fine. Finally, she found her current OS who suspected the TKR was loose, and it was. She had a cementless TKR and the bone never grew correctly around it.

 

[Josephine]

It's possible that if she has been taking a variety of pain meds for 3 yrs and ore, she might have a resistance to them. I've seen it happen before. And it doesn't seem to matter what you take, how much or how often, it just doesn't get on top of the pain. Then sometimes it does and after a bit, suddenly it doesn't anymore. It's very frustrating.

Have they ever tried her on morphine? I'm puzzled as to why docs don't use morphine in the US. There's also sometimes a case for trying a cocktail of lesser drugs like Vicodin, Tylenol and codeine. We use that a lot in recovery here in the UK as a post op analgesic and it works really well.

 

[Texas]

Hi how is your mom doing I hope she is doing better. Just checking in...........my prayers are with her, hope she is doing well.........Kim

 

[charlieinnj]

Kim,
Thanks for asking. She had an epidural last week. She's had them in the past because of her back and it can cause referred pain down into her knees.

Overall, she's not much better at all. She made an appointment with her OS for this week because she's supposed to start back with PT next week and he's the one who ordered her to take 3 weeks off of PT when all this pain started up again.

She's going into 8 weeks post-revision....We all just wish she would catch a break and things would go well for a change.

 

[Texas]

I thought about you all alot . Sounds very frustrating. I wish I knew what to do, or I had any advice. Have they done tests like xrays, blood anything at all? I will keep her and the family in my prayers. I am so sorry and I wish I had something to add. Please tell her has a friend in Texas, she doesnt even know..But please hang in there.............Kim

 

[charlieinnj]

Kim,
Thanks so much....I'll be sure to tell her. I wish I could get her on the computer so she could talk with others going through what she is. But, she has a defeated attitude about everything and won't even try. I know it would make her feel she's not alone.

 

[Jamie]

One other thing you might consider. Chronic pain can sometimes cause clinical depression. You could speak to her doctor about that. It is possible that taking some anti-depressants could help her get back on track. Depression can also occur from lack of sleep....if she's not resting well, that could be a problem.

But still the bottom line is that you are not in the same city with your Mom. Because of that, it is VERY difficult for you to get the straight story or to help directly. I know this is difficult for you, but sometimes there are limited things you can do for someone long distance who is an adult and able to make decisions on their own. At this point, the best thing I think you could do to make yourself feel better about the situation is to speak directly with her doctors (of course, she will have to give the doctor permission to discuss her health with you). It's the only way you will know what is really going on.

 

[charlieinnj]

Well, last night was the first phone call with my Mom that she hasn't been sobbing the majority of the time. Yesterday, she met with her OS regarding her ongoing issues with pain and pain-control. He gave her (2) shots in the leg. But as usual, when I asked what he gave her, she had no idea what her used.

She also discussed her concerns with him about restarting PT and he was so pleased with her bend (120 degrees) that he didn't see the need for her to continue with PT. He wants her to keep doing what she's been doing on her own.

For some reason, a light bulb seemed to go off with her that she realized that it's only been 8 weeks since her revision and since her OS said he wanted her 'goal' to be 125 degrees, she seemed to be in good spirits after the visit. At least as of last night, her knee was feeling pretty good for once. Hopefully, if it was due to the shots, I hope they are effective and don't wear off in a day or so.

I preached the mantra of not pushing herself and setting unrealistic expectations of where she "thinks" she should be at his point in time.

I've seen mention to advice of taking 800 mg of Motrin, 3X day here on the board but can't remember if it came from one of the moderator's. Is that a good dosage?

Other than that, I preached to her about rest, ice and elevation. I'll keep everyone updated....please Mom in your thoughts and prayers!

You guys are the best!

 

[Jamie]

Wow, this is REALLY good news!!! I've had your mom on my mind the last few days and am thrilled to hear that things have improved. Here's hoping it continues. It is a difficult situation to be away from someone you love who is in pain....so hard to handle. You're doing a great job of keeping her on the right path.

 

[Josephine]

charlie, I'm only 8 weeks as well and have about the same ROM. I think she's doing absolutely fantastic! Especially considering it's a revision. Please tell her she's almost keeping up with me! If she does much better, she'll be a unique patient altogether!