MUA [BILATERAL TKRS] The Fun Begins

[2hips2knees]

Thank you so much, Ellen @NetballKnees, for your encouragement. I am sorry to hear your other knee is doing so poorly. That was the main reason I did both knees at once. I felt like my recovery would be much too difficult without the other knee's support and that it could potentially completely give out on me like my right knee following my left hip revision. I think if your new knee is strong enough, you might consider going ahead and having the other one replaced. I was afraid of having my left hip revision only 4 months after my right hip replacement, but much to my surprise, I rarely even thought about my right hip. It supported me just fine! The knee surgery is tougher though.

I am amazed at your ability to stand on your knee for 45 seconds! I have been working on just standing on both legs (in front of my lift chair with my hands barely touching my walker), and the pain kicks into overdrive almost immediately. The therapist keeps telling me that the more I'm up, the more I walk, the easier it will be. I really try, but it doesn't seem to be getting much better. I have been so sedentary for so long because of joint problems, trying to stand straight feels completely unnatural... and very painful. I know... patience.

Friday I told the PA about my groin pain (which is worse today), and she said they will XRay my pelvis when I go back February 17. I am trying to ice the area now, and I'm backing off of leg lifts for now because they just aggravate the problem.

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[RimRoc]

Just "by the way", I've always thought of scar tissue as the tough, collagen fibre material that the body forms to unite tissues damaged by trauma (i.e. the surgeon's scapel). It forms where there was a break in normal tissue continuity. In contrast, adhesions form in areas beyond the initial damage zone, connecting scar tissue to otherwise healthy tissue where there wouldn't otherwise be a connection. So your scar is that cute zip line down the front of your knee, both at the surface and just below. If you have adhesions, it is would be where the scar tissue formation has expanded outward, connecting the scar to stuff that shouldn't actually be connected. Scar tissue is necessary for healing; adhesions are not wanted at all!

fyi, we usually hear about adhesions in the context of abdominal surgeries where, sometimes years after an abdominal procedure, these areas of tough connective tissue will form within the abdomen and actually strangulate the bowel (producing a small bowel obstruction, requiring further surgery...). Fortunately, not gonna happen with knee surgery!!!

 

[2hips2knees]

Thanks, @RimRoc, for the explanation. So when the surgeon said he said that scar tissue was inhibiting my ROM, I shouldn't be too concerned since I am still improving. .. albeit very slowly?

Also, have you heard of someone developing a valgas knee after surgery? It is most noticeable when my legs are dangling.

 

[RimRoc]

@2hips2knees - Hi there!. Sorry I can't help on the valgus knees question. It seems to me that valgus or varus knees wouldn't matter much while sitting or lying. All that really matters is alignment during weight bearing.

And you DO want to mobilize that scar tissue! Ask your PT guy to show you how.

Keep up the good hard work. You will get to where you want to go!

 

[2hips2knees]

Oddly, the valgus knee makes thing like knee extensions and using the restorator awkward too. I am hoping this will get better over time. Thank you for the encouragement, @RimRock.

New measurements today only show 2 degrees of improvement in the left knee and 5 in the right since last Friday. Disappointing. The therapist brought up the CPM again, and I really don't want to try it again. He also mentioned a dino-splint?

Still waiting on the "magical scar tissue cream. "

BTW I still can't bend enough to get in the shower. :( Looks like hubby is going to have to wash my hair in the kitchen sink this weekend. My hair is driving me nuts!

 

[2hips2knees]

@Josephine or @Jamie or anyone else who might know... Tonight I received the compound I am supposed to apply to my knees four times a day. I guess I will start using it in the morning. I am a bit concerned about the ingredients though. They are shortened names, so I may be wrong but they look like a combination of some pretty strong medications if I am interpreting correctly. And I don't understand why any would work in helping to break up scar tissue. And I assume the doctor wouldn't order it if there were an interaction with my hydrocodone? The ingredients are: AMANT/AMITRIPT/GABAPENT/CLONIDINE/CAR.

Any thoughts? Thanks!

 

[Jamie]

The best thing to do is to contact your pharmacist (the one who compounded the drug for you) and ask your questions. I'm not an expert in drugs by any means and compounding is an even more specialized field. If you are at all worried about an interaction with the hydrocodone, wait until you talk with the pharmacist before using the compound. One day won't make a difference and you need to know what you're using.

I have my doubts that a topical medication will break up adhesions (if you have them), though. Just my jaded opinion.....

I'm going to tag @Josephine too, as I'd like her to read about your progress and comment.

 

[RimRoc]

Regarding your compounding cream for scar tissue: somewhere in the stuff you received from the pharmacy should be complete content info. With full drug names and concentrations. Any US dispensing pharmacy HAS to provide that info to the patient.

The good news/bad news is that most drugs have pretty limited ability to be absorbed thru the skin , so there won't be much floating around the body and thus there is little reason to be worried about interactions with other meds or systemic side effects.

My best guess is the drugs are amantadine, amitriptyline, gabapentin, clonidine, carbamazepine (or maybe carbidopa). All those listed drugs fall into the neuro category, meaning they work by modifying something about the way nerves work and may or may not affect specific neurotransmitters (i.e. dopamine, seratonin, etc).



None of these compounds is a narcotic and none is likely to interact with hydrocodone at all, especially at the low systemic concentrations that come with topical application. If you look up the side effects of each, they will all include sedation and warnings...but that comes with systemic dosing not topical dosing.

This sort of compounded cream is an 'off label' use of an FDA approved medication so you won't find a lot of useful info about this application on the big drug websites. I am unaware of formal research that would be evidence that this sort of topical application works...but there is usually anecdotal evidence that it helps some people, so that is why you doc would have prescribed it for you. Actually, I have seen this combo prescribed via compounding cream for joint pain for an elderly female with bone on bone arthritis in her shoulder. It was mildly helpful.

You can probably expect two things: some benefit from the simple act of massaging the skin/join firmly four times a day and some local relief of pain. Now the pain relief is a big deal because that is the barrier to you being able to loosen scar tissue via movement. So if the doc said to rub this in before exercising -- give it a good hard rub and the exercise to the most tolerable level.

To my knowledge, none of the ingredients is likely to have any direct effect on the physical breakdown of scar tissue.

Of course, you must be comfortable with any physician recommendation so DO ask any questions you need to ask of your doc and pharmacist. In the meantime, you can give it a go and see if it makes a differences. In case they didn't tell you: always wash your hands before and after applying a cream like that, don't get it in your eyes, etc, etc. (that's the nurse part of me talking...sorry)

good luck and I hope it works for you!

 

[2hips2knees]

Thanks, @Jamie and @RimRoc. Oddly, there was no complete listing of the ingredients in the packaging anywhere. But I did call the pharmacy and was told there would be no interaction with my hydrocodone, just as you thought, RimRoc. I am hoping that the additional pain relief will help at least some in getting better ROM.

Sadly I showed no improvement at all in my ROM this week. It is the first time my regular PT measured (usually it is his supervisor), so he said that could have made a difference. I'm still really frustrated that I can't get in the shower and even getting in the car is extremely difficult. Walking is some better, but I am nowhere near being able to do without the walker.

Yesterday I started trying to use the idea of a JAS system in my wheelchair. I had first become aware of the device through Bonesmart, and I figured I could get the same benefit by locking my wheelchair at the point of discomfort, holding for 5 minutes, and then pusing forward slightly more... increasing incrementally for 30 minutes as tolerated (while working on a puzzle). Yesterday was my first time. My therapist thinks that exercise and the restorator will be my biggest helps... and the new topical ointment. .. maybe that will help too.

I see the surgeon Monday, but I don't think he will mention MUA until I give the topical cream some time since he really believes it will help.

 

[Josephine]

Tonight I received the compound I am supposed to apply to my knees four times a day

For what reason? I'm not a great fan of topical agents (medications that are rubbed in and supposedly absorbed through the skin) primarily because they don't work!

AMANT/AMITRIPT/GABAPENT/CLONIDINE/CAR

so far as I can tell, these are
AMITRIPT - amitriptyline used for pain and sleeping
GABAPENT - gabapentin (also known as Neurontin) used for neuropathic pain and seizures
CLONIDINE - used for a blood pressure as it relaxes the smooth muscle of blood vessels, causing them to widen, or dilate. This reduces the pressure of blood flow through the arteries. Also used for menopausal hot flushes!

No idea what the other two are.

 

[2hips2knees]

@Josephine Thank you for the medicines explanation. The surgeon has been trying to get me the compound since January 20. I only received it last night because of insurance holdups. When I saw him he said I have significant scar tissue, which he believes the compound will help with. Originally he told me the compound would serve 3 purposes: to break up scar tissue, numb nerves, and deaden pain. We had to switch compounding companies, so I don't know if something has changed.

Even in rehab the facility doctor told me he thought I would eventually need MUA. Both of my PT's have always had concerns that my surgeon would recommend the MUA, but so far he has said as long as I continue to make baby steps forward, we won't discuss MUA. My concern is that my baby steps have been getting smaller and smaller... and this week there was no improvement. My surgery was December 10, and I only have 76 degrees ROM in both knees. In fact, that's a loss of 2 degrees in my right knee.

So I am praying the topical compound will somehow work. I see the surgeon Monday, and I think he will want to give the cream some time before he recommends MUA.

One interesting thing is that I was able to make several forward rotations on the restorator this afternoon for the first time. Could the cream have worked that quickly. .. after only 2 applications?

 

[Josephine]

No! In fact I would be interested (for which read sceptical!) if is works at all. But I would love to be proven wrong!

Actually, considering you are only 9 weeks out, I think it's a little early to be thinking of adhesions. I think your problem is much more likely to be swelling and pain.

So I have some questions to ask you:

1. what are your pain levels right now? (remember the 1-10 scale: 1 = no pain and 10 = the worst you can imagine. And don't compare this with the bone-on-bone pain you had before surgery!

)

2. what pain medications have you been prescribed, how much are you taking (in mg please) and how often?

3. how often are you icing your hip and for how long?

4. are you elevating your leg, how often and for how long?

5. what is your activity level? What do you do in the way of housework, cooking, cleaning, shopping, etc., and

6. what kind of PT/exercises are you doing? How much and how often? (and detailed details would be appreciated, please! Reps, sets and session and all that)


You should also read these articles again because this is such early days and there is no need to be getting fretful about losing 2 degrees! 2 degrees is nothing. It's about the thickness of a credit card! You can vary 5 degrees plus or minus just by setting the goniometer slightly differently!
It's never too late to get more ROM!
It's Worth the Wait for ROM

 

[2hips2knees]

1) Pain can be anywhere from 0 to 7, though 7 isn't often these days. My worst pain is usually when I walk, especially after sitting for a while or trying to walk after stretching in my wheelchair.

2) During the day I take 2 hydrocodone 10/325 pills every 4-5 hours. At night I take one every 4-7 hours. At bedtime I take one Temazepam 15 mg. I have an app on my phone that I use primarily for my pain medication during the day.

3) I have a cryo-cuff, which I use for 20-30 minutes 3 times a day. Sometimes more often, sometimes less.

4) My main chair is my lift chair. I do exercises in it, and let my legs hang as much as I can, but when icing, resting, or sleeping my legs are elevated. In the morning and in the afternoon I sit in my wheelchair and work on a puzzle for 1 to 3 hours. Otherwise I am in the lift chair with my legs elevated.

5) I don't do any chores. My only job outside of therapy is to entertain my 4 year old after my husband brings her home from work while he gets dinner ready, etc. It is a job I enjoy thoroughly. That involves my sitting in one place or another, but most often in the lift chair with my legs outstretched. I try to take a short walk every hour (even if just to the bathroom and back) unless I am asleep. I don't cook or clean. Getting in and out of the car is a challenge, and I am still unable to get in the shower.

6) Twice a day I do the following:
2 sets of 10 while lying down: leg extensions, moving legs out to sides, leg lifts (with a cord to help with the left leg because of the groin pain).
10 heel slides followed by one 20 second calf pull and the repeat. I then do the same on the other side.
20 heel pumps (I also do these throughout the day. ) I tighten my knees 20 times for 5 seconds each time with a pillow between my legs. I use my safety belt to wrap around my knees and try to push outward 20 times.

I also do quad tightening exercises throughout the day.

Yesterday I started trying to use the idea of a JAS system in my wheelchair. I had first become aware of the device through Bonesmart, and I figured I could get the same benefit by locking my wheelchair at the point of discomfort, holding for 5 minutes, and then pusing forward slightly more... increasing incrementally for 30 minutes as tolerated (while working on a puzzle).

I try to get up every hour to walk a short distance. I sometimes just try to stand a little. I use my walker for all standing and walking.

The physical therapist comes in 3 days a week and adds weight to my knee extensions, helps with tightening and contracting to help with ROM, works on walking and balance and stability exercises. March in place 20 times, legs out to the side 20 times, standing on toes 20 times. He also massages my knees.
.....
I understand that 2 degrees mean nothing. It's just that my improvement seems to be slowing significantly, and it seems that lately I am seeing stories on Bonesmart of people with my degree of ROM or even more at this point who have had or are facing MUA. I have no intention of doing anything before 12 weeks, so it's just my nerves talking (and my therapists). And the supervising therapist wants to see me try the CPM again or a Dinasplint (and I don't want to do either). At least the other therapist agrees with me there.

Thank you for posting those links again... I needed the reminder. I guess I am still early in the process... And if my surgeon is satisfied with baby steps, I should be too! Thanks for the encouragement, Josephine.

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[2hips2knees]

@Josephine I forgot to add to my daily routine that once or twice a day I use a restorator, which until yesterday meant peddling back and forth repeatedly and doing a couple of backward rotations. Since yesterday I have been able to do a few forward rotations as well. However, I mostly pedal back and forth. I only do this for probably 5 or 10 minutes at a time.

 

[Josephine]

I have a cryo-cuff, which I use for 20-30 minutes 3 times a day. Sometimes more often, sometimes less.

another person fixated on this 20-30 minutes thing! Ice more and longer. Any time you are seated and resting, ice. 20-30 minutes is not very effective.

And you are doing an awful lot of exercises. Are your knees swollen?

Twice a day I do the following,
2 sets of 10 while lying down: - try 2 sets of 5
- leg extensions
- moving legs out to sides
- leg lifts (with a cord to help with the left leg because of the groin pain) - if you have groin pain then don't do this exercise
- 10 heel slides followed by one 20 second calf pull and then repeat - do 5 heels slides but do them every 2-3 hours and only ever to the point of discomfort.
- tighten my knees 20 times for 5 seconds each time with a pillow between my legs - do 10
- use my safety belt to wrap around my knees and try to push outward 20 times - not a very productive exercise at this stage. Maybe after 12 weeks. Your muscles aren't weak, they are injured. Let them rest.
- quad tightening exercises throughout the day - not a very productive exercise at this stage. Maybe after 12 weeks. Your muscles aren't weak, they are injured. Let them rest.
- get up every hour to walk a short distance - every couple of hours would do just as well. You need the rest, elevating and icing more

The physical therapist comes in 3 days a week and adds
- weight to my knee extensions - you don't need weights this early in the game. They only increase the swelling
- helps with tightening and contracting to help with ROM
- works on walking and balance and stability exercises
- march in place 20 times - that's a bit demanding for 9 weeks out
- legs out to the side 20 times - same as this
- standing on toes 20 times - and this

But whether you want to question what the PT has you do is up to you. I certainly wouldn't do them.

 

[referee54]

I have a cryo-cuff, which I use for 20-30 minutes 3 times a day. Sometimes more often, sometimes less.

another person fixated on this 20-30 minutes thing! Ice more and longer. Any time you are seated and resting, ice. 20-30 minutes is not very effective.

I agree! THis is not the usual athletic icing type of activity---"20 minutes per hour"---I would ice longer and more often. Many folks here ice throughout the night!

 

[2hips2knees]

@Josephine and @referee54 Thank you for the advice. Yes, my knees do swell, though I notice mainly because of heat and stiffness rather than puffiness. (My knees have looked swollen for many years.) But I have been icing for shorter periods because the cryo-cuff is so cold. I have had crazy sensitive skin since the surgery, and icing for long periods is extremely uncomfortable. It's strange. Icing initially is soothing, but it doesn't take too long before it becomes painful.

I seemed to have had an allergic reaction earlier this week for the second time since my surgery to a pair of warmups I lived in before the surgery. No change in detergent. I thought this hyper sensitivity would have subsided by now, but it hasn't. I wear gowns all the time because I don't like the feel of pants rubbing across my knees.

The belt exercise is for the hip... The quad (VMO) exercises were ordered by my surgeon because coming out of the surgery he was concerned that I would have patellar tracking problems... possibly indefinitely. My kneecaps were slipping with even the easiest therapy and with walking after the BKR. We successfully used kinesio tape initially, but had to remove it when I had the severe allergic reaction to "something else" (seemed to be related to the CPM strangely). Since we started focusing on the VMO strengthening exercises, I have had no tracking issues with the right knee, and I haven't felt any subluxation with the left... though it still feels odd when I walk. My VMO muscles were horribly weak before the surgery (you couldn't feel them working at all), but the strengthening exercises were excruciating, so I just didn't do them.

I think he has me doing the standing exercises only when he is here to help with my balance and to strengthen my hip muscles. Do you think that's a mistake?

Sadly, the heel slides are my most difficult exercise. .. especially for the left side because of the groin pain. I usually end up using a type of exercise cord to help with the slides. But I will go for the fewer repetitions more frequently as you recommend. Walking every couple of hours sounds better too!

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[DogLoverx3]

my tkr scar is hypersensitive as well and i can't stand for any fabric to touch it. don't laugh, but if you put plastic wrap on your knee (either use some lotion to make it stick or, if u have a hot knee like me, it will stick on it's own) and viola'! you can wear your favorite sweats, jeans, whatever without it upsetting your knee! sounds weird, but it works!

are you putting a dishtowel or light cloth between your cryo cuff and your skin? that will help with the whole frostbite sensation..

 

[NuNe4Me]

are you putting a dishtowel or light cloth between your cryo cuff and your skin? that will help with the whole frostbite sensation..

Or even a THICK towel? When the cold sensation bothers me, I just go thicker and thicker.

 

[Josephine]

Yes, my knees do swell, though I notice mainly because of heat and stiffness rather than puffiness.

These are all forms of pain as in soreness, burning, stabbing, throbbing, aching, swelling and stiffness

But I have been icing for shorter periods because the cryo-cuff is so cold. Icing initially is soothing, but it doesn't take too long before it becomes painful.

Sounds suspiciously to me like you are applying the ice pack directly on to your skin. Is this the case? Because that is very dangerous, you could get a burn. Ice packs should only ever feel pleasantly cold. As others have said, adjust the thickness of the padding between your knee and the ice until you achieve that.

I think he has me doing the standing exercises only when he is here to help with my balance and to strengthen my hip muscles. Do you think that's a mistake?

No, probably not. Just stop if it starts causing more than discomfort.