Bilateral TKR March 26, 2014

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I went back to work in early May and so with this and two kids have had limited energy to do much, including posting/reading here. Welcome to my pity party! I do have nerve damage in my left quad. and was finally able to lift it about 5 weeks ago. I have to use a crutch on the right side as I have almost fallen several times. My left knee just buckles, meaning that it unexpectedly juts forward and my foot goes out from under me. This of course has impacted my progress. My left leg takes longer to "warm up." My right knee is ready to walk and bike and my left leg is holding it back. I am trying to accept that this takes time. My orthopedist still has me on a pain medication clock and wanted me to be off prescription medications by 12-weeks, but was willing to go a few more weeks. He wants me to be off all Percocet in 3-4 weeks. I was down to 6 Percocet a day over 5-weeks ago (my own doing) until my OS's PA unexpectedly yanked me off of 10mg OxyContin bid and I was then lectured by a nurse on addiction (I have also received another lecture by another nurse who told me that their policy is to have all patients off all prescription pain meds. at 12-weeks). I was told to up my Percocet. I was back up to 10 a day but got back down to 4-5/day in the last 3 weeks, which frankly is not enough pain management. My OS asked me at my most recent appointment if I was taking regular Vicodin prior to surgery (which I wasn't) which felt like he was trying to find a reason why I am reporting pain much longer than most of his patients. I am waking up at night with stabbing pains and my wonderful husband will get me ice packs several times a night. My lower legs and knees deeply ache at work which in due in part, I believe, to swelling. My lower legs have hurt to the touch (e.g. when I put lotion on them) since day one, which I think is also due to swelling. I am continuing in PT and have perfect extension and can get to 130 degrees flexion after warming up on the bike or shuttle. My PT is great and insists I not overdue exercises. For example, bike riding 10-15 minutes twice a day and no more. Then a core strengthening exercise and double toe raises. I am discouraged that I am swollen all the time. I continue to ice and elevate. I also have limited energy. I am just not getting things done on my to-do list and I have a very involved husband who has taken over the major home chores. I know I should be more patient, not a strength of mine. I accept that I won't be "back to normal," but I feel I should be further. I'm also sick of being told that I have low pain tolerance. I have chronic migraine and gave birth to a 10lb baby, after 37 hours of labor, with no pain medications so clearly can handle a lot of pain. Now I feel like I am being judged and assessed for being drug seeking. Thanks if you read this far!
 
Jillybean, Welcome back, sorry you are having such troubles.
Sounds like you have overdone it, being back at work already, Exercycle 2x a day, and other exercises you are doing are too much. #ODIC over did it club
You should talk to your primary MD about taking over your pain medication, or even a referral to a pain clinic that can better address your pain. Having you go cold turkey is cruel.
Seems your OS is focused on your pain meds, and not what is causing your pain. May be time to start looking for an OS who specializes in revisions, they are best positioned to determine what the problem is.
Have you had a nerve conduction test for your nerve damage?
Ask your PT what you can do for your hypersensitivity, and pain. Ask her about brushing, e stim, manual therapy, joint mobilization etc to desensitize your leg.
Work is enough exercise, cut out the exercises and focus on the mantra, Rest, Ice, Elevate, and Medications on Schedule.
Good luck and keep us posted on how you are doing.
 
Oh, how I wish I could be there to tell you to SLOW DOWN and SIT DOWN more. I am a 14 months out and even now am not 100% back to all I did before. BTKR recovery is not a contest you have to win, or training that you must do to be fit, etc. Be kind to your knees and yourself.

It's tough to feel patient. I spent many months thinking I was "behind" everyone else. Yet when I visited my OS last week, he was very pleased (to put it mildly) with how my knee worked, how normally I walked, etc.

The day WILL come when you can do more -but that day won't be for awhile.

As for pain, stop asking your OS for it. In my experience (and others on BoneSmart), GP's or pain specialists are better for your ongoing pain issues after about week 6. Think about it: A GP sees more people in day-to-day pain than the OS does, who thinks about post-surgical pain. My OS was fine but pain meds made him nervous in general - my GP knew my entire pain history and did a much better job of helping me out. Let those people lecturing you about pain have their own knees sawed up & glued back together & then see what they say about pain tolerance!

Desensitizing: I had to force myself to massage my swollen knee area and in particular my scar (which grossed me out entirely at first).

I had night problems at first (though I wouldn't describe my pain as stabbing). I finally got back to something resembling a decent sleep pattern at about month 7-8.

So - hang in there!j
 
Hang in there @Jillybean . You have wonderful numbers on both extension and flexion. At least some of your pain is likely nerves coming back to life. Swelling will go away! I wish I had the answer on pain management in the meantime. All I can do is echo the suggestion that you talk to your GP/PCP. He or she should be more sympathetic and helpful!
 
Sorry to hear about your issues. So many folks have had trouble with their OS wanting them off pain meds - it is really something that needs to change. People don't want to be taking drugs - they just want to be pain free - and we shouldn't be made to feel like addicts.

My BTKR was 3/20 and I totally understand your frustration and I don't have to work. While I haven't had the buckling or night pain issues, I'm frustrated at the amount of pain I still have rising from chairs, etc. and how tired I get, how hard it is to walk very far. My flexion is only 110 and they've released me from PT saying there's nothing more they can do and for me to go to the swimming pool to work on it. I am SO ready to be pain free and normal (whatever that is) but I guess it's going to take as long as it takes.

Do talk to your primary care doc about your pain.
 
@Jillybean --- I empathize with your pain management issues. My OS only prescribes enough Hydrocodone for 4 days at a time, then I would have to call and literally beg for more. I've tried to help myself by supplementing with Tylenol and of course icing and elevating and gentle massage over the incisions area. Like you, I had BTKR. I am 42 days out. I think that I should not have to be so stingy with my pain meds in order to be pain-free. It is quite frustrating isn't it? Unfortunately for me because of a switch in insurance causing me to have to go to a brand new GP. This GP does not know me at all so if I go to her to ask for pain meds I may be met with suspicion?!!! Not sure. I have not tried that route yet strictly because I have only seen my GP once for the pre-surgical eval.

The switch in insurance company was something beyond my control!

Life can get complicated at times, does it not?

I wish I have advice to share with you but all I can say is I understand your pain and am praying and wishing for you to be stronger and more comfortable. A big hug to you.

Wellness in Virginia
BTKR 05/05/2014
 
Thank you everyone for your amazing replies. They have been so validating. The reminders to slow down are also helpful. I thought I was doing pretty well, but I could go a bit slower. The PA in my OS's office told me that I have one-two months before I will reach the most flexion I will have. I just ignored him.:sigh: What a dope! You are all right that I need to see my GP. It just ticks me off that orthopedists don't accept a range of pain for THEIR patients and that their is no hidden or sinister agenda for those of us who need pain medications for longer. I just want to be reasonably comfortable. I hold no illusions that I should be in a state of bliss, just able to avoid profound pain and able to do PT effectively. You are all the best and have no idea how much your words and the time you took to post them mean to me! No one else understands this like all of you!!! Thank you, thank you, thank you!!!!:loveshwr:
 
Pumpkin,
You wrote, "May be time to start looking for an OS who specializes in revisions, they are best positioned to determine what the problem is. Have you had a nerve conduction test for your nerve damage? Ask your PT what you can do for your hypersensitivity, and pain. "

Are you thinking I may be looking at more surgery or just that a specialist in revisions sees more than the typical OS? I have not had a nerve conduction test. My OS won't admit there is a problem. He just says the nerves are "stunned" and that BTKR's heal differently. This is more than a difference in healing. My PT believes it is nerve damage. I did neuromuscular stimulation for a month and I think it really helped. I am interested in your thoughts about my hypersensitivity. What makes you think I am hypersensitive? I hope I don't sound defensive. I am truly wanting to learn from your obvious experience. Other than my PT encouraging me to listen to my body, along with multiple modalities (ultrasound, cold laser, incision and tight muscle massage) what could she do to help with my pain? She has encouraged me to use my crutch as the last thing we want to happen is for me to fall and she doesn't want me overdoing exercises in or outside her office. I am really intrigued by the joint mobilization and brushing (I'm familiar with it being used in kids with sensory issues, but didn't realize it could be used for pain issues). Thanks Pumpkin!
 
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