TKR Possible 2nd MUA and possible referral needed

[Jamie]

Re: My complications s/p LTKR

Hi, Jill.....I'm sorry you are going through this bad time. I hope things get righted quickly and that you can move on with your recovery. In the meantime, here's a big ((((HUG)))) and I want you to know that we're here for whatever support you need. Please let us know how you are doing. I care about you.

 

[maryo52]

Re: My complications s/p LTKR

Jill, Hope you are able to keep your spirits up. I look forward to hearing back about your EMG.

 

[Kel]

Re: My complications s/p LTKR

So sorry to hear about this. Hope it all gets worked out and you can get on the road to recovery quickly.

 

[Jill0606]

Re: My complications s/p LTKR

Hi All,

Well I had my EMG and nerve conduction studies yesterday morning. Not fun. The only way I can explain it was like being “tasered” deep into the groin… 4-5 times on each leg. Because the person administering the tests was an MD, he was able to give me some vague info as he went along – I will get the official results at my follow-up appt on the 29th.

Anyway, the news wasn’t great. I have “significant femoral nerve damage” on the leg that had the TKR. After he finished the studies on my legs, he said that he needed access to my back. When I questioned why he said that the studies from my leg showed a problem with my spine as well. He poked and prodded a few times (in the general area where the epidural was placed) and said things were positive there as well, but that he wasn’t a spine specialist and the results would go to my doctor. He did not believe, however, that the spine was what was causing my complete inability to lift my leg/foot.

When I asked what the deal was long-term, he explained that if this nerve regenerates itself it does so at the rate of 1” per month, which would mean from the top of my leg to my knee… it would take “a year or more” to get function back. I kept it together in the exam room but started shaking and blinking back tears as the (not so sympathetic) secretary was taking my co-pay and having me fill out all the paperwork I didn’t get to do before the test. I got out to the waiting room where my son was waiting for me, and I lost it.

So now I’m waiting for the 29th to get the official test results – and hopefully some plan of action. I was trying to explain to my husband last night how frustrating this is, how much I am regretting the surgery at this point and that even if I had the ability to bend OR lift it… just one or the other… I’d feel better. I want to be able to drive.

Okay… so that’s my person story. It’s always therapeutic to put your feelings down on paper. As always, thanks for “listening”.

 

[maryo52]

Re: My complications s/p LTKR

Ohmygosh Jill! I am so keenly aware now that no matter what the rates of infection and other complications are, there are those who end up with the short straw, and honey, this is what's happened to you as far as nerve involvement.

I have a meltdown almost every day, and so sat my son down who had just gotten home from college and just laid out what I was struggling with. He helps take care of me, such as getting up today at 8:30 instead of 3 in the afternoon to drive me to a hair appointment.

The ray of hope I see in your scenario is that you are having complications to the degree that you will (hopefully) receive a comprehensive evaluation and some options to consider. I have a minor nerve issue and it's not even being investigated and probably won't unless time doesn't take care of it.

Please keep us posted and feel free to vent frustrations. It helps all of us feel less alone.

 

[Jamie]

Re: My complications s/p LTKR

Jill, I am so sorry that you are going through all this. It is true that the percentage of people who have problems with joint replacements is very small, but that doesn't matter AT ALL if it's YOU who is in that group! Just know that we are here for you as you continue to find out more about what all this means in terms of recovery. Please DON'T give up and think things are hopeless. I don't believe that for a minute and it's important for you to keep asking, checking, fighting and working toward answers and improvements.

Don't hesitate to lean on your BoneSmart family during this time. We care about you and will hold you close in our hearts and in our prayers.

 

[Josephine]

Re: My complications s/p LTKR

Actually, no-one really knows for sure how nerves regenerate or how quickly/slowly. It's different in everybody anyway.
But the fact remains that most of these nerve damages tend to resolve themselves over time.
Try not to despair.
.

 

[Jill0606]

Pain meds - How much? How long?

Hi All,

Just looking for some of your experiences. I will be 7 weeks total LTKR this week, and I'm still taking my Percocet regularly - even moreso over the holiday as I was up and moving ALOT with lots of pain and pitting edema.

A quickie review - I still only have between 20-30 degrees flexion in my knee and I cannot lift my leg at all - having found out last week that I have significant femoral nerve damage from the surgery and there is something "positive" with my spine causing issues as well. I don't get the official results until Thursday.

My OS has only ever given me a script for 6-8 days of meds (max 10 per day) with no refills, which means I have to stay on top of when they will run out and send my son to the office (30+ min drive) to pick up the refill. Last time I was in the office he wrote me a new script but didn't tell me he was cutting me back to 6 pills per day. I now typically take them at 9am, 3pm, 9pm.

If I am sitting around not doing anything at all except elevating and ice then I'm okay, but I started PT again last week and am seeing him 3 times per week. He's working me hard (trying to keep the MUA at bay!!!) Of course I have orthopedic pain and nerve pain after my appointments which I know is normal. How long can I expect to continue needing meds? I am noticing that if I don't take my meds after 6 or 7 hours, my entire body aches deeply. Is this a sign that my body is used to the med and is going thru a type of withdrawal?

Any thoughts? Thanks in advance.

 

[maryo52]

Re: Pain meds - How much? How long?

I am beginning to wonder if there are any orthos out there who understand how much pain we're in. Jill, my ortho says (out of one side of his mouth) maybe I can space the pills out, wean off, fall back on tylenol (which never worked for me), and out of the other side of his mouth he says I need to step up the PT.

There are stiff regulations regarding some narcotics and so they can only give you one scrip at a time, and it has to be the actual paper. It can't be faxed or sent in electronically to the pharmacy.

My primary MD has become my pain control ally. That's who refills my pain Rx.

Jill, you are up against more than your share of challenges. You deserve full support and help. I think if you don't get what you need from your ortho or PCP, then I'm told a pain clinic is another resource.The deep aching is pain, honey. It's not drug withdrawal.

 

[Josephine]

Re: Pain meds - How much? How long?

Quite so, Mary. Jill, just stop worrying your OS, go to your GP and if he won't help, go to a pain management clinic. You can't do this without adequate pain control.

 

[Jamie]

Re: Pain meds - How much? How long?

Excellent advice, Mary.

Jill, my heart goes out to you with all you have to deal with. I suggest you contact your primary doctor quickly to see if he/she can help you with your prescriptions. If not, check the Yellow Pages to find a pain management clinic you can go to. You need help not someone who is trying to cut you back on pain meds.

That deep pain you are feeling when you spread out your pain meds is....deep pain! It's nothing to do with addiction. It just means you are undermedicating ... which you knew!

It's considered normal to rely on pain meds for several months after joint replacement surgery. And that's if everything goes great. When you throw in nerve and back problems....it certainly may increase the time you need them.

On a side note, please don't fear an MUA if you need one down the road. It is not the result of anything you did or didn't do. Some people just get the adhesions (scar tissue) more than others. Even a person who tends to scar more may or may not get adhesions in one surgery, but not in another. There just is no way to predict how it will work out. An MUA may hurt for a few days afterwards (pain can be controlled, though) and afterwards your ROM is most times significantly increased.

 

[Jill0606]

Re: Pain meds - How much? How long?

Thank you all for your replies. I am seeing my OS on Thursday. I'm very interested to hear his "take" on my EMG/NCS results. My husband is going with me to this appointment. He is very frustrated with everything regarding this surgery and I know he will speak his mind, but hopefully bites his tongue at times as well.

I have had several people tell me I should get a second opinion, as well as others who have told me I'd be insane to go back to this OS. I will admit that I am losing faith in my OS... and I have sent an email to another OS asking if he would even be willing to see me under the current circumstances.

Jamie - thank you for your comments regarding the MUA. I have read quite a bit on it, both here and on the internet, and now that I am more educated, I'm not as terrified. One worry,however.... I've read numerous times that the femur can possibly be broken during MUA. My femur was already broken during the TKR, so will that make me more vulnerable to it breaking again? Any thought would be appreciated.

Thanks again everyone. I am not feeling nearly as alone as I had been the last couple weeks. The fear of just not knowing can be terrifying at times. I'm grateful to have you guys in my corner.

 

[Jaycey]

Re: Pain meds - How much? How long?

Hi Jill, please let us know how your appointment goes.

I agree with everyone this pain you are feeling must be controlled - otherwise there is no moving forward. If your OS is being stubborn time to turn to your GP or pain management specialist. Your body is not getting used to the pain meds and you are not going through withdrawal. You have post-op pain that needs to be addressed.

Good luck on Thursday!

 

[maryo52]

Re: Pain meds - How much? How long?

Jill,

You're going to be getting more info on Thursday as I remember it. It's good that you're not waiting to explore options. You can even make appointments with several other orthos for second opinions. Doesn't mean you have to keep them. It's just a good Plan B.

I think it's great you have a husband who is ready to speak up on your behalf, and I wouldn't worry too much if he maybe goes a little overboard. When my mom had a major surgery three years ago, I watched in disbelief and denial a sequence of deficiencies in her care that really threatened the success of her recovery. By the grace of god, my uncle who is a retired physician in Boston called me to check in. After I reported what was going on, he uncharacteristically became very angry and basically instructed me to give them hell. It in essence gave me permission to become the bad, dreaded family member I was trying not to be. The medical system (at least in the US) has a tendency to marginalize assertive patients/families.

I hope this week you get some info to help you make decisions that will then move you closer to health, sanity, and well-being. I'll be looking for your report later this week.

 

[Josephine]

Re: Pain meds - How much? How long?

One worry,however.... I've read numerous times that the femur can possibly be broken during MUA. My femur was already broken during the TKR, so will that make me more vulnerable to it breaking again?

Remind me how it was broken during the TKR. I don't recall this event.

 

[NM Diver]

Re: Pain meds - How much? How long?

Jill, Have hope. I am a bit ahead of you and apparently have a very aggressive OS :snk:. I talked to my GP about my pain meds. He was very happy to supply me with a large script for Lortabs (with refills!!!). On my last visit to my OS I told him but he still wrote me another script for Percocet saying to take them if I needed. Take them as much as you need.

As a general note, I am also doing PT 3 times a week. Because of the holiday and an issue with my insurance, I have missed my last PT session and have only been doing what I can at home. Suprisingly to me (not really as I sorta knew it) PT has been causing some swelling and pain and I actually feel better having missed it along with a greater perceived ROM (perceived to me since it doesn't hurt)

 

[Jill0606]

Re: Pain meds - How much? How long?

Hi Josephine,

It was never mentioned to me while in the hospital that my femur had been broken during surgery. I had an "emergency" appointment 11 days after my surgery due to my pain not being controlled. My husband went to this appointment with me. During our discussion my OS mentioned that my TKR wasn't a "normal" or "standard" surgery. He explained that he removed the ACL (which I get due to the placement and it being "in the way") which was replaced with something synthetic I guess. He then explained that my PCL was very short and wasn't long enough to connect the top of my leg to the bottom and go around the new knee, so he had to "break my femur" to get it to fit. I was a bit stunned that I hadn't heard anything, and it wasn't until after that this really didn't make sense to me.

I mentioned this to my at-home PT the next day and she said that it was news to her as well, and that no where in my OR notes was there any mention of my femur having been broken. She called my OS to get more info and her calls were never returned.

So.... I'm a little confused by all of this. Hopefully my appt on Thursday answers my questions.

Thank you again everyone for your compassion and guidance!

 

[Josephine]

Re: Pain meds - How much? How long?

Okay - I can address this. He mis-spoke himself in the way he described it. In fact, the whole thing was nothing to make much of at all. He was just trying to give himself an heroic aura, like they always do when they tell the patient afterwards that "this was the worst (hip/knee/whatever) they've ever seen"! :th_heehee: Wish I had a quid for every time I've heard that said!

It happens often that the cruciates aren't up to the job and have to be removed. They deteriorate just like the cartilage does. Then a type of prosthesis called a 'cruciate sacrificing' is used that takes over the function of the cruciates. You can see it here. The remnants of the cruciates have to be removed and to do this, a special bone chisel is used to remove the bone to which they are attached. This will have been the 'break bone' action he was referring to. But incorrectly as it's very a common procedure and many surgeons choose to use cruciate sacrificing knees as a matter of course. I have such a knee myself.

So to answer your original question, this has no aftermath in terms of the bone being vulnerable. And I can assure you that, whilst it is one of the mishaps listed as a complication for MUA, and it is so in theory, I have been present at literally hundreds of these over the years and have never seen one get broken. Actually, I've never even heard of one having been broken. It's a bit like that caveat they give you about a complication of surgery or anaesthetic being death! They are obliged to point it out but it's so uncommon it's really not worth worrying about.

 

[Jamie]

Re: Pain meds - How much? How long?

Jill, please don't worry about the possibility of your femur breaking during an MUA. I know there is information out on the web that makes it sound like this is a huge risk, but it is not. Not one BoneSmartie who has had an MUA has had this problem.

 

[Jill0606]

Re: Pain meds - How much? How long?

Wow! Thank you Josephine. Why the heck couldn't my OS explain it like that? He has had me guessing, second guessing and guessing again. Thankfully, he never said "the worst he's ever seen" - given the fact he did a couple years at a hospital in NYC where the "worst of the worst" go. I just wasn't a "straight-forward typical" TKR. I feel better about everything now. Also... you all have me a lot more relaxed about the possibility of an MUA.

I have, however, lost a bit of faith in my OS. I'm feeling like Thursday will be the determining factor as to whether I decide to stay or not. I totally get that things can go wrong and mistakes can be made... nobody is perfect.

However, between the tourniquet issue and nerve damange, the new problem with my back/spine (which I haven't heard yet if it is related to the epidural or not), and my issues with peeing (I have only been able to "trickle" since surgery - someone said the catheter can "shock" your bladder... but I'm starting to wonder at what point does the "shock" wear off??? - its been almost 7 weeks).... do I just call it a day and go with another OS and hospital altogether?

Everyone around me thinks I'm insane to even give my OS a chance given the fact he has blown off several of my calls, ALL of my at-home physical therapists calls when she was calling to tell him there was a problem, told me take 1800 mg of Advil while taking Coumadin... and sadly the list goes on... but the fact is that he has a great reputation. Hmmmm.... Could it be that I just have horrible luck??

Anyway.... thank you again... ALL of you. Everyone who took the time to reply and offer words of advice and encouragement... it has helped me more than you know.