TKR Meecies musings (questions, comments, maybe some venting here and there too)

[LorAll]

After my THR I had to go back to the hospital because my knee was so swollen, I could not bend my leg. When I was in emergency they thought I had a knee replacement.

wow! that's scary!!
how long did it take for the swelling to go down?
it must be hard to ice after hip surgery- I'm guessing the incision (if anterior) is still off to one side, so keeping an ice pack on it must be a chore

i’m in the USA so at home we have a physical therapist come to the house for a couple weeks for therapy and then we have to go outpatient therapy for a month three times a week. It’s a process, but I did ice quite a bit. I bought the gel packs the large gel packs on Amazon kept them in the freezer so when one got warm, I grabbed another one they lay flat so consider that they can wrap around your hip. my hip scar is in the front tiny probably 3 inches long.
I’m having my other hip replaced this coming April which actually I hardly even walk because it hurts so bad. I should’ve gotten it four years ago, but I was a caretaker for my mom and then a caretaker for my dog so I had to postpone it for the love of them. But I’m ready now.

 

[IndigoKnee]

I had a TKR two years ago and certainly my leg did not work 'just fine' immediately after surgery as you suggest.

what was different about it?
I gather you need to move more slowly (this makes me nervous as the bathroom is as far away from my bedroom as is possible in my small place- imagining not making it there on time! eep)

I mean, there are a lot of videos of pts just one to 3 days after TKR showing them standing and walking with NO support (some of them) and some with just a cane- and they are not younger pts
If you check who is making these videos they are almost always done by a surgical practice... and the pt is always asked how they feel. it gives the illusion that TKR is not big deal and you'll be walking just wonderfully right away
which is probably not true..........
and they don't mention the nerve blocks you may have been given that wear off in a couple of days
or other meds that you may be on.

I was spending 5-10 minutes on my feet a few days after surgery, walking round every hour

what it easier to walk or to stand still?
I want to be able to stand at the sink and the stove to make simple things like steamed veggies and to wash up a few dishes.

I did go and lay on (not in) my bed and elevated my leg using a stack of pillows.

how many times did you need to elevate and ice? I've gotten the impression from friends that they had an ice machine on all day long! and that they spent almost all their time with the leg elevated if they were not sitting to eat or use the bathroom or doing their little walks

ah, I never lay "in" my bed, not even to sleep. I sleep on top of a bedspread and if I feel like it, toss a throw blanket over me. Have always needed to have my feet uncovered and hate getting tangled up in bed clothes etc

still having a hard time picturing what those first few days and weeks will be like but I guess time will tell :P

You said that you know at least 50 people who have had this surgery so maybe they can give you more details of 'what was different' as everyone will have different answers to that question. For me I was in a lot of pain both while walking and standing and because I could not bend the knee much due to swelling sitting at the table to eat was uncomfortable. Everything took a lot longer, even getting ready for bed was exhausting. I was icing and elevating the leg several times a day between doing exercises and walking round the house or outside. I had to take codeine several times a day and that made me feel nauseous and dizzy. But as I said everyone is different and I expect some of the 50 people that you know will have a different experience to me of those first couple of weeks. I hope the surgery goes well for you with a swift recovery.

 

[Layla]

@meecies,
To address the quote of my words that you highlighted, "balance" means not overdoing either one.
Too much lying down can cause stiffness and too much sitting or standing can cause swelling or pain. Listening to your body and following your surgeons advice is key. Keep in mind that each recovery is unique. While the BoneSmart philosophy successfully works for many, there will be exceptions. Between the recommendations found here, your surgeon's recovery protocol and any physical therapy you may engage in, the key is to find what works best for you.
Happy Saturday!

 

[meecies]

I expect some of the 50 people that you know will have a different experience to me of those first couple of weeks.

Sorry to hear it was so rough for you. I hope that things have improved a lot since then!
Oh those 50ppl: most of them don't want to talk about it, they don't want me to talk about it, they just think it's something you should do if your doctor says you should, don't ask questions, do what the doctor says and you'll be good. Some of them still limp, several of them are still in pain, but all of them drive so it doesn't matter to them that they still can't walk much, because they never walked much before-didn't want to and still don't. I don't drive, so not only do I walk a lot, I used to enjoy it a lot.

 

[meecies]

Why bother? Seriously...

 

[Layla]

when I wake up knowing I am one day closer to "D" day, my heart pounds and all the scary thoughts rush in and I wonder how the hell I can get thru this without having a heart attack

This is easier said than done, but how about reframing what's quoted above and try viewing the surgery as you are one day closer to begin the healing that will take away the pain, improve your range of motion and mobility and allow you to resume some activity that's likely impossible at this point.

so for now, every morning I tell myself that something will likely come up, I won't pass the pre op assessment, etc and so every morning I have mentally cancelled everything

This will mean living with the pain and any limitations you have. Joints often worsen over time, sometimes quickly. You don't want more joint damage or weakening muscles which can make recovery more challenging. This way of thinking, basically looking for an escape clause, has you living in limbo which can increase the stress and fuel the dread of surgery even more. Continue preparing mentally as well as physically for surgery once you're cleared with a focus on less pain, easier movement and a better life. You can do this, meecies!

 

[meecies]

 

[Layla]

Good Morning meecies,
I am not sure how to read the emoji you left above. I understand you're feeling a lot of anxiety right now about this pre-surgery process and also have concerns something might stop it from happening. That's understandable...this is a big step.

My goal in reframing was to try to help you focus on the benefits ahead, but I can see you're not feeling that way right now. As moderators we try to keep discussions supportive and sometimes that means offering suggestions to reframe challenges...trying to help someone to look at the situation from a different viewpoint. We try to focus on solutions in our responses so the forum remains a helpful space for "all" reading here.

The majority of challenges here are common ones we've seen shared on BoneSmart over and over through the years. The advice and suggestions we offer are often based on ideas and solutions that have helped members in the past, with the understanding these suggestions won't be the answer for everyone. We hope all responses are respectful and clear since BoneSmart is a public space where we all learn from another.

May your Sunday be a peaceful one.
@meecies

 

[meecies]

Just back from the surgeon, he will not do the surgery, he said it is unlikely to fix my ankle-even though 2 yrs ago he told me "surgery is the only cure" and their podiatrist told me the only thing to fix my foot and ankle was having my R knee done. He will not do it, he said it is only done to alleviate pain-not to correct deformities that affect other joints, he does not anticipate a good outcome.

 

[meecies]

Radiology report, both knees

Osseous structures: No acute fracture or dislocation seen. Bone
mineralization is preserved. No aggressive osseous abnormality
identified. Small fabella is noted on the right.

Joint spaces: Severe bilateral tricompartmental changes, right more
than left. Chondrocalcinosis is also noted. Small right joint
effusion.

 

[meecies]

 

[Jamie]

Can you get an opinion from other surgeons?

 

[meecies]

Can you get an opinion from other surgeons?

I've seen ortho surgeons in every single practice that takes my insurance.

up until today, this guy has been telling me "the only cure is surgery"!!!!

I confronted him about that, I told him I remember his exact words... then he back pedaled a little bit but claimed that he changed his mind because "I wasn't in pain at that time" That is also untrue- I went to him because (** see below)I was in pain EVERYWHERE including my knees and he gave me an Rx for celebrex 200 TWICE a day. I still have the bottle with the date and dose!

so something happened to change his mind.
was it because he found out that I was prepared to have surgery last Aug with a different dr and backed out? I don't know

the one I just saw today is one of the best in the area, and I think he's the only one who Is subspecialty-trained in adult joint reconstructive surgery.

From his bio: He trained at the Massachusetts General Hospital. He specializes in all knee and hip replacements. He graduated from Tufts University School of Medicine and completed his residency training in the Boston University Department of Orthopaedics at Boston Medical Center. He has expertise in the field of joint replacement, including computer navigation, patient-specific implants of the hip and knee, and treating patients with severe post-traumatic and congenital deformities.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

he told me point blank that he is not confident that he can make any difference for my ankle/foot on the side with the valgus knee.
he said it's a major surgery with considerable risks and pain and a long recovery etc and he could end up giving me a leg that is potentially worse off than it is now !!!!!!!

I told him I was well aware of all the risks and that I was willing to take those risks because for years- and from MULTIPLE orthopedic drs and podiatrists and foot doctors- I have been TOLD repeatedly that the ONLY thing that would fix my ankle and foot pain was getting THAT knee replaced

and NOW he claims there's no way to know if it will be any better after surgery.

Do I want to go thru with it if even the best dr in the area doesn't think it will make any positive difference? of course not

seriously my brain has exploded multiple times since leaving his office

why have they been lying to me all this time?
is there some other reason (perhaps connected to how difficult it is to bill medicaid?) that they are not telling me?


in any case, if THIS guy doesn't think he can get a good outcome, I have no reason to think anyone else could.

The one I almost had do it last year wrote at the end of his notes something about not promising any particular outcome, so apparently he was willing to put me thru all of this without any reasonable expectation of being better off...

which blows my mind even more!!



so who is telling me the truth and how on earth do I know who to trust?

he said they ONLY do knee surgery to alleviate pain in the knee. that's it

that's funny (not funny haha but funny sarcastically) because when I was in agony from this knee and was walking with a cane, I was refused the surgery. Never given a reason. Xrays showed significant OA back then but not the very obvious end stage that I have now

It was likely because I was 50lbs overwt. But he never said that. OR it may be because then, as now, I have medicaid



but to lie to me year after year after year and lead me to believe that there was some hope for a semi normal life, that's criminal


that is so wrong on so many levels.

I finally get up the courage to go thru with this.....
I can't even put into words what I am feeling right now

devastated.

I had all my ducks lining up... sold some stuff to have $ to pay ppl to help me and had a couple of possible helpers.

had a detailed list of food to make ahead and all that, was re arranging my apt to have paths to accommodate a walker etc etc

I don't know
it is what it is

I see a spine dr tomorrow, this knee doc claims all my balance issues must be from my spinal stenosis

I saw the spine dr less 2 mos ago and he said my balance issues were all from the LLD and my knee and the way I have to walk

I just get passed from one dr to another dr and nothing ever gets fixed


~~~~~~~~~
** in case any one is wondering, the all over pain that I had 2 years ago is from my metabolic bone disease that I did not know at that time was getting worse

~~~~~~~~~~~~~~
edited multiple times because I'm so upset I can't even see straight
I've been agonizing over this decision for years now!!!

 

[Jamie]

I’ve never heard of a surgeon refusing to do knee replacement surgery for a patient who is bone on bone unless it was because of a high BMI (higher risk for infection). You say you are overweight….what is your BMI?

Hopefully your spine doctor will be a little more helpful in explaining his proposed treatment and it will be something you can consider.

 

[Jamie]

Did he actually flat out refuse to do the surgery or did he just warn you that the knee replacement may not fix your problems and tell you to make the decision for surgery or not? That’s not clear in your post.

 

[meecies]

. You say you are overweight….what is your BMI?

I am NOT overweight now, I am normal weight
BMI was 22 and is now 24 so not even overwt yet but if I keep stress eating, I could get there.
I was overweight prior to 2016 but I lost approx 50lbs

 

[Jamie]

Okay….that’s good. Your BMI level should not have been a problem then.

 

[Layla]

Yes, I'm curious also, meecies...did he flat out refuse the surgery? Because there really is no guarantee for a perfect outcome for any surgery.
@meecies

 

[meecies]

Did he actually flat out refuse to do the surgery or did he just warn you that the knee replacement may not fix your problems and tell you to make the decision for surgery or not? That’s not clear in your post.

He said I am not a surgical candidate, that he can't in good conscience do the surgery when the risk of me having a poor outcome is so high-greater than 50%. He said he was just being upfront with me that I could end up worse off and that it was a lot to go thru to not have a good outcome. He said and I quote "we ONLY do surgery for pain relief, no other reason". He listed all the common complications like blood clots and infections etc. When I said I was well aware of the risks and that I had found a chart that showed that the highest percentage of those things happening was like 3% risk, but he went back to the you're going to be worse off, do you want that?

It was clear from the minute he walked into the room that he had no intention of taking me on as a surgical patient- what I didn't know is that this was decided weeks before my visit after I called about the hip issue (more about that below) At one point he pulled out a copy of a list I had given him many years ago, of medications that I am either allergic to or had an adverse reaction to, and said that there should be no more than 5 things on that list, and "studies show" that patients with a long list of medication issues have a much poorer outcome
Really? What studies? He mentioned blood clots and infections again. I am well aware of these risks and also well aware that those issues are rare with careful planning. I am not for any reason at higher risk of infection. I am actually unusually healthy for my age. I take no prescription medications. I have no chronic illnesses.

I suppose he noticed that some of those meds are typically prescribed for people with mental health issues and that would be the likely real reason for refusing-oh no, she's a loony, gonna be nuthin but trouble. Whatever.
Which still makes no sense because he's been hounding me for years to agree to the surgery
You tell me what has changed?

He did not mention the metabolic bone disease as a possible reason for a failed procedure which is ludicrous because that is the only thing I've got going on that should have been mentioned... and he wasn't concerned about that. I have a great deal of bone turnover, my ALP is still high and my urine calcium is not down to normal yet but close...People with active hyperparathyroidism of any kind are at greater risk for implant loosening, but the one true reason for waiting or saying no, he brushed that off as not an issue. You tell me what that means!

There was a note in the chart between him and the nurse after I called to tell them about the pelvic xray that said I had severe joint narrowing in the hip (I don't, the actual hip extra shows the 2 bone spurs I was aware of and moderate joint space narrowing) The nurse told me that they do the most painful joint first
and I laughed and said, that's going to be tough then, because the most painful thing is my foot and ankle
my knees do not hurt, my hip is uncomfortable from time to time and it catching like it did, that was scary, but otherwise I've never felt the need to take any OTC pain meds for it nor the knees on rare occasions when I've done a lot of walking I might have some swelling in the R knee and I might take a Celebrex-but mainly due to the pain in my R foot and ankle, not the knee.

so anyway the nurse asked him in this exchange if he wanted to order a hip xray and he said yes
but he added "since there's no pain, no surgery. PT only"

so I'm being jerked around- for what possible reason?

 

[meecies]

es, I'm curious also, meecies...did he flat out refuse the surgery? Because there really is no guarantee for a perfect outcome for any surgery.

Yes he did. I wasn't asking for a perfect surgery, in fact I'm probably one of the very few patients who is acutely aware of how difficult this surgery is and how unpredictable it is, but to be told that you've got a greater than 50-50 chance of being the same or worse? I'm questioning the accuracy of what he's saying. I don't know what is true any more, but he has destroyed my faith in any doctor. This was the guy who said he would make my valgus knee'd leg shorter when I told him I was concerned about the surgery making it longer (which is what typically happens) because I have a fragile hyper mobile SI joint, but he wanted me to do the surgery so much on that visit that he was willing to tell me that he'd shorten my longer leg.

Then another surgeon said we don't do that, because that would make your ligaments loose and lead to instability and possible implant loosening. He was wiling to do the surgery, but made it clear that he had no idea what the outcome would be, but led me to believe it would more than likely be an improvement, otherwise he wouldn't do it, but that's at the practice that was so fed up with me coming in and asking for PT or shots, that one of the doctors yelled at me-saying we are surgeons, if you're not going to have surgery stop wasting our time!
(that was a spine surgeon) I told him that my PCP sent me because they wouldn't treat an ortho issue again and again and again I get passed from one doctor to another so far PT is the only thing that has actually helped me any but now my insurance is denying me that! I am so in a difficult position.