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

[meecies]

Can't sleep, going back over what he said.
He said "so you can't walk- maybe you take up swimming or biking instead." Yeh, sure, I can swim to the grocery store. Ride a bike? Is he nuts? Has he ever been on a bike? My right foot is turned out and will not stay on the pedal, my right knee is bent so far to the left that it hits the handlebars. In order to use the stationary bike, I have to manually pull my right knee over to keep it from striking the machine and even that doesn't work any more.

 

[EalingGran]

I do sympathise as someone who has spinal stenosis, significant hip arthritis and had one very twisted valgus leg from lateral arthritis. Like you I had surprisingly little pain in my knee but I had significant sciatica and hip pain. My surgeon says lateral arthritis with valgus deformity can be relatively pain-free until very late.
I was lucky in that my surgeon was able to straighten my leg with my PKR and that made a lot of difference to my other joint issues.
Surgeons can get very focused on one joint and also reluctant to operate if they feel there may be a poor outcome for a variety of reasons. Surgery in the valgus leg can be particularly challenging. I am still amazed that my surgeon managed to correct a 20 degree deformity with a PKR.
I hope the spine surgeon can offer more help. It might also be worth asking him whether he thinks knee surgery would help your overall problems.

 

[IndigoKnee]

I don't need any kind of supportive wrap and do not use canes or sticks, walk upstairs without using a handrail, no problems at all and can walk 2 miles in about 45 mins.
My knee sometimes swells a little if I'm walking for a couple of hours but not so much you can see it, so I ice it and its back to being fine pretty quickly,

My knowledge of US medical insurance is very limited but I wonder if you said the above to the surgeon and therefore because you are saying that you can walk well without pain to the knee and that is the joint that the surgery is for maybe it doesn’t tick the boxes for the insurance & that is why the surgeon has refused?

 

[meecies]

therefore because you are saying that you can walk well without pain to the knee and that is the joint that the surgery is for maybe it doesn’t tick the boxes for the insurance & that is why the surgeon has refused?

no he admitted that by xray evidence alone, I "technically easily qualify" for knee surgery.
It was approved last year but for various reasons I cancelled. different surgeon, different practice.

the truth is I have no pain in the knees
I don't know why- I certainly used to.
but it's great except that it seems to make me something of a freak in the TKR circles.


I do have pain in my R foot and ankle if I walk more than a couple of miles in any one day.
Since I don't drive, that's a lot less walking than I need to do to get around, so my life is very limited lonely depressing and i'm becoming a miserable bitter old woman. don;t even recognize myself any more

not having the surgery- it doesn't matter.
it really doesn't

there are far worse things in life.

just read thru the thread of the fella who spent the last 5 yrs in almost constant pain, with surgery after surgery after surgery and infection, only to have his leg amputated above the knee

I'll take my foot pain over that any day.

 

[meecies]

Surgery in the valgus leg can be particularly challenging. I am still amazed that my surgeon managed to correct a 20 degree deformity with a PKR.

that is amazing
how were you able to get that? not that it matters now but initially I had OA in only one compartment but was told I was too old (?) for a TKR and that it would eventually need to be a TKR
I don't know the degree of my deformity, no one has told me. no one has measured it.
I forget, did you have the valgus knee from childhood?

Surgeons can get very focused on one joint and also reluctant to operate if they feel there may be a poor outcome for a variety of reasons.

I understand that but he did a total 180- going from telling me that "surgery was the only cure" to - nope, not gonna do it.
I mean he probably did me a favor, as I look into the long list of problems that he mentioned, so it doesn't matter now.

I hope the spine surgeon can offer more help. It might also be worth asking him whether he thinks knee surgery would help your overall problems.

saw him today, he was totally focused on the xrays (which he showed me in detail) and on finding out what the problem might be
He won't have a diagnosis til the MRI is done but I do have cervical spinal issues. He can't say for sure (yet) if they have anything to do with my balance and proprioception problems


I have horrible pain in my upper shoulders, neck and upper back and sometimes head. It isn't as often as before and I can't relate it to anything that I've done or am doing- these um, attacks? episodes? of pain come on randomly and intensely.
As much as I complain about all sorts of other things, I have just accepted this pain from the C spine and it never crossed my mind that it might need to be investigated further.

I never mentioned it to the knee dr beyond saying that I was in PT for my shoulders...

just gotta wait a few weeks to get the MRI approved
I hope it's something that can be fixed.

 

[EalingGran]

don't know the degree of my deformity, no one has told me. no one has measured it.

Although you need a geniometer or X rays to do it precisely- it's relatively easy to do it yourself visually. Just stand with your knees touching and see how far apart the inner part of your ankles ( medial malleoli) are. Maybe try to get a friend to take a picture.
I was always knock kneed as a child. Probably about 10 degrees. I remember going for weekly physiotherapy and having to pick up marbles with my toes or trying to walk on the outer edge of my feet.
It was only as the lateral compartment collapsed that I got dramatically more valgus on that side. I remember being in a shop with a mirror in the lift and being shocked by how deformed I looked.
I hope the cervical spine issues can be resolved for you.

 

[meecies]

Although you need a geniometer or X rays to do it precisely- it's relatively easy to do it yourself visually.

I actually bought one of those but am unsure if I'm using it correctly. I come up with something slightly greater than 10 degrees but less than 15 (my vision is poor so I think I'll ask my PT next time I see him to do it for me)
I've seen photos of knees with the degree of valgus you had and wow, it does look quite bad! it is amazing that they were able to fix that so successfully for you!

my xrays show that I have OA in all 3 compartments now -so too late for a partial - I wish I could have had one in the past....
but as far as I know, the reason my knee went is due to a improperly/poorly healed spiral fracture of the tibia/fibula.


now I'm wondering-
that issue with my tibia is NOT going to be fixed with a TKR- so they must know that the implant will also be 'off kilter' and wear down on one side as well.....
why wouldn't it??

so that means the surgeon is correct- my risk for complications is quite high.
I should wait til the situation is unbearable before I do anything as drastic as surgery.

I hope the cervical spine issues can be resolved for you.

thank you, me too!

it's not fun being all wobbly and clumsy and falling over a lot
Makes going out in our harsh New England winters with all the ice, very scary

 

[meecies]

does any one know where you would go to get gait training?

the place I go to for PT has no knowledge or experience with it

it's a last ditch effort to try to find a way to walk without falling over so much

 

[Jamie]

You get gait training from a physical therapist trained in that therapy. If your current PT clinic doesn’t have anyone with that expertise, you’ll need to call around to other therapy clinics. You might try one connected with a hospital. You can also ask your GP or surgeon’s office for a recommendation.

 

[meecies]

thanks Jamie
I did call around and so far, none of the places that take my insurance have even heard of it

I saw my usual PT and was hit with a new $30 co pay that I'm pretty sure is against the rules of them agreeing to take my insurance... the practice was bought out by another company.
Obviously I can't afford that so now I have to see what to do about the PT order, can it be transferred to somewhere else or will I need to go thru the prior auth all over again or what.

PT believes that the main cause of my C spine pain is in fact from the way I have to walk.
I was trying to connect it to something that I might have done to set it off but it comes on seemingly randomly- when I am walking. Usually I can walk about a mile before it starts but after that, it keeps getting worse and worse.
Most of the places I need to go (where there are no buses) are over a mile away, mostly in the 2-3 mile range

MRI of C spine is scheduled for Monday-

~~~~~~~~~~~~~~~~~~~

I am having a very hard time finding any credible reliable non biased information about the claims the knee surgeon made about why my surgery would not be successful

He said that because I have more than 5 medications that I have had adverse reactions to, my chances of having a post op infection in the implant was 50% higher
(higher than what, he didn't say but one can guess he means the average or normal infection rate)

he said that he is unlikely to alleviate the pain in my foot and elsewhere due to the altered biomechanics of my body from the knee deformities- and that it was likely? or possible? that I would end up worse off

It was hard to absorb and digest all that he said because he was standing over me, pacing back and forth and rather angrily spitting out all these reasons why surgery was a bad idea


he held up the list of medications that I've had serious problems with, that I'd given him about 4 yrs ago- and which he literally rolled his eyes at, when I did so at that time- saying "we have LOTs of options for pain meds" because some of the drugs include those that are most commonly used for major surgery .

now he holds that list up and is trying to tell me it's all my fault that this won't work out - for drug reactions I have ZERO control over???


I did notice that he had lost some weight; I had been concerned about his appearance in the past, he was not just overweight but appeared bloated. his overall appearance was unkept, uncombed messy hair, unshaven and frankly looked like he needed a shower.
This time he was considerably thinner and cleaner but his mood was aggressive and angry.

in the past he was "oh this surgery is a piece of cake"
he was the dr who said that he could make my right leg shorter

I asked a different surgeon about this and he said that would be very unwise, as it would leave me with loose ligaments making the knee very unstable

I don't know how many surgeons you have to go to or how you are supposed to evaluate what they are telling you-
esp when the same one does a total 180 on what he says

The last surgeon wouldn't discuss my drug allergies and adverse reactions and I never thought to ask if the surgery could leave me worse off-
which is what I've now been told

I don't have reliable transportation- I tried using the medical transportation for a PCP appt that my insurance insisted on- and they left me stranded over 7 miles from home

I had a potential job to raise the $ needed for the help that I'd have to hire and I just lost that, so if I'd gotten a date for surgery this Oct as I'd hoped, I would have had to cancel it anyway

the hurdles are all too high, the real risks seem impossible to determine
but for sure I am not eager to end up worse off
and there is very little going in my favor for a good outcome

 

[meecies]

Although you need a geniometer or X rays to do it precisely- it's relatively easy to do it yourself visually. Just stand with your knees touching and see how far apart the inner part of your ankles ( medial malleoli) are.

so I asked my PT to do it and he said he wasn't comfortable with it that-that I should ask a surgeon

but in his opinion I have more valgus then what I came up with

it's very frustrating that every where I go and everyone I see, tells me to ask someone ELSE for the answer to important questions

no one is willing to answer them, they just say ask someone else who is more qualified

if the surgeon isn't qualified, I don't know who is but so far it's been harder to even get an educated guess out of a surgeon

for the most part, questions about outcome have all been pretty vague such as "we don't know- we can't predict"

well, good lord, you're going to do extensive painful surgery with a very long recovery time, and you don't know......? you can't predict........?



I need to find someone to go with me that knows how to get answers. this is ridiculous.

 

[meecies]

I hope the spine surgeon can offer more help. It might also be worth asking him whether he thinks knee surgery would help your overall problems.

hi, saw the spine surgeon, he did a c spine MRI and that shows pretty bad radiculopathy but no central canal involvement.
I continued with PT but have had some set backs and things continue to deteriorate.

I still have almost no pain in the R valgus knee but very significant pain above and below- sometimes the entire tibia and fibula hurt at night as if that bone was hammered and broken along the full length of it

It concerns me that it is the FULL length of that bone and that the pain is the same as what I had back in March - when I discovered that my Vit D level had dipped and my PTH was high and that my calcium might be low (?) that isn't clear to me, but the endo did recommend taking a rather high dose of calcium - which led to me having so much calcium it was being excreted in my urine - so she backed off that and it started to go down. PTH was still too high but then SHE left for maternity leave and won't be back til Jan.
so I have no idea if my PTH is high again- if it is, it may be due to primary PTH instead of secondary, as the endo thought it was quite possible that I was progressing to primary disease. That could require surgery on the parathyroid but I won't even be able to get tested til she's back

I met my new PCP and then she went out on maternity leave. She treated me as if all of my concerns were just aging and that I should just accept them as normal for an older person (I'm not even 70 yet!) so I will be looking for someone else who doesn't treat older pts as totally unimportant as if we've already got one foot in the grave, so why bother.


I see my neurologist in Dec- she's been great but is limited by my insurance which keeps denying the tests she wants done to determine what is wrong and what to do. It is unclear which of my issues are from brain or spine related causes, which might be some early cognitive decline or even some type of seizure disorder or dementia, it's also unclear how my retinal issues (which can not be corrected) may be affecting my balance and the feeling that I don't know where I am in space- which is much worse when I am wearing shoes. But this come and goes, some times I have incredibly GOOD balance so that's why she's thinking maybe some sort of seizures

I need to do an ambulatory EEG to find out.


I have had an increase in all over pain- they are random and hard to connect to any activity but walking def makes things worse. My PT said that constantly having to try to adjust to the leg length difference, the deformities in both my knees and my ankle and the scoliosis in my spine and the spinal stenosis- all of this is likely causing these random pains

and leading to me being EXHAUSTED - If i walk to the grocery store and back, I need to take a nap a couple of hours later
If I say, clean the apt- just 2 rooms!- I need to take a nap or just sit and rest for much longer than I would like to be sitting

my plan now is to see the spine surgeon to get the lumbar spine MRI and see if there's anything that can be done for that

then to see a new knee surgeon and find out what the best plan of action is to preserve as much function as I can and minimize the risk of falls or more damage to my knees or left hip and right ankle etc
because the spine dr took a look at all of the things that are going on - possible neurological issues, the spine issues, the fragile SI joint, the LLD, the windswept knees (he was the very first dr to confirm that that is what I have, all the other drs brushed that idea aside as being absurd) and all things considered, he said any surgery at all will be very complicated (and this is with him NOT knowing that I have some serious issues with a lot of the meds used for surgery!! so he doesn't even know that there are more complications that the knee OS was worried about and gave as reasons not to do the surgery!)

so anyway overall he said getting knee surgery should be an absolute LAST resort


I'm having a terrible time with accepting this
and with the grief of knowing that this may be the "best" that I ever am for the rest of my life, that there will be no relief coming and that instead, things are more than likely going to get worse

I continue to do what I can to have some sort of decent life but it becomes more limited all the time

I am hoping that somewhere along the line someone will be able to give me enough relief so that I don't need to spend as much time resting and trying to recover from just doing normal daily things.

another very hard thing is that my friends are not at all empathetic and have been brainwashed to belief that drs can fix anything and everything and that I must not want to get better, which is so freaking absurd it makes me want to smack them.
I know they are probably only saying this because they don't like to see my suffer this way but also because it scares them that something similar could happen to them....

people these days do not seem to know how to be supportive.

but I just try to cheer myself up with little things, like I am trying to grow wild petunias indoors under lights

the seeds germinated today! I was so happy to see them

I have some green bean plants growing under lights and next week I will start some bush beans- cranberry beans that you can eat fresh or can dry for longer storage.
Grew some in my community garden and they were SOOOO good! creamy with a rich broth!!

yum!

I lost almost 5 lbs but now that the weather is getting cooler, I get chilled quickly so if I put a bit back over the winter I won't be too upset

it has not made any difference that I can see in my knees at all, being 5lbs lighter. Or maybe it has a little because I'm more likely to try to walk further than I used to or walk more often and that may be increasing my pain

I do a lot of in home PT but am just chasing pains from one spot to the next LOL
it's my neck, my shoulders, my SI joint, my lower back and my legs and ankles and feet

yeh aging is not a disease, and someone without these deformities could expect to live a relatively pain free life

but I guess that's not going to happen for me

I hope all you guys are doing well and enjoying whatever freedom you get from your new joints

take good care of them!
I recently learned that the risk of infection NEVER goes away, and in fact increases the older you get, so that seems to support the idea that you wait as long as you can before you have any elective joint replacement

 

[EalingGran]

anyway overall he said getting knee surgery should be an absolute LAST resort

Sorry that there don't seem to be any obvious fixes. I think windswept knees are very complex to correct.
Have you tried looking at my pilates teacher's free videos on YouTube ( Google Katja pilates)? I have multiple joint issues including spinal stenosis/ scoliosis and lumbar arthritis. Her lower back video is very gentle but good for strengthening the back. Her core videos are great as well for strengthening the core muscles which protect the back.
Unfortunately as we get older it seems necessary to spend almost as much time as we did working on body maintenance.
Good luck.

 

[meecies]

Have you tried looking at my pilates teacher's free videos on YouTube

yes I've investigated different yoga and exercise routines and taken some classes. Katja pilates doesn't appear to have any videos with instructions for those with physical limitations and how to safely use props like yoga blocks etc to adapt the exercises to the realities of a deformed/deteriorating body...? don't have time to watch them all right now but it's not looking like there is any focus on adaptive stuff


There is no way to stop the collapse of my knees nor the progression of the arthritis in my left hip.
There's a lot that is simply impossible for me to do any more and I lose more mobility all the time. 6 yrs ago I could do a modified child's pose, by extending my right leg out to the side, that can NOT be done any more and child's pose is actually contraindicated for me. As are almost all single leg exercises.

I have to run every thing past my PT to see if there are ways to adapt to my limitations.
He's run into a road block with my SI joint as it is so fragile, it severely limits most single leg exercises esp weight bearing ones. I might contemplate having it fused- we discussed it in the past but the idea was discarded because there are other joints that will continue to deteriorate so it might cause bigger problems down the road.

I have several hyper mobile joints and for those we have to do isometrics.
and due to an untreated tibial avulsion fracture when I was 16, I have a chronically unstable right ankle and loss of dorsiflexion of the right foot.
I've got body parts that just simply do not and can not move the way they used to.

Balancing it all is difficult even with the guidance of an experienced PT.
but he's doing his best.
I have done some serious damage in the past, trying to go it alone with YT videos or even just classes at the Y because they have no clue what to do for ppl with medical issues. Tore my meniscus trying to ride one of their bikes. partially dislocated my left shoulder... So it's only medically approved stuff for me.

I have multiple joint issues including spinal stenosis/ scoliosis and lumbar arthritis.

You've had knee surgery right? are you dealing still with significant leg length difference and deformities any more?


It's great that you don't have to deal with that knee any more and you were obviously not as severely affected as I am or you would never have been approved for a partial vs a total knee.

it's a whole different ballgame when you've got other joints that are not working correctly, you know?

I've got to get my neurologist and my spine dr to compare notes. esp regarding balance issues. it's not clear if it's neuro or what right now.

My PT said he thinks I need to have a lumbar MRI as I've got increasing issues with pain, weakness and instability that he thinks is from the spine and not the knee or ankle.
I've had DDD since oh wow, 30 yrs ago now and spondylolisthesis, and radiculopathy in the C spine and L spine off and on for a long time. The facet joints in my neck look they've been smashed. The only thing that looks worse in my non medically trained opinion, of course, is my right knee- that is totally destroyed. It's now severe in all 3 compartments and my IT band is killing me all the time, the top and bottom of my fibula hurt so bad...
sigh

getting older is not fun.


I'm hoping that the spine dr will give me another order for PT- which I may not be able to use til after Jan 1st as there are strict (and if you ask me, stupid!) limits on PT and I think I've used up all my visits for this year without an over ride.

I love the PT I have now but he has never done any warm ups or stretches and that has to be part of my routine, so I am hoping to go to another practice (where I've found good PTs in the past) and see if I can get one who can help me with safe stretches and warm ups.

I *have to* limit high impact exercise like walking, esp since there are very few even places that I can walk. I have bits and pcs of cartilage and bone spurs being chipped off when I land hard after going off a steep curb or climbing stairs or walking on uneven ground. They can get caught like they did this summer (just walking down a slight hill!!) and make it so I can't bend my knee or walk without keeping my leg straight and out at an angle (etc) Boy that scared the heck out of me!
I asked if they could just go in and do a wash out of the knee but they said no

i don't understand why the heck they can't!!

but whatever
it is what it is

I will have to find a way to get around this winter, hoping I can find ppl willing to take me to the store sometimes for groceries

 

[EalingGran]

You've had knee surgery right? are you dealing still with significant leg length difference and deformities any more?

No. My legs are now equal in length. My surgeon said that the previous leg length disparity was apparent ( due to the 20 degree valgus leg) rather than real.
He massively straightened my right leg.
He said he could have totally straightened with a TKR but could only restore my natural alignment with a PKR. I am now about 5 degrees valgus on both sides.
I was amazed at how much he was able to straighten my leg through a 4 inch incision.
This realignment completely took away my hip pain on the operated side and largely cured my sciatica. I still have lower back pain and mild sciatica after long car journeys but it is a massive improvement.
I have significant hip arthritis and he thinks I will need a THR at some point but I am reluctant to consider this when I am pain free.

 

[meecies]

oh finally some good news! my local grocery store will be accepting EBT (food stamps) for their delivery service starting Oct 28th!!!!!!!!!

oh thank god, the idea of trying to walk down there in the ice and snow this winter was really depressing me

got this in an email today
"Better Payment Options. We're happy to offer more Hannaford To Go online payment options including EBT and Apple Pay. Curbside payment and coupons will no longer be accepted."

in other news, the night before last I was woken up by horrible twisting pain in my LEFT leg (my right one is the one that's caused most of the issues so far)

It was like nothing I've ever experienced before

called ortho and asked them- who do I see for this???
the last dr I saw was the spine dr (but he also saw me once for an urgent issue with the R leg over the summer)
so they got me an appt today with the spine dr


then I called the company I have my PCP and endo and neurologist with, a bit medical group, and asked them who should I see to address whole body ortho issues and they suggested the pain and spine center so I'll call them today

I'm exhausted and almost always in pain somewhere in my body
afraid to do something that will make it worse
but afraid too of not moving enough and getting too weak

 

[meecies]

being sent to Pain and Spine Center and to Bone Health too- since my endo and PCP are both on maternity leave, the Bone Health clinic will be able to do blood work to check on my HPT and alk p and other bone related labs

the pressure on the nerves in my back IS what is causing my loss of balance

I'm strong enough so that I can balance on one foot easily - until/unless something gets out of whack and there's pressure on my spine- and then I can sometimes barely walk without falling over

no idea what if anything can be done for that

My IT band is very painful- gonna borrow a rolling pin to see if that might help (PT suggested it)

ran out of PT so now I wait to see if ortho or pain clinic can get an extension