TKR at 81, living alone, and with balance difficulty: a good idea?

I’m curious as to how you had your large fiber neuropathy diagnosed. I’m 77, live alone, and have had fibromyalgia-related excessive fatigue and post-exertion malaise for more than 40 years. My old primary Dr is deceased, so my new one decided (wisely) to order a new neurological workup, as some of my new issues resembled MS. Thankfully, it wasn’t MS, but I was diagnosed with idiopathic peripheral neuropathy. That was four years ago.

I’ve not had a Dr explain why weakness in one leg started 25 years ago, noticeable when climbing steps. Was it the start of neuropathy back then? I don’t know - it was chalked up to moderate degenerative disc disease in my lower back, though I don’t have back pain with it. However, balance issues haven’t improved, I use a cane now. A few years ago, I suddenly sensed I couldnt use an escalator to go downstairs in the mall I (seem to have spatial perception issues now) The initial movement, putting my leg out, holding on, looking down a steep moving staircase, all contribute to the sense of losing my balance and falling. I use the elevator now.

I’m overweight, diagnosed with bone-on-bone OA in one knee 2 years ago. Ortho at first suggested TKR but wanted me to lose 30 lbs and exercise. He gave me a cortisone shot, which greatly helped the pain. Before I saw him, I was swimming to exercise my legs - over did the kicking movement in the water, putting stress on that knee - causing great pain and inability to walk/bear weight.Imaging showed the OA. I can’t take anti-inflammatory meds - I’ve had bleeding issues with aspirin. Tylenol does nothing for me.

After the shot, I started doing slow paced walking in big box stores in my small town - managed 20 minutes, using a grocery cart. Without the cart, I absolutely must have a cane.

I also went to PT, which helped - where they put me on the recumbent stepper made by SciFit. Best thing ever - I could do it for 10 minutes at therapy twice a week (along with their other manual exercises). Before 3 months of therapy ended, I discovered the local YMCA has 3 SciFit recumbent steppers and our Senior Center has two. Check them out on YouTube. It is the first exercise device that I can do 30 minutes daily - depending on one’s pace, it provides moderate to excellent aerobic exercise, moving both arms and legs. No stress on knees! Arm exercising is optional with the machine, one’s legs on the peddles operate it. I do not get the “post exertion malaise”, a flu-like condition associated with the hyper-nervous system response that fibromyalgia causes. This recumbent stepper really exercises thigh muscles! My knees are stronger - though my legs really tire if my total step count is above 7,000 daily.

Finding I can do the recumbent stepper without difficulty has motivated me. I’ve lost 7 lbs. I still tire easily and my balance is not improving. I do standing toe & heel pumps at the kitchen counter, exercising lower leg muscles. I really recommend this stepper machine! Another plus - the seat slides off the rail and a user in a wheelchair can be rolled in place. You might want to give the recumbent stepper a try. Nu-Step makes one, but a wheelchair user isn’t an option on the NuStep. Guessing that’s why the Y and senior center chose the SciFit model. Ask around in the gyms in your area about a recumbent stepper. It counts your steps - I get about 3500 steps in thirty minutes at Level 1 on the SciFit. Again, no stress on knees and strengthens those thigh muscles supporting the knee.

A year later, this past Dec, I had one more cortisone shot. Ortho was surprised I hadn’t come in in a year (didn’t need to) and now says if I get down to 175 lbs (my goal, I’m at 210 now), he doesn’t think I’ll need TKR. I do not have goals of traveling - the fibro-fatigue is too much to handle - so he thinks losing the weight will be sufficient, with a cane for balance, for my mobility needs (allowing me to drive and live independently with little knee discomfort).

I feel like you - a TKR would be nice, but the other issues with neuropathy (which doesn’t give me pain) and fibromyalgia, make me think TKR might be overwhelming and I might end up with a poor outcome.

What do you think I need to ask for if I see another neurologist to help me understand the type of neuropathy I have, whether it’s progressing, and whether it’s the more significant cause of loss of balance (rather than a bum knee, which can stiffen as I walk)? I don’t want to see the neurologist I saw a few years ago - she doesn’t have a good bedside manner. She also prefers MS patients and that’s not me.

Thanks!

Good morning, @jakefix82

First, I must apologize for not replying sooner to your message. My days lately have been busier than usual. I say "busier," but, if I'm to be honest, I should confess that I've lately allowed myself to be drawn aside by various valueless distractions, resulting in little if any time to respond to messages on Connect. I feel bad about that.

I must also apologize for this, my belated reply, needing to be a short one. As it happens, today I've several real-life distractions, the sort I can't ignore. But I do want to at least answer what appears to be your key question: How was my large-fiber neuropathy diagnosed? The answer: It wasn't …

… unless I were to take as a diagnosis (and I have) my neurologist's "Un-huh, probably so" when, toward the end of a clinic visit, I asked the neurologist: "Doesn't it see more likely that what I've got is large-fiber––not small-fiber––neuropathy?" I based my assumption on all of the reading I've done and the many posts I've read on Connect––and chiefly my absence of pain*.

(*I, too, have OA in my left knee, and, as my earlier post reveal, am considering a TKR––which would be my second. My right knee is already a TKR.)

And (darn it!) now I must sign off and get ready for this day's Distraction No. 1. I didn't want another day to slide by, however, without my at least letting you know that I am here and that I have been wanting to respond to your message for an embarrassingly number of days.

My very best wishes,
Ray (@ray666)

My hubby went to inpatient rehab after open heart surgery and total knee replacement...and after a couple other medications problems. I swear by it! You are forced to do PT 2x/day vs 3x/week. We called it "boot camp".

Hi, @loislane1950. I also spent a few weeks in a rehabilitation facility after discharge from the hospital where I'd been treated for a sepsis infection. And you're right: PT 2x/day! At first I thought, Whoa! 2x/day is waaaaay too much! But today I'm grateful for my "boot camp" experience. I remember how twice each day "Bob," my PT, would appear in my room's doorway, grinning and saying, "Ready? Let's go!" I put his name "Bob" in quotation marks because if ever I entioned to one of the other patients that my PT was "Bob," they wrinkle their brows and say, "Bob? There's no Bob." I'd ask Bob, and he'd assure me his name was Bob. It remained a mystery the entire time I was in the rehabilitation facility. Today I think: Maybe there was no Bob? Maybe Bob was a spirit? Like one of Scrooge's spirits? The Spirit of "Ready? Let's go!" Whoever––or whatever––Bob was, I'll be forever grateful for making me do those 2x/days! 🙂 –Ray (@ray666)

Maybe "Bob" was another person going incognito to avoid retribution for the useful torture sessions? You were fortunate to do 2 sessions per day!

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@mark3248 Sorry you had a bad experience. I had to redo one of my TKRs due to an infection, but even with that unusual complication I would still say my TKRs were well worth doing as they’ve allowed me to stay active and healthy.